However my diary, or at least the blog it gave rise to, has altered my own journey through life significantly. What began as a search for a cure to my own disease has evolved into something of a crusade to help people with Hep C gain access to this new generation of important, life saving drugs that are so expensive that less than 10% of all people infected with Hepatitis C can actually afford to access them. Along the way I have become involved in the shady, multi-billion dollar world of the international pharmaceutical market, a market that generates hundreds of billions of dollars profit each year for a select and powerful group of multinational companies. This story documents that journey and I sincerely hope that you find it helpful.
However to go back to the start I should explain that my decision to travel to India arose because I was disinclined to use the Interferon based treatment that was offered to me by my local hospital, mostly because of the severe side effects, which are much like the effects of chemotherapy. Conversely I could not afford the $90,000 that a treatment of Gilead’s branded Sofosbuvir (Sovaldi) would cost me to buy in Australia.
The original diary is still available completely free on the Internet however, after a lot of emails from people who had read my diary; I decided to add more depth and detail to my story by writing this little book. My web based diary has all the information that you would need if you wanted to follow the steps I went through to get the Sofosbuvir in India so please use that if you need that info. However if you want greater detail about the whole journey then I have spent a lot more time filling in areas that I did not have the time or energy to write about when I was actually in India still carrying the Hep C virus in my bloodstream. As well as being more informative I think you will also find this book somewhat entertaining.
I have priced the book as low as I could on Kindle with the publishing deal that they offer, so I hope the price will not be an issue for you.
I offer both this book and the web based diary in the hope that it will be of some help to anyone who is suffering from Hepatitis C and who cannot access these new anti-viral drugs within their own country. Whilst my journey to India was specifically to buy Sofosbuvir it is reasonable to assume that the same processes that I went through would apply equally to acquiring other generic prescription HCV drugs about to come on the market, such as Harvoni, in India as they become available toward the end of 2015:
In July 2014 my wife and I went for couple of weeks’ holiday in Queensland, having a break from the Tasmanian winter and catching up with friends and family in Queensland and northern New South Wales.
Somewhere along the way to our holiday destination, probably on the flight from Hobart to Brisbane, my wife picked up a very bad dose of the flu and was bedridden for a few days on our arrival at our eldest son’s house. Of course I ended up catching that flu virus too, not as severely as my wife but I was pretty sick for a couple of days. I mention this flu episode now because it was the likely trigger for what was soon to follow.
About mid-August 2014, a couple of weeks after getting home from our holiday, I began to feel strangely fatigued. The fatigue coincided with the colour of my urine becoming noticeably darker and acquiring a rather strong and unpleasant smell. I knew something was not right but did not worry about it too much until I had a day when the fatigue was so overwhelming that I could not raise myself from my bed.
That day I had risen from bed in the morning as usual, had my breakfast and a couple of cups of coffee and then was overcome by a degree of fatigue I had never felt before. That was when I started to become genuinely concerned. The next day I felt a bit better but my urine was still dark and I noticed that after my morning cup of coffee, a double shot long black, the fatigue came back again. I knew something was wrong and I felt, intuitively, that it was probably my liver.
Meanwhile my wife, who had started worrying sooner than me, had Googled my symptoms and insisted that I visit our family doctor, which I eventually did, though I admit it took me a couple of weeks to make the appointment (I believe that is a man thing).
My doctor immediately ordered liver tests and when the results came back they showed liver enzyme levels 20 to 50 times higher than they should have been. Another set of tests showed that I was carrying Hepatitis C. virus antibodies and another set of tests showed that I was carrying live Hepatitis C virus. The enzyme levels and onset of symptoms were indicative of acute Hepatitis (recently contracted) rather than chronic (had it for a long time).
Of course all this produced a mental and an emotional shock, a lot of shock; both for me and for my wife.
The shock of learning I had Hep C was followed by a lot of questions because I knew next to nothing about Hepatitis C. I turned to Doctor Google and asked things like:
How did one catch Hep C?
How did one transmit Hep C?
Could my wife catch Hep C. from me?
Could my children catch Hep C from me?
What were the treatments for Hep C.?
What were the side effects from the treatments?
On and on; there were so many questions. Thank God for good old Google!!!
(I will not list here the answers that Dr. Google gave to all my questions because I am assuming that you have probably read all those answers somewhere else. However I will summarise: Hep C is very difficult to contract except via blood and it is blood to blood. However in the case of blood to blood it is incredibly contagious, only a micro drop of infected blood is required to enter the blood stream of another person to spread the virus. Apart from blood to blood it is very difficult to pass on Hep C. The various bodily fluids (apart from blood) will not do it. Sweat, spit, semen, mucus etc will not pass it on. )
However, even as I was Googling and all that new information was churning around in my head, the biggest question was one that Google could not answer: How did I contract Hep C?
When I got the news that I had Hepatitis C. I was a very fit 60 years old (at the time of writing this I am 61). I had been given a liver function test a few years earlier (2011) as part of a routine health check and all my liver functions showed a very healthy liver with all enzyme levels in the best possible range. No hint at all of any liver problems.
The only recreational drug I have used for many years is alcohol, mostly in the form of red wine and, whilst I did enjoy a regular glass or two, even the occasional glass or three or four at a party, I was not a serious or heavy drinker.
I had been in a happy, monogamous marriage for over 35 years. I was not bisexual and did not engage in any unusual sexual practices that might have involved blood. I had no tattoos or body piercings and had not had a blood transfusion; however I had used intravenous drugs regularly in 1974, mostly heroin. I gave up drug use in late 1974 and was clean for about six months then weakened and had one hit in early 1975. That one injection resulted in a severe overdose and me getting very close to being dead. After that I never injected drugs again.
So I had not used intravenous drugs for 40 years and over that forty years had had a couple of liver function tests that all showed a healthy liver and normal enzyme levels. There was no sign of Hep C, although I don’t think that I was ever specifically tested for Hepatitis C.
My one big health scare in life had been the onset of peripheral neuropathy in 1999. Peripheral neuropathy with when one’s nerve’s start dying from the periphery (the ends). This shows up in the longest nerves first, so in most people the toes start to go numb, then the feet, then the legs and the finger tips and so on up the limbs. In some cases this progresses fairly slowly in other cases quite fast. As the nerves die the muscles associated with those nerves begin to waste away.
So I got numb toes in 1999 and the disease progressed quite fast up my feet and into my lower legs and finger tips.
To cut a long story short I made a number of significant lifestyle changes, including quitting a very stressful job. After those changes the nerve ‘dieback’ slowed and then stopped, even did a little repair work, though they never completely grew back. The big mystery was what had caused the disease? No-one knew; however it had stopped just before I lost the muscles in my lower legs and I was happy with that. My new life style was pleasant and, whilst I was making less money, I was enjoying life a lot more. Although the question always remained: “How did I get peripheral neuropathy?” I put it down to stress.
So in August 2014 , assaulted by the arrival of another mystery disease, I spent many days and nights agonising over how I could have contracted this disease in my recent, clean lived, stress free past. In the mean time my adult children and my wife all had tests to check if they had contracted Hep C and, fortunately, none had.
Doctor Google suggested that the Hep C virus could live in a ‘dormant’ state in a person’s body for up to 20 years however there was little evidence on the internet for it surviving undetected for 40 years.
I tried to think of ways that I might have caught it. I had cut my leg quite badly on a piece of metal a few days before we went on holidays, there was a lot of blood but no-one else was around and I cleaned and dressed the wound myself.
While on holidays I had been walking around on the beaches of Byron Bay barefoot in the evening and perhaps it was possible that I had stepped on a used syringe and not noticed it; although that seemed pretty unlikely. I had gone in for an eye operation in February 2014 but it did not involve any blood, just a bit of cornea grafting. I thought the only likely thing was the stepping on a syringe theory, but it seemed thin.
Whilst I was agonising over how I had contracted Hepatitis C. and spending a lot of time checking out the various websites related to Hep C, I underwent more tests. My doctor was concerned that the high liver enzyme levels might indicate liver cancer or advanced cirrhosis of the liver so he ordered an ultrasound of my liver, which indicated that there was no cirrhosis and no indication of tumours or lesions.
By late October I was able to see the nurse of the Hepatitis Clinic at our local Hospital.
My wife came along to the first appointment with the nurse and we discussed a number of issues, such as how could Hep C be transmitted? Could it be transmitted sexually and how I might have caught it?
The nurse advised us that she had never known a case where Hep C was transmitted between husband and wife or to other family members through normal contact but suggested that, if we were worried about it, we should start using condoms.
She also said that she thought that the most likely explanation for how I had contracted Hep C was through my drug use forty years ago and that she had no problem with the idea that the virus could have lain dormant in my system for that long. She said that there was evidence that sometimes an illness can act as a trigger to bring the virus out of dormancy. When we mentioned the nasty flu we had caught a few weeks before the onset of the hepatitis symptoms she thought that the flu virus may have been the trigger but there was no way of being certain.
It was a relief to have a likely explanation of how I caught the virus.
On my next appointment to the Hepatitis Clinic I saw the doctor, a gastroenterologist. When he saw how high my enzyme levels were he was also concerned about the likelihood of liver cancer and he ordered more blood tests, including for HIV and two other liver scans, a liver flexibility test and a CT scan. The doctor indicated that he was not at all convinced by the ultrasound and, based on the enzyme levels, still suspected that I might have liver cancer.
By coincidence at this point in time a good friend of mine was diagnosed with advanced liver cancer. As my friend came from a medical background we had many irreverent chats about the liver and what a wonderful organ it was. Indeed I have to admit that, prior to learning I had Hep C, I knew almost nothing about this incredibly important organ, I was not even sure exactly where it was. I knew it was somewhere in my torso, that was it. Conversely my friend, Tom, knew heaps about the liver and was happy to share his knowledge.
To boost my knowledge I went back to Google and learned that the liver was a massive organ nestled under my rib cage, snuggled up against my lungs; and it was BIG. Wow… how could I not know about this big organ that detoxified my blood and performed so many other functions? I knew about my lungs and my heart, I knew (roughly) where my kidneys were and where my stomach and intestines were but I had no real idea about my liver.
Anyway I had the liver flexibility test and it showed no problem. Then I went and was slid through the CT scanner and that confirmed what the ultrasound had shown, that there was no cirrhosis and no cancer. That was a relief!
The strange thing was that all this seemed to indicate that I had acute Hepatitis C rather than chronic. That is to say the tests indicated that, because there was no evidence of liver damage, I had contracted the disease recently rather than a long time ago and that made no sense at all.
However there appeared to be no way that I could have contracted Hep C. other than through my intravenous drug use 40 years prior. As I said Googling seemed to indicate that Hepatitis C could remain dormant in a person for about 20 years, however there was not much to suggest it could stay dormant and undetected for 40 years. I was getting confused again. Had I had Hep C for 40 years or not?
Here I have to say that the nurse at the Hepatitis Clinic was again amazingly helpful. The next time I attended the Clinic we discussed the mental turmoil I was going through because all the reading I had done suggested that, whilst Hep C could lay dormant for 20 years, perhaps even 30 years, but there was nothing to suggest a dormancy period of 40 years. The nurse’s response was, again, she had no problem with the idea of the virus lying dormant in my body for that period of time. She explained that the Hep C epidemic was a relatively recent thing with its roots in the explosion of drug use that occurred in the 60’s and 70’s and any understanding of the course that the disease took within the body was still a work in progress. She said that she had personally encountered a significant number of cases like mine with a dormancy period of thirty to forty years and that there was a growing body of evidence to suggest that an infection with another virus, such as a dose of the flu, could trigger, or activate, the dormant Hepatitis C virus, particularly when the carrier was getting on in age, like I was.
Treatment Options for Hepatitis C.
So it seemed I had almost certainly contracted Hep C back in 1974, or from that one last, almost fatal, shot in 1975!
After driving myself nuts trying to figure out how I got it I was kind of relieved to accept that the disease was a consequence of my crazy teenage life that had come back to haunt me. The next line of research, the next big question, was how would I, how could I, get rid of the virus?
Again reading the various resources on Google there was a general consensus that suggested that about 20% of people could kill off the virus with their own immune system, however there were some caveats: the chances of one’s immune system doing the job were much higher if one was:
3. In good general health
So I failed on three of the four and, as you might guess, my immune system did not kill off the virus.
So my other option was a treatment involving the powerful anti viral drug Interferon, used in the treatment of HIV, combined with a cocktail of other drugs, usually including Ribavirin. One injection of Interferon each week for about 9 months and a handful of tablets every day plus a nightmare list of side effects. Add to that about a 60% chance of the treatment being successful.
Even so a 60% chance of a cure was better than none so I researched the Interferon treatment further. I found out that almost half of the people who started the treatment quit before completion because the side effects were so severe. It was sounding less and less appealing to me.
So I looked at natural therapy treatments but found nothing convincing, no-one really even claimed a natural cure (which is unusual, usually someone is claiming to have some new juice or oil to cure everything). The reading I did suggested that natural therapy approaches could help to manage the disease but I could not find any proof (outside the 20% mentioned above) that natural therapies for Hep C would actually get rid of the virus.
So my last treatment option was to try to manage the disease until some better treatment options became available, and there was chatter on the Internet about a new generation of Hep C drugs that might be coming along quite soon.
It was not a difficult choice for me. I have never been too keen on the use of pharmaceuticals for treating illnesses, though they certainly have their place. I guess the terrifying list of side effects from the Interferon based treatment was the decider and the fact that such a high portion of people quit the Interferon treatment before completion of the treatment because the side effects were so bad.
Managing the Hepatitis C virus meant giving my liver the least amount of work to do, that is I was going to take the pressure off my liver. So I gave up all alcohol, cut back on red meat (apparently red meat gives the liver a lot of work), cut my coffee consumption from three or four cups of coffee per day down to less than a half a cup a day and generally tidied up my diet. Plenty of fresh fruit and vegetables.
Here I should add that I do love my morning cup of coffee, it has been part of my breakfast ritual for many years and so I weaned myself gradually as I switched to a roasted dandelion and chicory root infusion to which I added about a quarter of a teaspoon of coffee grounds. I cut down from 3 or 4 cups of coffee per day to just one. Then I started to mix a bit of coffee in the dandelion and chicory infusion until I was down to the equivalent of about one quarter of a cup of coffee per day. About half a teaspoon of coffee grounds spread between two cups of chicory root.
I should also add here that a few people have told me that coffee is actually good for the liver, and that might be true, but my personal experience was that if I had even one full cup of normal strength coffee I went down like with extreme fatigue within about 15 minutes and was totally fatigued for about two hours. It was too obvious to ignore. Occasionally I will have a cup of green tea; however I keep caffeine containing beverages to an absolute minimum. It works for me.
Within a few weeks of making these changes I noticed improvements and after a couple of months follow up tests showed that my liver enzymes levels had dropped back down into ranges that were only four or five times higher than normal. Also the level of fatigue I experienced was reduced, though I still needed a bit of a snooze most days.
In the mean time I had been given a few more blood tests and discovered that I had Hepatitis C genotype 2. This was interesting because it is the rarer type of Hep C in Australia and (apparently) genotype 2 is easier to treat. Like HIV the Hepatitis C virus appears to have had its origins in West Africa, with the origin of genotype 2 being generally agreed to be Ghana. In Australia about 5% of Hep C infections are with genotype 2 whilst about 50% are genotype 1, which is the more difficult one to treat.
The issue of whether or not to tell people I had Hep C was the next thing for me to consider. According to the Hep nurse most people kept their infection secret.
My wife and I discussed it and initially decided that we would tell only immediate family because there was a very small chance that they might have contracted it.
However trying to keep a disease that prohibits the consumption of alcohol a secret was problematic for me simply because I regularly had a glass of wine with friends in various social situations. Therefore I would have to decline the normally much loved wine and that would naturally lead to an enquiry as to why.
Here I could either tell a lie or tell the truth.
I decided it was much simpler just to tell the truth so the next time I was with friends and the bottle of wine came around I explained that I had Hep C and could not drink. Some people knew about Hep C and some did not, so there was a period, for the next couple of weeks, when I did a lot of explaining. In the explanation section I explained that it was almost impossible for me to transmit the virus to anyone in a social situation and I also decided, when the question was asked “How did you get it?” I would simply say that I had used intravenous drugs when I was 19 and 20. Really the truth is the simplest and easiest course to follow.
Once that period of telling and explaining was over I settled down to drinking bottled water and no-one seemed to have decided to ostracize me, my social life went on as usual, although I did get tired of people offering to refill my empty glass of water! And it was also soon noted that I did not need alcohol to make a fool of myself!
The only real change in game play was that I was always the designated driver!
In the mean time one of my sisters contacted me to tell me that a mutual friend, K, had been diagnosed with Hepatitis C a few years back. He had kept it quiet, telling only a few very close friends. My sister told me that he had managed to get onto a trial of a new anti-viral drug that had no side effects and a 98% success rate. He had affected a total cure after a three month treatment. She gave me K’s phone number and I rang him immediately.
K had moved to another city and, whilst we had been close friends for many years, we had not spoken for quite a while so after a bit of friendly banter I said, “So I hear that you had a dose of Hep C.” There was a stunned silence on the other end of the line, then, “How did you know that?”
He thought his infection was a very well kept secret, which I suppose it was. I explained to K that I had recently been diagnosed with Hep C and that my sister had passed on the news of his cure. After the initial shock K loosened up and was very understanding of what I was going through. He ran me through the process of his disease and cure.
The new drug was called Sofosbuvir, a drug manufactured by the USA based pharmaceutical giant named Gilead. Sofosburvir had been approved for use in the USA and not long after his diagnosis K had heard about trials being carried out in Sydney’s Saint Vincent’s Hospital to get the drug listed in Australia. He had managed to get onto the Sofosburvir trial and told me that it involved taking just one tablet each day and that he had experienced no side effects at all.
K explained that the drug was available in the USA but very expensive. A treatment would cost about $90,000 and that, in Australia, it had not been approved by the PBS (Pharmaceutical Benefits Scheme) for a government subsidy that might make it affordable for the average person. So unless you could get on a trial or had a spare $90,000 you could not get the drug.
He suggested that I contact the doctor running the trials, Dr C.
K said he had heard there was another trial coming up specifically for people with Hep C genotype 2. He told me to try to get on that but if I couldn’t get onto that trial then to try my damnedest to get onto any trial that was going. He emphasized that it was hard to get on the trials because there were more than 250,000 Australians with Hep C and they all wanted to get the new drug.
K said I would need to convince the doctors that I was reliable and not going to engage in any behaviour that might re-infect me. He said that because a lot of the people with Hep C were or had been addicts there was the chance they would have a relapse and start injecting again which would screw up the trial results.
The big problem was that I lived in Tasmania and the trials were in Sydney.
So I Googled Hep C Sofosbuvir trials and found that some had been recently conducted in Melbourne. I figured I would have a better chance of getting on the Melbourne trials, being closer to where I lived.
After a bit of Googling I tracked down some places that had run Hep C trials in Melbourne and sent off some emails to their listed contact people. I waited for a week but got no replies so I sent off a few more emails and still got no replies. So I sent off another batch of emails asking (pleading actually) the recipient to please do me the courtesy of a short reply, if only to tell me that they did not want anyone for trials. This got just one response, from a nurse in one of the hospital research centres. She apologised to not getting back to me earlier and sent me a form to fill in and promised she would pass my details on to the head of their Hep C research team.
That seemed promising, even more so when I got an email the next day from Dr A who asked me a whole lot of questions, which I answered and that was followed by some more questions from the good Doc, which I answered, and then a phone call.
I was now getting pretty hopeful. He asked me to scan my test results and send them to him, which I did, really feeling like I was getting somewhere. Then that was the end of communications. despite several emails to him asking what was happening I never heard from him again??? How can people do that?
After the unanswered emails I gave up on trying to get on the Melbourne trials and went back to my mate K, who informed me that the team in Sydney was about ready to start the next trial, specifically for Hep C genotype 2, and that I should apply pronto. He gave me all the contact details and I made an appointment with Doctor C.
Over the telephone Dr C’s secretary explained process.
I would see him as a private patient for a private consultation, after the consultation he would then refer me on to the public section of St Vincent’s Hospital where I might, or might not, get on the trial.
So I booked a flight up to Sydney, fortunately I have family in Sydney so the cost was only for the air fare and the consultation, more than $500 total but worth it if I could get in onto the trials.
My appointment was in the afternoon and I got there early, not having any other thing to do in Sydney. Then the most bizarre thing happened; I was sitting in the waiting room, waiting (as one does), when in walked my sister-in-law and her husband. Now we had actually not got around to telling my wife’s side of the family that I had Hep C, purely because they all lived in Sydney and we did not see them that often. In fact I had not seen my sister-in-law for more than a couple of times in the last few years but there she was.
As it turned out she was having bowel problems and Doctor C was a gastroenterologist she was consulting about an operation she might need. Her appointment was immediately after mine… what weird co-incidence!
Anyway I guessed it was time to tell her and her husband about my infection. They were both familiar with Hep C because her husband is a pastor in a church in Sydney’s Newtown, which has a very high incidence of intravenous drug use.
Anyway the good doctor was running a bit late from at meeting at one of the Universities and he arrived at his rooms in bit of a rush. There was one person to see him before me, and then I went in. His secretary had scanned the report documents I had brought with me, which he skimmed through before asking me a few questions about symptoms and the CT and Ultra sound scans etc. He explained that one of the enzymes which I had at very high levels was a cancer indicator and expressed some surprise that the scans had showed no cirrhosis or tumours.
I could see he was a very sharp, no nonsense dude so we got down to brass tacks, I was there because I wanted to get on the Sofosbuvir trials. Dr C was quite frank, which I appreciated. He said that there were a lot of people who wanted to get on those trials and that it was unlikely that I would be able to get on them because I was not sick enough. He then told me that it was likely that Sofosbuvir would be approved by the government’s Pharmaceutical Benefits Scheme board within a few months and that it was probable that it would become available later in 2015 or early in 2016.
That was the good news. Then for the bad news.
He looked me straight in the eye and told me that it was very unlikely I would be able to get Sofosbuvir even when it became available through the Pharmaceutical Benefits Scheme.
He explained that, because of the high cost of the Sofosburvir to the health system, $90,000 per treatment, the government would not be able to make Sofosbuvir available to everyone with Hep C. At $90,000 per treatment, with more than 250,000 people with Hep C in Australia, that would cost approximately $2,500,000,000 (Two and a half billion dollars) and
(Two and a half billion dollars) and bankrupt the health system.
The doctor told me that the government would only be making the Sofosbuvir available to the sickest of people.
My response was to quote the metric version of the old saying “A gram of prevention is better than a kilo of cure.” And then ask how was that different to someone being diagnosed with cancer then being told they could not get treatment until they were really sick and the cancer reached an advanced stage?
The doctor shrugged and agreed with me but said that it was going to be that way and there was nothing he or I could do about it.That was how the government was going to handle the cost side of things. Incompetent bureaucrats and short sighted politicians!!! Always the quick fix rather than the long term solution.
So I flew back home to Tasmania the next day feeling rather (very) disappointed: I was not going to get into the trial and I was not going to get the Sofosbuvir either. Well I would not get the Sofosbuvir until I was really, really sick… and I did not want to get really, really sick. I liked being healthy.
It was very frustrating.
India to the Rescue (again)
Back at home, a few weeks went by during which time I got over the disappointment and made the decision to focus on disease management until something new came up. Good diet, plenty of fresh air and exercise. Tasmania was a good place for all that. Mister Clean! Mister Natural!
Then one day a mate called me to say that he had some very interesting news. It was hush hush but he had been speaking to a doctor who told him that the Indian government had refused to grant GILEAD a patent for Sofosbuvir and that the Indian pharmaceutical companies were going to manufacture a generic version of Sofosbuvir, which would be for sale in India for around $5 a tablet (not the $1,000 per tablet GILEAD charged), or about $500 for the three month course (It is also worth noting here that the cost of manufacturing Sofosbuvir is less than $1 per tablet).
Suddenly things were looking up.
Off to Google again to find out what was happening.
The Indian government’s patent office had declared that Sofosbuvir did not include enough new or innovative concepts to warrant a patent. They stated that it simply used a different configuration of known anti-virals. Indian pharmaceutical companies could copy Sofosbuvir easily because all the IT was in the patent application and readily available.
(The World Health Organisation estimates that about 12 million people in India have Hepatitis C. Globally there are about 150 million people infected with Hep C. About 350,000 of those will die each year of complications arising from their Hepatitis infection.)
However GILEAD moved quickly in response to India’s refusal to grant the patent and began giving Indian companies non-exclusive licences to manufacture Sofosbuvir. They obviously knew there was little chance of getting the Indian patent and had a Plan B already in place.
This ‘Plan B’ would have appealed to the Indians because it meant that they did not have to figure out any of the manufacturing technology, GILEAD would supply that. And it suited GILEAD because the Indian Pharmas would pay it a royalty on all the Sofosbuvir they sold. It was a lot better to get a dollar or two per tablet than nothing per tablet.
Of course no-one knows how much GILEAD gets from the Indian manufacturers but I guess it would probably be about one or two dollars per tablet. As India has about12 million people with Hep C and if the average treatment used 100 tablets and GILEAD got just $1 for each tablet that would give GILEAD $1,200,000,000 clear profit just from sales in India to add to the US$9 billion in sales they made from Sofosbuvir in the first quarter of 2015.
GILEAD granted that these new Indian manufacturing licences would extend to 91 countries, basically all third world countries, but no first world countries. This meant GILEAD would access a monetary return from about one third of the Earth’s population through India’s cheaper versions of Sofosburvir. Incidentally this is also the portion of the world’s population that has the highest Hep C infection rates (Egypt has the highest rates of Hep C infection per head of population at just less than 15% of the population, or about one in eight Egyptians carrying the Hep C virus. Complications from Hep C are the fifth highest cause of death in Egypt).
The result of this licensing agreement is that the world’s Hep C sufferers are now divided into two classes: countries where the treatments would cost between $90,000 and $180,000 (depending on the length of the treatment) and countries where Hep C treatment would cost about $1,000 (not the $500 first quoted because the royalty deal with GILEAD pushed up the generic Sofosbuvir prices). Of course the $1,000 cost of a treatment in India, or the $2,000 cost in Egypt, was relatively, almost as expensive to the average poor Indian or Egyptian with Hep C as the $90,000 treatment was to the average Australian with Hep C.
First world countries whose politicians and/or health and government bureaucrats had better negotiating skills than those in Australia soon began to put the squeeze on GILEAD so ( as I understand it) some, like France and Germany negotiated a price of around $20,000 per treatment while other countries (like Australia and the USA) still pay $90,000. Can you figure that out??
It would appear we need to get some new, competent, negotiators in the Health Department.
So I started to research how one got these new drugs out of India.
It turns out that Australian law allows an Australian to bring in a three month supply of a prescribed drug from India. The drug must be prescribed by a medical doctor and the prescription must be with the drug when you bring it in. This is the case with most, but not all, western countries.
The problem is that an Australia general practitioner could not write the prescription because these types of drugs were classified as S1, meaning only an authorised specialist could write the script.
I looked at various options including buying Sofosbuvir on-line but it did not take me long to see that there were some pretty obvious scams in the on-line / mail order Sofosbuvir business and it is generally well known that buying drugs on-line is full of risks and a mine field of scams. Of course there would also be some genuine on-line suppliers but I had no way of being able to discover who was a trustworthy supplier and who was not. So it became clear that the easiest, fastest, safest way to get my Sofosbuvir was to go to India and get it.
I tried to find out if anyone had gone to India and done this before me; I assumed someone probably had, but despite a lot on enquiring and searching I could not find any information, hence the reason I am writing this. (That is to say I am writing this so that there will exist an easily accessible record of the processes I went through to get the Sofosbuvir in India.)
I was also worried, multi-national drug companies being what they are, that GILEAD would be working hard behind the scenes to plug this leak and take control of the global market by making it more difficult, or even impossible, for anyone to get cheap Sofosbuvir out of India and into first world countries like Australia. So I moved as fast as I could and booked a flight to Chennai.
I chose Chennai (formally called Madras) because I had never been there before and it was actually the closest Indian city to fly to from Australia.
Now here I will be totally honest. The trip ended up costing me a bit more than AUS$3,000. I have paid for that using my credit card because I do not have that kind of cash hanging around. Some of my friends and family also helped me out a bit (thanks again, you know who you are).
But what are the alternative options??? There were not any.
Like most people I could not afford to pay the $90,000 for the treatment in Australia. I knew I was not going to get onto a trial and I was not going to get the treatment through the government health system.
So what do I do?
Do I wait around until I develop liver cancer or severe cirrhosis and got sick enough to qualify for treatment? Or did I take responsibility for my own health and go to India and (hopefully) get it sorted that way? It seemed like a no brainer to me.
Add to that the fact that my symptoms were definitely getting worse. My concentration and mental abilities were showing signs of being affected. I was getting bad muscle cramping in my legs and hands, some nights laying in bed, my legs would take turns cramping up. Then there was the fatigue, nose bleeds, a new, dull, pain from my liver.
But with all those (minor) symptoms I was still a long way off being at the level of sickness needed to get government treatment, and I knew that there were lots of people with Hep C who were a lot worse off than me… but I did not want to get worse.
And to anyone reading this who is worse off than me, and I know there will be a lot, I do hope you can get some kind of treatment and that it works for you. For those of you who cannot get treatment through conventional channels, I hope this story will prove helpful for you!
I book my flight to India for the 14th of May. I decided to use a travel agent to book everything so there were no stuff ups but, the travel agent stuffed things up.
The big deal for a trip to India has always been getting the visa organised. My son and his partner had travelled to India the previous year and it had taken nearly six weeks for their visa to arrive, and only a few days before their plane was due to depart. Of course it is always stressful, sending off your passport, waiting for it to return with the necessary stamp and bit of paper.
I decided to allow six weeks for the process, indeed if it had not been for the visa issue I would have left earlier.
I asked my travel agent about it and he printed out some stuff off his computer and explained that if I used this particular visa fulfilment company they would have it done in four weeks, no worries. I was to take the forms home and fill them out then return them, with my passport and he would organise it. The cost for them to courier it to the India Embassy and back, fast tracked would be $60 plus visa fees. I took the forms home and started filling them out only to discover that the travel agent had given me the forms for an Indian citizen who was taking up citizenship in another country and was returning their Indian passport???
So I went back to the travel agent and showed him. He then said we could make the application on-line and we started filling out the form on-line. It was taking a while so I said that I could finish it at home. He gave me the reference number so I could log back on and that night I filled it in and sent it off. I did not hear anything for a while until, with only two weeks to go I sent an email to the Indian Visa Department
Dear Sir / Mme
On April 7th 2015 I filled an online application for a tourist visa to India Ref: 030 704 46 SKUJZRN Application ID AUSM00939315. When I try to check on the status of my application your system does not recognise my Application ID and I can get no information of the progress of my Visa application.
As I am leaving for India on the 14th of May I would be most grateful to know if I have made an error in the application.
Thank you for your help
I received an almost immediate response.
You have applied for the general visa. For the tourist visa on arrival, you need to apply here: https://indianvisaonline.gov.in/visa/tvoa.html
The Indians do IT very well. I used the link supplied by e-VISA and arrived at an online form that took an hour to fill in and submit. In just two days I had my visa approved and a confirmation email with reference number etc.
And I never used that travel agent again.
The reason I tell you this story is to let you know about the new on-line Indian tourist visa system. It is a ‘Point of Entry’ visa and, importantly, in the application form there is box specifically for medical tourism. So when you fill in the form you can fill in as a medical tourist. India is trying to encourage medical tourism.
The story that follows now goes into diary mode as I wrote the remainder as a diary, as it happened.
We are attending the annual croquet day, a day of silly hats, serious croquet and much merriment (and wine). I bump into a friend, M, I have not seen for a while. He notices I am not drinking any wine and I do the tell/explain thing. He knows about Hep C and tells me a mutual acquaintance, Z, has had it for years and had done the Interferon treatment without success. He tells me Z keeps his infection secret but he is telling me because he believes Z will be interested in hearing about the India thing. I tell him to let Z know what I’m doing and to drop in and have a chat. But I never see Z. At the suggestion of another friend I decide to keep a diary and to post a blog of my trip on the internet.
We went up to Byron Bay to stay a few days with my mother and also my sister and brother-in-law before I leave for India; after ten days of surf and sunshine I am feeling pretty good but I can definitely feel the virus in me now, feeling a bit bloated in the torso and just aware that things in my body are not quite right. Glad to be heading home to Tasmania and glad that I have initiated the India trip and will be able to do something proactive to try to kill the virus off. The idea of a colony of viruses living in my liver is really annoying me!
The flight back to Tasmania is long and tiring because we have to do a stopover at Sydney. Also we know that immediately we get back home we will only have time for a quick rest and then off to the annual Poetry Night, of which I am the MC.
I am to read a poem in honour of one of our close friends, who I mentioned earlier, who had liver cancer. He has died. I am to read Henry Lawson’s poem The Glass on the Bar, which is about remembering friends who have died.
We stop at the fruit shop on the way home from the airport and bump into Z’s wife, who I have not seen for years.
A strange coincidence.
She immediately wants to talk about Z’s Hepatitis C. She tells me that M told them about our conversation at the Croquet Day and she and Z had been talking about it. She say that Z (unlike me) has no idea how he got Hep C and that (unlike me) he had never shot up drugs. She gave me the impression that she thought the less of me for having been a drug injector, but that was probably just my imagination.
She mentioned that Z did not want anyone to know that he had Hep C and asked that I respect this. She then went on to explain that Z had undergone the Interferon based treatment some time ago and that the side effects had been terrible “like Chemotherapy” she said. The worst thing was that after almost one year of treatment at the end the treatment Z still had Hep C.
She also told us that she had not contracted the virus even though they never used protection during sex, which confirmed what the nurse had told my wife and I.
Only ten days before I leave for India. Now I start to worry, wondering if I have done the right thing? Have I just wasted $3,000? What if I get to India and cannot get a doctor to prescribe the drug for me? What if I go to India and come back with fake tablets? They say that it happens often enough (whoever ‘they’ are).
I went to my GP today to get a final blood test and have a chat. He was very supportive and explained to me just how important India and Indian pharmaceutical companies had been in reducing the cost of HIV drugs in the 1990’s. My GP worked in an AIDS clinic in Africa during the early 1990’s and he told me how, because of the high cost of the HIV drugs then, getting HIV was basically a death sentence for most of his patients. Then the Indian government had decided to ignore the patents on HIV drugs and started manufacturing and supplying cheap HIV drugs for Indian patients and also those of its African neighbours. It was a win/win situation. India’s neighbours got cheap HIV drugs and India got business.
My doctor said that all of a sudden his clinic was able to help people with HIV. This continued for a couple of years while the big multi-national drug companies put more and more pressure on India to try to stop them supplying the cheap drugs. India did not budge.
Then Big Pharma put pressure on the government of the particular African country my GP was working in. The government was told either it stopped using the Indian generic brands or all its funding from the World Health Organization would be stopped. So the generic brands were stopped. Suddenly my doctor’s Clinic had no access to the cheap Indian drugs and people started dying again.
According to my GP thousands and thousands of people in his Clinic’s care region died before pressure from powerful individuals such as Bill Gates and Bill Clinton and various NGO health organisations reversed the process and the India generics were allowed back into Africa.
By another strange coincidence, as I was walking from the doctor’s surgery to Pathology to get my final blood tests I bumped into Z’s wife again. That was too weird, to bump into her twice in three days when I have not seen her more than two or three times in the last seven years.
Interestingly I had been thinking about Z as I drove in, thinking about his situation and I mentioned this to her. I told her that I would be happy to bring back an extra treatment pack of Sofosbuvir for Z if I could but she told me that he had seen the doctor last week and had been informed that Sofosbuvir was going to be approved by the PBS in June and that Z should be able to be treated because his health was pretty bad and because the Interferon treatment had failed. I hope she has got the correct information because I know that our government is cutting back hard on public health benefits.
A week until I leave for India. Jan and I worrying a bit about whether we have made the right decision as the fare and other costs have been significant. I’ve only booked to stay a week in India and we worry about whether that will be enough time to find the right doctor, the right pharmacist and get the script and the drugs. I guess it’s just buyer’s remorse because really there is no other choice. The Abbott government is cutting back on medical subsidies of drugs, so a lot of people with cancer and other chronic health issues are going to suffer because they are not going to be able to get the latest, most effective medication. All those cut backs are pretty abstract until it’s you, or someone you love, who needs the latest medication.
At least, thanks to the Indian government having enough balls to stand up to the big, multi-national Pharmaceutical companies, I have a choice, an affordable choice. I know Z’s wife said that if he could not get on the Sofosbuvir program soon they might have to sell their house to get the $90,000 for Sofosbuvir. I told her she should just get over to India but she said she had heard that the Indian option was not reliable, that there were lots of fake drugs. Whilst the fake drug thing is obviously a concern a bit of due diligence should reduce the risk. Fake stuff exists in all areas of retail, particularly in Asia, however the chance of buying a fake Rolex does not mean that there are no real Rolexes out there and it is just a matter of ding your homework and finding a reputable dealer who is an authorised Rolex reseller.
Went over to the pub for dinner tonight, there was a good crowd of locals there and the word had got around that I’m off to India next week. Everyone wished me well and hoped that everything worked out well. I find it interesting that so many people are scared or ashamed to admit that they have Hep C. yet everyone I know knows that I have it and how I got it and everyone has been really supportive and kind. It’s great living in such a supportive community.
Been battling with exhaustion the last few days and having to take an hour or two of sleep mid morning. I can feel that damn virus inside me, slowing me down. I bleed a lot easier from any little cut now, bleed easier and longer. I’m also getting nose bleeds now. Every time I blow my nose I end up with a glob of blood in the handkerchief. Jan reminds me that my blood is dangerous, infectious, and that I have to be certain I clean it up. She uses bleach on my handkerchiefs. I hate having dangerous blood!
Glad that I have got the trip booked and there is a good chance I will be rid of this thing in a few months.
One of my neighbours told me that there was a big advertisement in the local newspaper about Hep C while we were up in Byron Bay. I’ll have to see if I can find it.
May 10th 2015
I’m really noticing that I am bleeding too easily now, the slightest scratch just bleeds and bleeds, apparently the damage that the Hep C virus does to your liver effects the level of platelets in your blood. I am glad I am booked to leave for India this week.
Last night I spend a bit of time Googling along a few different keyword lines and came across an Indian site called www.dropshipmd.com. This is a company based in Mumbai that sells all of India’s generic Sofosbuvir drugs, mostly those licence by GILEAD. They sell them mail order and they can be purchased by anyone with a prescription. You can also just visit their office in Mumbai and buy the Sofosbuvir over the counter for cash but again one needs to have a prescription with them.
Their prices, US$1,500 for a 12 week course, seem a little higher than the “street price” but that is only on here say because I have not been to India and don’t know the actual street price. Even at US$1,500 it’s a lot cheaper than the $90,000 that the same 12 week course would cost in Australia or the USA. I guess if one can get a co-operative doctor in India to write the script there would be a way of doing the whole transaction without having to fly to India. I guess I will have a lot more answers this time next week.
(Please note: Since writing this section I have discovered that dropshipmd.com is probably a dodgy operation and I would not recommend them. I am currently working hard to find a reputable mail order supplier, if that is your only option. Personally I think going to India is the best option if you can afford it.)
I have just read a report on the annual costs to the Australian health system of Hepatitis C. At least $300 million per annum, over ten years this is $3 billion minimum.
As there are between 250-300,000 people known to be infected with the Hepatitis C virus in Australia and the Government could save at least $2 billion dollars by setting up an easy way for people to buy their medication from India.
It would not take a lot of imagination to figure out an effective vehicle through which this could occur. It simply needs a couple of doctors hired in India to write prescriptions for their Australian patients, whose details, medical reports etc. they could receive by email and then have a Skype consultation then write the prescription.
Then a couple of people to buy the generic Sofosbuvir from one of the several reputable companies manufacturing it there and organise it to be shipped direct to each individual person with Hep C. Apart from the savings hundreds of millions of dollars of saving to the Australian health system it would also very quickly end the suffering of most of the 300,000 people now suffering the debilitating effects of Hep C.
Unfortunately we seem to lack people with visionary, creative qualities in both our government and in our Health bureaucracy.
May 14th 2015
Off to India at last.
I am writing this at Melbourne Airport waiting for the flight to KL and then on to Chennai.
This morning I got a few emails from folk who are following my diary on the Internet. Some questions about prices of the generic brands in India which I could not answer. I expect to have a clear understanding of the prices and procedures by Monday but, as I find stuff out, I will post whatever information I discover.
I really do hope that this blog is useful to folk. Having been through all the Hepatitis C turmoil over the last nine months, and the frustration of knowing that there is a good, effective drug that would cure me available but that it’s so expensive that I cannot afford it: well it is terribly annoying and frustrating. So I hope this story helps folk to get cured themselves.
And I have to say (again) thank God for India; for India being brave enough to stand up to Big Pharma and make this drug available to its own people and all the other people of the world.
Our own politicians are too scared of the USA and the big multinationals, even when it comes to saving the lives of 250,000 Australia citizens and saving the Australian health budget billions of dollars. Our politicians will spend heaps of time and money trying to save two convicted drug smugglers on death row in Indonesia ( and I am not saying that is a bad thing) and they will bully and threaten the Indonesian government about it to save two Australian lives. But when it comes to saving hundreds of thousands of Australian lives by standing up to the big pharmaceutical companies, not a peek from our Prime Minister, not a word: does he even care?
Good on you India for caring about your people and standing up to the bullies.
Later on the 14th
On the plane…. flying over Indonesia at 11,000 meters on Malaysian Airlines: a few hours before we land in KL and then on to Chennai Airport for a midnight arrival. Yes I’m travelling Malaysian Airlines but not at all worried about a plane crash. In fact I chose Malaysian Airlines because, statistically, it is SO unlikely that anything could happen to another one of their flights (unless you happen to believe that bad things come in threes). I also chose Malaysian because I figured that lots of people would choose not to fly with them and there might be a bit of room on the flight and I was right! The plane is half empty and I get four empty seats to stretch out on, pure luxury! So as I drift off into that aeroplane half sleep I find myself wondering/worrying what will happen when I wake up tomorrow and go out to find a doctor in Chennai ???
Is there going to be some kind red tape nightmare getting the prescription?
What if I have to see a specialist and cannot get an appointment within the time that I have?
What if they do not accept the Australian test results and want to do all their own tests?
There are so many things that might stall things. I’m only in India for seven days. Maybe I should have given myself more time?
But, of course, there is the other possibility that everything will go smooth and the first doctor I see will write me a prescription and the first chemist I go to will have the Sofosbuvir in stock.
I will hand him the prescription, he will hand me the tablets and all will be well.
7 a.m. I’m writing this entry from my room at the Taz Karma Inn.
I got out of the plane at Chennai Airport at about 1 a.m. I was pleasantly surprised by the cleanliness and modern layout of the airport. Even the air conditioning was working.
Walking down the long corridor from the plane to Immigration and Customs clearance I noticed all those little things that remind you that you are in India. The half finished painting of the walls, the spilt milk shake laying in the centre of the polished concrete walkway, where it will lay for hours yet as people walk around it, until the designated milkshake cleaner, from the appropriate caste comes to clean it up.
At the migration barrier I go to the line marked out for foreigners. I was the only foreigner on board that flight of several hundred people, so I stand alone in front of the foreigner desk.
After standing there about ten minutes waiting for someone to come I start to wander around looking for someone in a uniform. I find a cluster of uniforms gathered around an office doorway chatting. I wave to them and they wave back and smile. A gentleman detaches himself from the group and comes over to me.
“Yes sir, how may I help you?” he wobbles his head and smiles a big smile. Teeth in India are so white!
I explain that I wish to enter India and need someone to stamp my passport and let me through. Another smile, he asks me to please wait and walks off. Soon another gentleman arrives and ushers me back to the foreigner desk that I had been standing at before.
I hand him my passport, he flicks through it looking for my visa, but of course, cannot find it. I explain that I have an on-line issued point of entry visa and hand him the email receipt. He is not familiar with these and heads off to find a superior who comes back, looks at the email, shows the first fellow which stamp to use, smiles at me, wobbles his head and then goes back to the conversation cluster.
Next I must be photographed and fingerprinted by the new biometric technology. The first problem is that I am too tall for the camera; at a pinch under 6 foot 5 inches even twisted to its maximum elevation the camera will not photograph my entire face. We eventually solve this little problem by having me kneel in front of the camera. From the corner of my eye I see that the conversationalists are all watching this interesting diversion, big smiles all.
The next little problem is that my fingers are too large for the finger print scanner. My immigration officer tries to solve this by repeatedly wiping the glass of the scanner however this does not work. We eventually solve the problem by being satisfied with slightly imperfect scans of my fingerprints.
It is all very jolly and, once all is done, I am waved through a special pathway that bypasses all the queues of non-foreigners
In the baggage claim area there is a money changer. I learn later that the rates there are the worst you will get anywhere. However I need rupees so I change twenty dollars and get about half what I would get anywhere else. If you are doing this route, change a few dollars in Malaysia or Australia or anywhere else first. The exchange rates in Chennai itself are very good so you only need to have about $20 worth of rupees to get to your hotel.
Anyway I got politely ripped off at the Airport money changer and then went over to wait for my baggage. However as I was waiting I felt the call of nature and, with some trepidation, went off to the public toilets. I had bad memories of public toilets from previous visits to India. The entrance to the toilet had a big sign saying “Passengers Only”. There was a reason for this and I was pleasantly surprised by the cleanliness therein.
Once relieved I returned to the baggage carrousel to await the arrive of my one, very heavy bag.
And I waited. Bags slid past me and people grabbed them and dragged them away. One very small Indian, in an expensive suit, tried to grab his very large bag as it slid past him. He grabbed the bag’s handle but was unsuccessful in his attempts to pull it off the carrousel. Whilst he could not move the bag, the bag could move him and, as he refused to let go of the bag, he was half dragged by it toward the end of the carousel as he shuffled along tugging at it until one of the baggage wallahs came over and helped him lift it off.
The baggage wallah stood proudly beside the rescued bag smiling waiting for a tip but the little man ignored him completely and simply grabbed his bag and rolled it towards the Customs queue.
And so I waited, watching folk collect their luggage and trundle over to the Customs queue and then out into the night. Eventually I found myself alone at the baggage carrousel watching one lone bag, which was not mine, go around and around as a rising feeling of panic rose in my chest.
It looked as though my luggage had been lost en route . I was on the verge of freaking out when I realised I was actually waiting at the wrong baggage point and, looking across the room saw my bag all alone going around and around on the other baggage conveyor belt.
A smiling baggage wallah was standing beside the other conveyor belt. He smiled as he saw me walking over and pointed to my solitary bag and wobbled his head to indicate that there was nothing to worry about and that he had been guarding the bag for me.
I thanked him gratefully and handed him a tip, I can’t recall if it was 100 rupees or 500 rupees… things were getting a bit blurry in my head after nearly 24 hours of flying. I hope it was 500 rupees.
Walking out of the airport building into the thick, musty, almost rancid perfume of Indian air, I realised once again that some things never change.
I paid 480 rupees for a taxi voucher at the government taxi booth and walked into the crowd that milled around the separation barriers, waiting for the return of loved ones. A smiling man saw my voucher and pounced on me politely, leading me to his little Morris Major taxi without asking me where I was going. Once he had me and my bag safely in his cab he enquired as to my destination.
When I told him I was going to the Taz Karma Inn at T. Nagar a puzzled look spread over his face. I said it again more slowly but of course he did not understand my Australian accented English just as I could not understand his Tamil accented English. Fortunately I had written the hotel’s name and address on a piece of paper and showed him that. Unfortunately he still did not know the hotel but did know where T. Nagar was and so we headed off into the night.
It was somewhere between two and three in the morning and still there were traffic jams, piles of rubble, half finished eight lane highways, people sleeping on the broken pavement. So familiar, so foreign. To find the Taz Karma my taxi driver did not use a map or a GPS, he just pulled over and asked people for directions. After a few queries he soon had me at the Taz Karma where the concierge was awaiting my arrival. After the genuine welcome and the formal signing in ceremonies I was in my room. I turned the air conditioning to 18 and collapsed into a very comfortable bed.
Of course I woke a few hours later as my body clock thought it was 10 in the morning but it was only six so, as breakfast was not served until 7.30, I went for a walk around my new neighbourhood.
Early morning is the one time that Indian streets are quiet and relatively empty. The garbage collection trucks rumbling along to pick up the piles (big piles) of rubbish heaped at the end of every street; where the occasional dog foraged. I noticed that India’s rise up the affluence ladder was obvious in the rubbish heaps. There was clothing and toys and food that one would never have seen in the rubbish heaps ten years earlier. It is interesting that prosperity seems to equate to waste.
I noticed as I walked between the muddy puddles of the pot holed streets that there were a few doctors and chemists on the block near my hotel but I must wait until about 10 before anything opens. I might get a shave from a barber before I go and see a Doctor to get a script. It would be very convenient if I found a doctor five minutes from the hotel.
What a day!
First I had breakfast. I was surprised to see that the buffet breakfast included only curries, apart from some white bread for toast and jam. Breakfast was curries and the various little flat breads and rice that go with curries. They were delicious curries and lovely breads and I knew I was in a hotel that catered for Indians not Westerners. Cool.
The waiter immediately asked me if I would prefer an omelette for breakfast but I, the proud adventurer and experienced traveller, proudly stated “No I am in India and happy to eat curry for breakfast.” He looked impressed (However after a few days of curry for breakfast I regretted my boastful ways because my pride would stop me from asking for an omelette).
After breakfast and copious amounts of delicious tea Marsala (Chai) I walked up the street to see if the doctor was open.
The sign on the door said open 10 a.m. in the morning until 1pm and then open again at 3pm until 5pm. It was ten but it was not open so I went for a walk around the block for ten minutes.
I notice that Chennai is very Indian, very Hindu. Almost everyone had a painted spot on their foreheads, a bindii. The women all wear their beautiful and colourful saris; the men wear trousers and a collared shirt. I notice that, unlike Delhi, women are everywhere adding colour to the bustle of the streets. I walk around the block, sweat starting to build on my forehead as the heat of the day increases. Back at the doctor’s place he is still not open so I knock on the door for a while until someone opens it.
A youngish gentleman peeks through the door and listens to my request for an appointment then goes away. I hear some rapid talking in another room and the young gentleman returns to inform me that the doctor was not in. I asked him what time the doctor would be in? He went back to the other room, more talking and he returns to inform me that the doctor would not be in for several days as he was at a meeting. I got the distinct impression that the doctor was actually in the other room and was not inclined to see me.
So I went back to my hotel room to check my emails and found an unexpected email from G. who runs a Hep C support group in Thailand. He told me he had been reading my blog and that I should get in contact with a guy he knew in Chennai who was currently being treated for Hep C with one of the generic Sofosbuvir brands. This was exciting and unexpected news.
So I phoned S who told me to come around and see him quickly because his treating doctor was about to go on holidays for two weeks and I would need to see him this afternoon if I wanted to get a script. Once I had the prescription S said it would only take an hour for him to organise the Sofosbuvir.
So I got his address and went downstairs, two khaki clad policemen were resting on the lounge of the hotel’s air conditioned foyer. It was about 11.30 and the day outside was warming up; the predicted temperature was “an unseasonably cool 38 degrees” said the weather forcaster on the television.
I showed the address of S to the concierge and asked him how much that would cost in an auto-rickshaw; he wobbled his head and thought and suggested about 250 rupees but then told me that the auto would have a meter that would make it exact. Then one of the policeman stood up and sidled over to the desk and asked to see the note. He studied it, thought for a moment and then said, “This should be a maximum of 250 but if you take the bus it will only be 50 rupees, a big saving sir.” I smiled and thanked the officer very much for his advice but explained that I was in a bit of a hurry and would probably (certainly) get lost on the bus. The officer smiled and politely explained that Chennai’s bus system was very simple to use before he retreated back to the lounge.
Outside I found an auto-rickshaw and gave the driver the address and asked him if he knew the street. Of course he did and so, full of confidence, off we drove. I noticed that the meter was not turned on; rather it was making an unhappy beeping sound. I pointed this out to the driver who wobbled his head and with a very serious, slightly sad expression explained, “Oh sir the meter is broken.” Of course it was.
So we drove through the heat, the traffic and the dust occasionally stopping to ask directions from pedestrians or other auto-drivers. Auto drivers and taxi drivers always know, and do not know, where your destination is, if they do not know it they will not admit it but they will ask everyone until they find out where they are going, no matter how long it takes. Ah India!
Sitting in the back of the auto, watching in astonishment as we weave our way through the endless, bumper to bumper traffic without a crash or bump; through the dust and heat and crowds, listening to the beeping of the meter that does not work (just for me). I start worrying about the upcoming meeting with S. I worry along these lines.
“Right this is almost certainly a scam, the classic setup. Put time pressure on so I have to rush my decisions and then sell me a few bottles of fake tablets.”
So I start planning my strategy. I won’t be rushed. I will be respectful and explain that I have been ripped off in India a few times in the past (true) and I will want a couple of days to do ‘due diligence’ before I part with any cash.
Finally we find Harrington Street, it took longer than one would have thought to find the street and longer to find the actual house… but we do.
It is a two story house with a paved front yard and high steel gate with a large “Beware of Dog” sign riveted to the gate. I start to open the gate and my driver grabs my arm and points to the sign. “No sir, there is the dog inside.” I shrug, I’ve come too far to worry about dogs and dogs usually don’t bite me so I enter as my driver retreats to the safety of his auto. I have arrived at the home of S mentally prepared to haggle and weave my way through an elaborate dance of politeness and lies that is common enough in Indian business. Now I ready myself to befriend a guard dog.
Of course there is no dog.
A voice calls me from the upstairs veranda, a hand waves, “Around the back stairs please.”
S has the upstairs section of the house although I cannot clearly see him because he is seated.
I climb the stairs and S is waiting for me in the doorway. I remove my shoes at the door and enter.
I am affectionately welcomed; we are fellow sufferers under the yoke of a common foe, hepatitis C, almost brothers in arms.
As we shake hands and as S guides me through his house to the veranda I see that he is exhausted, wasted. He explains that he has had a relapse a few months back after been given a clean bill of health after an Interferon treatment several years earlier. His viral count was now way up and, because of the geno-type and some other factors I did not quite understand S was having to use the Sofosbuvir in conjunction with Interferon and something else.
S is probably in his late forties or early fifties. Like me he contracted Hep C from shooting up when he was in his early 20’s. He had a successful career and, when he found out he had Hepatitis C, he had told his boss the truth. His boss was understanding and has stood by him. S said he probably missed out on a couple of promotions because of the Hep C but he was happy that he kept his job.
He explained that the doctor he was seeing was a gastroenterologist with one of the large hospitals in Chennai, the Appolo, and that he was going on holidays for two weeks and today was his last day. S wrote me a letter of introduction and told me just to front up at the hospital and bluff my way into the queue of people waiting to see the doctor. He told me once I had the prescription then there would be no problem getting the Sofosbuvir either as one of the generic brands or in the form of GILEAD’s actual Sovaldi.
I felt very comfortable with S and forgot about all my worrying about rip offs and scams.
S’s wife typed out a letter of introduction for the doctor and S signed it and attached his business card.
S’s wife was very charming and, like S, she spoke English perfectly, havig lived ten years in Canada. We had a (non-alcoholic) drink together and then I went down and got my driver to drive me back to the hotel where I picked up all my medical reports and then onto the hospital. Of course my driver’s meter was still ‘not working’ and beeped all the way to the hotel and back to the hospital. Of course my driver knew where the hospital was and after a lot of asking and driving around he did eventually find it.
Here the driver and I came to a crisis point in our blossoming relationship, I wanted him to wait for me so I did not have to go through all the trouble of finding a driver to take me back to the hotel. For some reason my driver did not wish to wait for me, which I found rather annoying but that was that. I changed my mind about how much I would pay him and handed him a one thousand rupee note. It looked at the note without taking from my hand.
“Oh no sir, that is not enough! I have driven you many places, it should be two thousand.”
Of course because his meter was ‘broken’ this was a very subjective judgement on price and it might have worked had I not checked with the hotel staff first. They had told me about 250 rupee for the one way trip. We had done three trips of about the same length so 750 was about the right price. Had he waited for me in the shade of a spreading tree I would happily have paid him the two thousand once he had returned me to my hotel but now I was in no mood to haggle. I gave him the 1000 rupee note and walked off with him walking beside me haggling and demanding more money. Of course he could not leave his auto so he soon gave up the chase and returned to where ever it was he wanted to be.
Navigation in the hospital was an interesting process, not a scary as trying to find the correct train at an Indian railway station but still an interesting and challenging affair.
The Apollo Hospital was a grand modern and vast structure situated in the centre of an affluent suburb of treed avenues and large homes.
The road entering the hospital’s precinct ran under a massive whitewashed stone arch with cars and people moving effortlessly together sharing the road and ‘footpath’ with equality. Entering the foyer of the first building I came to I asked a security guard for directions to the Gastroenterology Department. The guard smiled, wobbled his head and point over the heads of a thousand people and said,
“Use the elevators please sir.”
I smiled in return, thanked him and headed off in the direction that his finger pointed.
The main foyer of the Apollo contained perhaps 2,000 or more people, women and men and children and grandmothers and grandfathers. No animals allowed.
The women all dressed in the spectacular saris and the men all dressed in trousers and collared shirts apart from a few grandfathers who still clung to wearing the infinitely more comfortable traditional dhoti.
Weaving through the crowd I eventually reached the elevators, there were two elevators, with two uniformed guards guarding the doors and keeping the two or three hundred people waiting in the elevator queue from overcrowding the elevators.
I saw a sign stating that the Gastroenterology Department was on the second floor and noticed a wide, empty stairway going up beside the elevators. Of course in India, where power failure is a regular and expected event there must be large stairways in such buildings.
I was on the ground floor the Gastro department on the second floor. There were about 200 people waiting to get into the elevator. The unused stairway beckoned and two minutes later I was on the second floor where, in every direction, corridors ran away out of sight.
I will not describe the process of getting to the Doctor’s waiting room other than to say that asking Indians for directions through a labyrinth of hospital corridors always gets the same response, a smile and friendly wobble of the head, a finger pointing and:
“Oh yes straight down there sir.”
Which actually means “Turn left at the first, right at the second, straight ahead until you come to the end and then take a left.” Indian folk will not usually give you complicated directions because they understand that you will not be able to remember them so, rather than cause you the distress of forgetting the directions they just say: “Straight down there.”
That said the hospital staff, when I eventually found myself standing in front of the correct counter, were very professional, efficient and generally very helpful.
Unfortunately when I presented the letter that S had given me and explained the situation to the Gastro’s receptionist she smiled and asked,
“But are you registered at the Hospital sir?”
“Well then you need to register on the ground floor at the reception area for foreigners.”
So I walked back through the labyrinth down the stair and back into the main foyer. There I saw an office with Foreigner Registrations written above the door, several Africans and an Arab stood in a short queue at the door. I joined them and waited. About ten minutes later I sat at a desk before a friendly young man who was particularly interested in sharing jokes with the young woman working behind the other desk.
He glanced at me then stretched out one hand and asked ,
“Your registration papers please.”
“I thought that this was where I registered?”
“No this is where you register as a foreigner, first you must register as a patient of the hospital and then you must register as a foreign patient. Please go to the registration desk first register there and then return here.”
He smiled and pointed out the door and then returned to chatting and joking.
So I joined the queue at the new patient registration desk after a few minutes I reached the front of the queue and stepped across to the counter. As I stepped to the counter the person behind the counter, carefully avoiding eye contact with me stood up, turned around and walked away without a backward glance. I looked at the other people working behind the counter but none of them glanced at me. I turned around and noticed the queue in which I had been standing had disappeared as people quickly melted into other queues.
With a sign a joined another queue, eventually stood before one of the registrars.
“So you have an appointment with Dr Muragan?” he asked when I explained what I was doing there.
“He is expecting me,” I answered.
“So you have an appointment?”
“Yes,” I lied.
“But how can you have an appointment if you are not registered?”
“Oh a friend of mine is a good friend of Dr Muragan so he arranged it for me.”
That seemed fair and it worked. A head wobble, a shrug of the shoulders and I got my form, paid my 200 rupee registration and took the receipt and my patient number to the foreign patients registration office and rejoined that queue, eventually paid my 800 rupee registration fee and was handed a folder with my details in it and walked back up the stairs and through the corridors to the Gastroenterology department where I handed in my form and paid another 200 rupees to register with that department and another 200 rupees for Dr Muragan’s fee and then watched at my folder was slid under a huge pile of other folders.
“Please find a seat and be waiting please sir,” the receptionist smiled indicating the waiting room.
The waiting room had many chairs and plenty of standing room so there I waited with about 40 other folk who found the fact that I was both white and very tall and did not speak their language an excellent diversion from the monotony of waiting for their appointment with the doctor.
All very good natured of course. I got several handshakes, offers of food and numerous “Where are you from sir?” On the discovery that I was from Australia cricket and all things and people associated with cricket became the topic of conversation; short friendships are made by the discovery of common interests.
I became the waiting room’s “white height” guy. As I say all very good natured in a happy head wobbling way.
Several more hours passed and I had engaged in so many conversations about cricket and how to be getting “ a visa for my son to Australia” that I was on the verge of learning to speak Tamil when one of the nurses handed me my folder and told me I was the next one in to see the doctor.
The doctor was a fellow about my age, maybe a bit younger. His specific interest was livers and when I explained my situation he told me that he could not just write a prescription for Sofosbuvir because the hospital had certain procedures that had to be followed first. Certain tests needed to be done and they could not be done this afternoon and, as he would not be back from holidays until after I was gone back to Australia, then it was all very unfortunate and he was most sincerely sorry.
Oh dear, my worst nightmare, I had not given myself enough time.
But he was a compassionate man. I explained to him my situation in detail. I then showed him all the recent tests and the historical ones that I had brought with me for exactly this purpose. Fortunately I had a great wad of paper containing all the results of all the tests that I had done over the preceding months. I had sorted through and organised these during the long hours in the waiting room.
As it turned out I had everything he needed in the test results department except one, the Fibro Scan. Now I had actually had a Fibroscan at the Royal Hobart and it had showed no issues with my liver however for some reason I did not have a copy of the results.
Again the Doctor was very kind and told me that he would write the script for the Sofosbuvir and Ribavirin provided I promised to have a fibroscan the next day. I made the promise and he wrote the script. He also said that I was lucky having genotype 2 because it was the easiest one to treat and it would be killed off with only a 12 week course of Sofosbuvir (one tablet per day) in combination with a course of Ribavirin (3 tablets twice a day).
That said I recall that my mate K had genotype 1 and during the trials he was involved in back in Sydney his virus was cleaned up in 12 weeks also. Of course I did not know exactly which drug, or drugs, he had used.
Anyway we had an interesting discussion about how the Hep C > Sofosbuvir thing was being handled in Australia and other first world countries. He was interested to hear how the government was only using Sofosbuvir to treat the very sick. He said that in India they had started that way in the earlier days with the Interferon based treatments but soon realised it was false economy and that it was much more cost effective to treat people before they sustained serious liver damage. This also seems very obvious to everyone I speak to on the subject!
We then discussed a little of our personal histories. He explained to me that he had done his medical degree in Edinburgh in Scotland and his MA in London where he had worked as a Gastroenterologist for about 12 years before deciding to return to his home in Chennai. He was going to the Greek Islands with his family for a two week holiday. It was a good time to leave Chennai with the temperatures regularly in the mid 40’s.
He then gave me the business card of the Mylan ‘distributor’ and suggested I phone him to arrange the delivery of the Sofosbuvir.
So tomorrow I will go off for a fibroscan, that will cost me about 8,000 rupees ($150) and I do not know what the tablets will cost yet. I will phone or email the supplier tomorrow and find out. I am expecting the three month treatment to cost me about $1,000 or so, which means that with the cost of the hotel, the airfares, food and other expenses the whole thing will have cost me a bit over $3,000.
To me that’s a small price to pay for avoiding cirrhosis or liver cancer. Not to mention getting rid of an evil virus that basically screws up your whole life from your brain to your toes.
Well it’s looking pretty good. I will post exact figures on costs tomorrow. Next week I will also investigate other options such as not going through a hospital and just getting a prescription from a normal GP. My plan is to examine all the options for acquiring generic Sofosbuvir and publish them on the internet.
It’s five in the morning. I woke up about an hour ago with my body clock still on Australian time and thoughts and doubts swirling through my head. What if it is still some kind of scam? Why am I buying the Sofosbuvir from some guy who is the ‘distributor’ and not just picking it up from the pharmacy? I wonder if the Doctor is really going on holidays. How did I get to see the specialist just by hanging around in the waiting room? All that kind of stuff that spins through your mind when you are laying in bed in the dark wishing you were asleep. But I remind myself that this is India and things run differently here.
And as you see I could not get back to sleep so I switched the light on and checked my emails.
A few folk have been reading these posts and emailing me. Strangely the first email I read said:
Hello, I had read your today’s notes. What a trip!:)
But I’m still unclear about one thing: are you planning on buying original Sovaldi (sofosbuvir 400mg) or generic sofosbuvir 400mg, like MyHep or Hepcinat or others? Is it possible to buy that cheap original Sovaldi? And why do you have to go through a distributor ? Why can’t you just go to the pharmacy, with your prescription? Thank you kindly for your reply. Good luck tomorrow!-B.
That was weird because it was just what I had been laying in the dark thinking about. I have not replied to B. because I’m still thinking about it. I will contact the distributor guy today and see what the story is: and what the price is.
Another email read:
Dear Greg What do you think of this email I received?
Glad to know your inquiry at drugsrusdelhi.com
Yes, You can buy Hepcinat 400mg from us.
you can buy online by Register in our website. Here you can place the order directly.
You can also place the order manually here. We will provide you our Company Bank Remittance details, As soon as we receive the payment confirmation will send your package same day by REGISTERED EMS speed Post.
Best Price : 418.70 USD / BOTTLE (including shipping)
If have any more queries, Please write us.
I replied to this email because it is almost certainly a scam:
Thanks for the email. I would be cautious because all my advice is that it illegal to export any of the generic Sofosbuvir brands from India without a prescription from a medical doctor. Further it is illegal to import them in many countries without a prescription. Thirdly there are certainly a lot of scams selling fake Sofosbuvir. That all said I know nothing about this company but I would be very cautious
Anyway, these are the issues, the things that are going through my head this morning. In a way it is a summary of doing business in India, there are many very good and honest people, most are, however the dishonest ones are usually very proactive and give the good folk a bad name. I am going to try to get back to sleep now. I will post the results of how things work out today when I get back this evening.
Exhausted… that’s the only word I can think of at the moment. I need a shower and a little lay down but I will push on and write something before I collapse.
Today I did my first tourist thing and went and visited Fort Saint George where the British Honourable East India Company had their main base in Madras for the couple of hundred years that they ruled here. It was at Fort Saint George and in the surrounding settlements that the family of Hugh Macintosh, the main man in my book about that period, lived.
Anyway after the Fort I went to the hospital for my Fibroscan, that’s after my driver, Raj, informed me that police are the most corrupt, then government officials and then doctors. Just what I did not need to hear.
So I waited around for a couple of hours and renewed my acquaintance with two families from Bangladesh who I had been waiting around with at the hospital the previous day. We were bonded by having consulted the same doctor and were now bonded by waiting to have the same scans. Well I was better off because I was only having a Fibroscan whereas both of the other gentlemen were getting colonoscopies as well.
Well I had my Fibroscan today. It’s “a lay on the bed, roll up your shirt, hands behind your head ” and then the doctor presses this probe thing firmly against the space between my ribs on the side over my liver. A little hammer in the probe thumps the flesh and a sensor reads the vibration that is set up in the liver. Liver elasticity test is another word for it. I did have one at the Hep Clinic in Hobart but this Chennai test was much more detailed, about 15 minutes of little rib thumps.
Of course the fact that I was too long for the bed caused the doctor and nurse some amusement as they chatted with me about my family and why I did not get the scan done in Australia. It was too complicated to explain so I just said it was part of another treatment I was getting in Chennai.
Once the thumping was done the doctor told me to come back in a couple of hours to pick up the results and take them back to the specialist centre.
Here I have to confess something.
When I picked up the results I did not take them back to the specialist centre but took them to photocopy and then back to my hotel room for a bit of a session with Doctor Google. Heck! My specialist was not there so it did not matter if I took the results back on Monday.
Now for a little shock.
As I mentioned earlier I had been given Ultrasound and CT scans of my liver and they both showed no signs of cirrhosis or tumours. That was a relief.
Now I discovered, thanks to Dr Google, that the Fibroscan results showed my liver at the bad end of the Fibroscan waveband, that’s F4 in Fibro language. It means I have fibrosis heading towards cirrhosis.
Which in turn explains why I have not been feeling too well of late.
Which in turn makes me glad that I bit the bullet and came to India because if I sat around back in Australia waiting to get sick enough to get treated, well according to Fibroscan by next year I would be very sick. Advanced Fibrosis can turn quickly to cirrhosis, then maybe even into liver cancer. However if I start my treatment next week I should be able to kill off the Hep C virus before the liver damage gets worse and give my liver a chance to repair itself (which I hear livers can do very well if given the chance.)
This brings me back to the point of who thought up the great idea of waiting until we Hep C sufferers get REALLY sick before giving us access to treatment????
How dumb is that? What happened to early detection and intervention? Are we being treated differently because some of us (certainly not all) got Hep C from using drugs decades ago?
(At this point I am strongly resisting the urge to write swear words in capital letters and underlined directed at self righteous politicians and health bureaucrats )
Anyway that’s part of my news for the day, the rest is as
Today I sent an email to the ‘distributor’ whose card the doctor gave me. The email bounced back.
This was worrying. I checked that I had spelt the email address correctly and I had. It seemed strange to me that a pharmaceutical distributor’s email address on his card would be wrong. It’s worrying but I will phone him on the phone number on the card tomorrow and see what happens. Perhaps there is a simple explanation? Everything is done differently in India and people seem to use their mobile phones rather than email.
But, as B asked, why was I buying the Sofosbuvir off a distributor and not from the pharmacy?
Because I have put this little diary out on the Internet I have been getting a few emails, mainly from people who found out about my journey from Hep C forums.
Some of these folk have asked me questions and some have offered me detailed advice about prices of the various generic brands of Sofosbuvir and other stuff.
One very kind Indian gentleman also emailed me with an excellent explanation of how the distribution system of some types of drugs in India works. Now there are pharmacies in India, I have seen them, but there also distributors from whom one can buy direct; if one has a prescription. This Indian gentleman suggested that to get the best price for my Sofosbuvir I should Google the Chennai distributors of Cipla , Natco , Mylan , Zydus and Cadila and then call them and tell them my situation and then ask for prices. Good advice, which I will follow up on Monday.
Another email received regarding prices:
….. Chennai is bit more expensive than other Indian cities.
You will see- the printed price on the bottle will be 19900 INR (apprx 330 USD) a bottle. the lowest you can go is 12000 INR (apprx 193 USD) a bottle. If you cannot get that low the highest you would pay is 16000 INR a bottle (apprx 250 USD) a bottle. This is because the MRP printed is inclusive of all profits for stockiest, distributor and retailer. You will be buying from the company guys so that’s why you will pay cheaper. Have a good evening.
That was really helpful and the first time I have been given a clear explanation of why there is such a wide range of prices mentioned in the various forums etc I have read.
Of course I have to test all this out on Monday. I really do hope it’s all correct and that I will have a three months supply of some form of Sofosbuvir in my hot little hands by Monday evening.
17th May… 4 a.m.
The body clock is still on Oz time. I woke up this morning thinking about my auto driver (auto-rickshaw) who pretty much sums up how things work in India when money is involved. I need to remind myself about it.
So on my first day here I went out looking for a barber who the hotel told me was up the road a bit. On the way a fellow leaning against his yellow rickshaw asked if I wanted to be driven somewhere. I said no, that I was going to a barber for a shave, he wobbled his head and smiled and that was it. I walked on but could not see the barber. A few minutes later the rickshaw man drove past, pulled over and pointed back to where I had come from and told me that I had walked past the barber and pointed out where it was. He smiled, wobbled his head and told me I walked too fast and drove off.
So I found the barber, had the best shave and beard trim I have ever had and went back to the hotel. Over that day I hired two auto rickshaws and was not very happy with either driver. In the late afternoon I saw the fellow who had directed me to the barber. I had a chat with him and asked him if I could hire him for the whole day tomorrow and how much it would cost?
He thought about it and replied 700 rupees ($15). I thought that was too little an amount and said 1000 rupees for the whole day. He smiled, wobbled his head and agreed and we met the next morning at 10 a.m.
Getting to Fort St George
Raj was a good choice. His spoken English was a bit difficult for me to understand but he understood everything that I said if I did not speak too fast; and he (eventually) took me to all the places I needed to go.
Then at the end of the day we got back to the hotel and I handed him a 1000 rupee note.
A downcast look swept across his face, ” Oh no sir, Oh no this is not enough. I have given you the whole day, not working for other people. I have driven you to the Fort Saint George and the hospital and many places. Many hours. This is not enough.”
“But yesterday we agreed on 1,000.”
“Yes sir but it is such a long day, the traffic was bad… etc etc.”
It is a classic driver’s ploy, it happens 90% of the time They agree to take you for a cheap price and then at the end the price doubles or triples and they haggle and weep and plead and get angry until you pay more and then smile, wobble the head and say thank you very much when you pay up. It’s the game!
I had thought to avoid all that by offering more at the start and, if Raj turned out to be good at his job, I would hire him for the week and give him a good bonus at the end. But no we still had to do the dance.
So I paid him the 1,500 and he was happy but (unknowingly) lost his big bonus.
Now the reason I have rambled on with this story is to show something that pervades India, not all of India and certainly not everyone but it is pervasive. In India nothing is set in stone. Agreements, prices, knowledge, locations even.
“Do you know how to get to Fort St George?” I asked Raj.
“Oh yes sir, no problem.”
But really Raj has no idea where or what Fort St George is… He stops at various points and asks people but we end up at a museum somewhere that has nothing to do with Fort St George. So I go and ask for directions to get to Fort St George from a museum attendant then call Raj over to get the directions in Tamil from the museum man.
It takes a while but eventually we do get to Fort St George, it just takes time and patience, lots of patience.
With the distributor whose email is not working it will be the same. I will get to him eventually and I will get the Sofosbuvir. It will take some time and some patience: but I will get there.
I received this email this morning and it made me realise how lucky I am that my Hep C stayed dormant until now when there are very effective drugs available (even though we have to fly to India to get them).
Stay safe out there Greg, really good reading your story. I have had hep C for 13 years diagnosed and 30 years before that. Did 4 courses of old treatment. Had a Transplant had to have loads of other ops because of the HepC 8-9 Hernias, really bad back op and now a week ago I’ve started Harvoni and Peg treatment, I come from the UK and you’re right: Why do they wait till you’re nearly dead till they treat you, seems bloody crazy! My new liver is screwed, very cirrhotic… asked my nurse what I scored from 1 to 10 (1 is good 10 is bad) she said at least a 7.
Have a good day mate contact me if you want to.
Had a long email from the very helpful S in Delhi. He passed on a phone number for the distributor for Cilia, another one of the Indian pharmaceutical companies who have a licence agreement with GILEAD. S explained again to me, in greater detail, how different the distribution of pharmaceuticals is in India. He explained that the Indian pharmacies rarely carry stock of the very expensive drugs such as Sofosbuvir and that it is common for the Companies to have a local distributor who one can buy direct from. This explains all my confusion and slightly paranoid fears.
Apart from that nothing significant to report. It was so bloody hot today I had to retreat to the air conditioned safety of the hotel or risk drowning in my own sweat!
Tomorrow is D Day. I will phone the Mylan distributor and the Cilia distributor and, hopefully, at the end of the day I will have my Sofosbuvir in my room.
18th May 5 a.m.
So my strategy today will be to phone the Cipla Distributor first and set up a meeting. I am thinking that he will know a doctor or doctors who are familiar with Hepatitis C and prescribing Sofosburvir. Now, because I already have my script I will focus on getting contact details and other information to post for people who want to come here themselves.
Assuming the Cipla guy gives me the names of one or two Doctors I will go and see at least one and speak to him (or her) about putting contact details up. What the cost would be for an appointment/consultation and writing the prescription.
Also I will need to know what kind of information people would be required to bring to meet the doctor’s diagnosis requirements; because we will not want to have to go through scans and pathology etc.here.
Then I will go through the same process with the Mylan guy. I want to have a list of at least a few doctors’ contact details by the end of the day, as well as costs.
And, of course, I want to have my tablets!
(And I hope, hope, and hope today!)
Spoke to the Mylan and Cipla distributors this morning…. Ouch: communicating on the phone is very difficult. Of course it is not their fault. They can speak English but I cannot speak Hindi. Still it is frustrating.
I want to meet them face to face but they do not understand my Australian accented English and I do not understand their Hindi/Tamil accented English… and the phone connections are not particularly clear. Sigh.
Okay D. Day is D Done.
Here is how it works.
There are several options.
Buy Gilead branded Sovaldi, this is the most expensive option but a lot of people will feel some comfort in using the branded product. Sovaldi is the brand that Gilead sell in the US and various other first world countries.
Sovaldi will cost 19,800rps per bottle of 28 tablets.
Branded Heplovir (Ribavirin) @ 230rps per bottle.
However I am informed that there may be issues in some countries about bringing in the branded Sovaldi. I get the impression that GILEAD are not too keen on people taking Sovaldi out of India, particularly into the first world countries.
To purchase Sovaldi in India you will need an Indian doctor to prescribe it for you. You should bring along all relevant recent reports related to your Hep C. With the photocopy of your prescription you will also need to supply a photocopy of your passport and one other form of ID.
To purchase a generic brand such as Myhep you do not need a prescription to buy it here however that may change. But anyway, in most cases, you will need a prescription to bring it into your country of origin. You need to find out your country’s laws but that is the case in Australia.
The cost of Myhep, which is exactly the same chemistry as Sovaldi, is 15,000rps per bottle of 28. In the case of Myhep they also throw in for free a generic Ribavirin.
So if you are doing a three month course the difference is a bit under 20,000rps (AUS$400).
Regarding doctors for the “bringing it home” prescription:
Any doctor in India can prescribe Sofobuvir generics so you don’t need to go down the path I followed by seeing a specialist and forking out quite a bit more money. Seeing a normal doctor for a single consult should not cost you more than $10, but I would still bring a few test results along. Let’s face it we’ve all seen all the specialists and done all the scans and tests and stuff. We just need the medication.
Bringing test results along might become more important as there are whispers about people coming over here and buying bulk Sofosbuvir generics and smuggling them home to sell for a profit. I guess so many people watched the Dallas Buyers’ Club it had to happen.
Anyway there is some chat about people having to prove that they actually have Hep C before they can get a prescription. It is not the case now but that could change, so bring some paperwork.
Anyway I do not have my medication yet! There were mix ups in telephone communications, my accent versus their accent and it ended up that I did not have a face to face until late this afternoon. But it is now all clear and the order is placed. I have been told to expect delivery either later this afternoon or in the morning tomorrow.
At this stage I am going to go with the Sovaldi purely because that is what is written on my prescription and I do not want any hassles at Customs. If there is any issues about me taking a three month supply of Sovaldi out of the country then I will switch to Myhep and get another prescription.
I will let you know how it unfolds.
p.s. It’s now 8.30 p.m. and I have not got the meds. Tomorrow then.
9 p.m. A Summary
Can’t sleep so I’m doing this final summary of costs.
Air fare to India $1,200
Hotel (6 nights @ $50 per night) $300
Visa (on-line) $60
Food and transport etc $300
Travel Insurance $140
So the total cost will work out at pretty close to $3,000.
I chose a mid-range hotel in T. Nagar, fairly central to most of Chennai. This hotel offered everything I wanted. Comfortable room, comfortable bed, good air con, clean, friendly helpful staff, good wifi etc. at AUS$50 per night.
Chennai does not offer a lot of options in accommodation and accommodation is relatively expensive compared to most Indian cities. It’s not a major tourist destination and in the entire time I have been here I have not seen one other white person, which is a rare thing now days.
This time of year is very hot. The last two days have been over 40C and its pretty hard to do stuff after mid day. Of course this time of year is hot everywhere in India and I was not prepared to wait around for autumn.
India has introduced a new Point of Entry on-line tourist visa system that is really good. You do the whole thing on-line and will have approval back in a few days. Make sure you print out the approval email to show at immigration. Medical Tourist is one of the options available on the Indian Visa form.
19th of May 9.30 a.m.
Sorry to say that I am still waiting. I have had breakfast and gone through my emails, read the newspaper and sent my driver off to do his normal customer picking up things because I do not think I will need him until after 11 this morning. Most businesses here do not start until about 10 a.m. I guess it gives folk time to enjoy the cooler part of the day. It will be above 40C again today.
So I do not expect to get delivery of my medication until around 11 this morning.
I’ve had a few emails from folk who are worried that by me publishing what I am doing in India that I may be attracting the attention of GILEAD who might not want concise information about how to go about getting the MUCH cheaper sofosbuvir in India made readily available.
And I admit to having had similar thoughts from the first day that I began to publish this diary. We all know how much big multi-nationals love their profits and we have all heard stories about the lengths to which they will go to either increase or preserve those profits. The 2005 film The Constant Gardener is based on a true story on exactly that theme. In The Constant Gardener Big Pharma actually murders people who threaten its profit base in Africa. Haha… I’m certainly not saying that would be on the cards for me but I do wonder about what strings might be pulled, either in India or Australia, to make things difficult for me.
Anyway, in response to the concerns of folk who have written to me about this issue, I just say that I am aware of that risk and proceed forward anyway. I hope that this diary, combined with the work of lots of other good people around the world, will add to the pressure on GILEAD to make its products more accessible, more affordable, to the people who suffer from this terrible and debilitating disease.
I do not have a problem with pharmaceutical companies making good profits, rewarding their investors and being rewarded for their research work, however the profit does not need to be an obscene profit and it does not have to be at the expense of tens of millions of people whose suffering could be relieved by fair prices. Please do make a profit… a good profit and continue the amazing research and development you are doing… but be fair, please be fair.
Remember Dr. Alexander Fleming, who invented penicillin, by far the most important drug every made. Flemming did NOT apply for a patent so that his momentous discovery would be freely available to everyone on Earth.
Perhaps the folk who run Big Pharma could learn from that? Nearly 100 years after its invention Companies still make a profit manufacturing penicillin but there is no monopoly on it so prices are fair.
Yep… still waiting !
Oh yes… still waiting. Two phone calls later.
Well I am starting to hear the tick tock of the clock on the wall much louder now! Time is running out. Less than 48 hours to get my prescription filled or I fly home with a problem.
Here is what has happened:
As I mentioned the Mylan guy told me to expect delivery before or by 11 a.m. this morning at the latest. After 11 a.m. I phoned him and asked what time I might expect the tablets to arrive. He told me by 12 noon. At about 12.20, after waiting two hours in the hotel lobby I was about to phone him from the reception desk when the phone rang and it was a different guy from Mylan saying he was on his way with the tablets. Fifteen minutes later he arrives with one bottle (28 tablets) of Sovaldi and the month’s course of Ribavirin!!!
I was slightly agitated when I realised what he had brought but one third of my prescribed dose, but I did my best to conceal my agitation… though my quavering voice, clenched fists and shaking hands might have given it away.
Still I had no interest in shooting the messenger. He was just the delivery guy and it would be stupid to get angry. This is India, things rarely run smoothly.
I explained to him that a one month supply was of no use to me. A head wobble and a smile and the gentleman explained to me that Gilead would not allow Mylan, or anyone else, sell more than one bottle to a particular person at one time because they do not want foreigners taking the Sovaldi back to their home country. So very sorry sir but there is nothing I can do about it.
Of course I had gone through all this with the other fellow yesterday afternoon and explained that If I could not get the three bottles of Sovaldi then I would take the Myhep instead,
How much is lost in translation? How much is lost in paperwork, procedures, poor lines of communication? I don’t know but it is frustrating in the extreme.
The gentleman who delivered the one month supply tells me that he has sent an SMS to the main man…. but has he???
I try to phone main man but his line is engaged (is it a call block or am I getting truly paranoid?). The delivery guy says he must be in a meeting and can not answer his phone; but I don’t know. So I send him an email. No reply. So I ring again. Engaged.
So it is now 3.15 and I live in hope that I can speak to this guy and arrange something before I fly out in two days time!
I knew this trip was never going to be easy but the dance steps are more complex than I had expected.
Anyway I paid for the one month supply of Sovaldi, thinking that I will just now get the two months of Myhep. This was on the assumption that I could actually speak to the Mylan guy and place the order.
I will post again this evening. Hopefully with good news.
Okay… spoke to the Mylan guy and went through everything again, as best one can on the telephone when both parties have strong accents. Telephones are very helpful in certain ways but when we are talking to each and we both have strong accents… over the telephone understandings can be difficult. So when it came down to critical points I asked the hotel manager to take the phone and make certain we were both talking about the same thing and everything was clear.
Me: I would not leave the hotel this evening. I will stay here until the Myhep was delivered.
He: The Myhep would definitely be delivered tonight, before 7 p.m.
So I wait.
I am tempted to write “mission accomplished” but the ghost of George Bush on the aircraft carrier suggests not to use that phrase.
Instead I will write GOT ‘EM !!!!!! My main man came through!
It was not quite six o’clock when the delivery guy appeared at the front desk of the hotel; I had just gone into the restaurant for a nice bowl of curry when the desk manager came and got me from my meal and told me there was someone to see me. A young fellow with the package I had flown so far to get. I had to run up to my room to get the cash. I ran fast up the stairs and faster down them. We counted out the 30,000 rupees and it was all done. I vigorously shook the delivery guy’s man, and thanked him profusely. I’m sure he thought I was quite insane.
Then up to my room to look at my three little jars of tablets that I had travelled so far to get.
It seemed totally absurd. Three little plastic jars, each with 28 little tablets in them. I had travelled half way around the world, spent nearly a week jumping through seemingly endless burning hoops, all for these three little jars. Ninety thousand dollars worth in Oz. It just seemed too absurd. These little jars held the difference between health and sickness, life and death, years of good life or years of suffering. It was like some kind of weird magic, some kind of genie in a bottle.
I feel both blessed and guilty; guilty because there are so many other people in the world who should have these little bottles, millions and million of people who are now suffering terribly because they cannot get what these three little bottles contain. It is cruel, it is insane. How can any human withhold that which will ease another’s suffering?
I am overwhelmed by the enormity of this experience and cannot write anymore. I will post again later. Bye.
20th May 4 a.m.
Woke up an hour ago with a terrible nightmare and could not get back to sleep. I guess I am starting to worry about the trip home.
I am getting a lot of emails from folk with Hep C sharing their stories with me and their terrible frustration at not being able to access the medication that might cure them.
Some people have gone through two or three Inferferon based treatments and still had the Hepatitis at the end of the treatment as well as suffering the debilitating side effects. Mothers who have Hep C and so desperately do not want to leave their children orphaned. So many sad stories… and all of these people saying “The medicine is out there but I cannot afford to pay the $90,000 to get it.”
They are hoping that this trip of mine is successful and that the India option will be viable. I hope so too.
A few people are asking the question:
“How do you know you have not purchased fake tablets?”
The answer is that I do not know, and will not know until I get home and start taking them and get the results of the blood tests.
India has a good reputation for manufacturing pharmaceuticals and there are now at least five manufacturers licensed by GILEAD and I seem to be buying from them and I did get a prescription from a highly reputable doctor and I am buying from the company that he recommended.
The tricky thing with India is that things are done very differently here. It is not simply a case of taking your script down to the local pharmacy, handing it over the counter, waiting ten minutes and walking out.
It’s a different system, not a worse system or less reliable system, just different, and, like learning a new language, at first it is difficult but once understood and mastered it’s not a problem.
Well I think that nightmare is out of my system now, so I will have another crack at some sleep before the sun comes up.
Went back to sleep and dreamed that my cat had died…. What is that about?
Anyway the day has gone pretty smoothly. All the pressure is off and I’m backing my bags and getting ready to leave, relieved.
Just did odd jobs today, went to Madras University and donated one of my books to their library and also the History Department, also gave one to each of Chennai’s two big public libraries.
For those reading this who do not know me I recently converted my Master’s thesis into an ‘easy reading’ history book. A lot of the research was focused on Madras 1790 to 1820, which is the main reason I chose to come to Chennai rather than any of the other major cities of India.
So, hopefully I will have nothing to report until tomorrow. I am still a bit anxious about getting out of India but I think that it just paranoia.
21st May 2015
It has been a very weird 24 hours and I am relieved to be at the new (and already starting to rust) Chennai International Airport waiting to board Malaysian Airlines flight 183 for home.
The story begins yesterday (Wednesday) afternoon, when I attempted to log on to my diary to make an entry. I discovered that I could not access my website. Indeed I could not access any of the several websites that I manage; the passwords had been changed!
Now I should clarify that I have been building and maintaining websites for nearly fifteen years. So it’s not like this blog is the first time I have logged onto a website; and in that fifteen years I have never been locked out of my websites by a password change. Yep I had been hacked.
It took me about four hours of working with my web hosting service to get things right. On my end I had to totally uninstall and remove all software associated with my websites then re-install it all. On their end they enabled me to reset my passwords and usernames. Eventually I regained access to this diary and my other websites.
As I have mentioned a few times I have been receiving and answering a lot of emails from folk with questions about this process I am going through. I guess one of those emails had some sort of Trojan (or whatever they are called).
Anyway it’s all fine now and I will scan all my emails before opening them in future.
At KL Airport
So, as I said, I am now heading home. I think that my visit to India has been a success and when I get home I will go and see my GP and, under his supervision, or some other doctor’s supervision, I will start taking the Myhep (generic Sofosbuvir, manufactured by Mylan under licence from GILEAD).
I did consider starting to take it here in India, as I did have the prescription and dosage from the specialist but a couple of people said that there were possibilities of a reaction to either the Sofosbuvir or the Ribavirin and that it would be wiser to start at home rather than have something bad happen at 10,000 meters above Indonesia.
Buying Prescription Medications in India.
At the end of my last day here (yesterday) I decided I was still not really clear enough about how the sales and distribution process works in India so I got my driver to take me to the warehouse of the wholesaler who had delivered the Sovaldi to me the previous day (remember I got one bottle of Sovaldi and two of Myhep). I had a receipt for the cash payment I had made and their address was on it… and it was not too far from my hotel.
So I asked my auto driver if he knew the address and of course he wobbled his head, smiled and said “Oh yes sir, I know it.” But of course he didn’t.
Anyway, eventually, after driving around in circles for a while, we found the address and I walked up the stairs to the warehouse.
I was not sure what type of response I would get just walking in like that but the manager came out and, fortunately, was very polite (as most Indians are) and, bonus, he spoke English very well.
I explained to him that I was trying to understand how sales and distribution worked in India for pharmaceuticals and that talking on the phone was not easy for me. He smiled and then gave a very clear explanation. Drawing a distinction between common ‘off the shelf’ medications and the expensive stuff like Sofosbuvir. He explained that the normal pharmacies could not afford to hold stocks of these expensive medicines so:
1. The customer contacts the distributor and supplies documentation like copy of passport, prescription etc. then places his order.
2. The distributor then contacts head office (where ever that might be, in this case it was in a city more than a thousand kilometres away) and sends them copies of the documents.
3. The head office issues a deliver note to the wholesale warehouse.
4. The warehouse contacts the distributor who then contacts the customer to arrange a delivery time.
5. A person from the warehouse arrives at the customer’s location with the goods and an invoice/receipt.
6. On receiving and checking the goods the customer pays, in cash, the delivery man for the goods and is given a stamped receipt.
Back Home !!! No drama at any point. Start taking meds tomorrow.
Buying generic Sofosbuvir in India: some thoughts.
In a couple of the Hep C forums some people push the idea of scams and fake Sofosbuvir pretty hard and seem intent on scaring people away from the idea of going to India to get their medication.
I am not sure why that is, particularly when one considers the alternatives.
The reality is that there are seven, reputable, long established companies licensed by GILEAD to make Sofosbuvir in India. These are not little backyard chemistry labs, these are huge, well established pharmaceutical companies who have been manufacturing medical drugs for many years and supply local and international markets.
To buy Sofosbuvir that is EXACTLY the same Sofosbuvir as is sold by GILEAD in the USA and Europe all you have to do is contact one of these seven companies’ distributors and organise to buy it. There is such a small chance of these people selling you fake Sofosbuvir that it is not even worth mentioning. But if you want to feel safe you can either buy the Sovaldi, manufactured by Mylan, or the Myhep manufactured by Mylan, the same product except the tablet is a different colour.
The difficulty is navigating the different way things are done in India. Just because something is different does not make it wrong. And just because you are in India it does not mean that everyone is going to rip you off. There are no more criminals per head of population in India than in the USA or the UK, probably less.
I hope that I have given enough information in this little story to explain how to go to India and purchase, legal, licensed Sofosbuvir.
The cost of buying a full three month course of Sofosbuvir and Ribavirin is less than AUS$1,000 plus, as I have already said, the whole trip cost me less than AUS$2,000.
Right now I am very, very glad I spent that three grand and that I can start killing this damn virus tomorrow and I am glad that I live in a country where it is possible to raise the three grand without selling my house.
I am very, very glad I am not on a waiting list at some hospital and going in for tests every three months to see if I am sick enough to get treatment.
I am very very glad that I did not choose to do the Infereron based treatment when it was offered to me last year.
I am very glad that I was lucky enough to find out that I had Hep C at the same time this new family of drugs became available.
I am very glad that the Indian government did not grant GILEAD a patent.
And I am very glad that our government allows us to bring prescribed drugs into Australia from other countries.
I guess my next story line will be about how the treatment goes
My Hep C Treatment
Saturday: 24th May 2015
A little jet lagged today; after a week in Chennai my body had just got used to India time and climate only to be thrown back into Tasmania time and climate. From days of temperatures of around 40c to days where the temperature does not exceed 14c.
I phoned the doctor’s clinic this morning and made an appointment for 10 on Monday morning but decided to start to take the tablets today. One Myhep (Sofosbuvir) and six Ribavirin (three twice daily).
There is a very comprehensive data sheet included with the Sofosbuvir and it has a lot of information about possible side effects and various other stuff. Specifically it says that Sofosbuvir can be taken with food or not with food, so I take the tablet with my breakfast.
It is a large reddish brown tablet (Sovaldi is white) and as I tip the tablet from the jar into the palm of my hand I marvel again that this little jar of tablets would cost me $30,000 if I could have afforded to purchase it in Australia. So I swallow the $1,000 pill and eat breakfast.
I decided to start with the generic Myhep and save the Sovaldi until the second month just to see how the results with viral load go just with the generic brand.
Sunday 24th May
Wow… I’ve taken two Myhep tablets and 12 Ribavirin tablets now and I am amazed! For the first time in ten months my urine ceased to be dark and has returned to normal colour, the bad smell is also gone. No side effects at all.
Doctor’s appointment tomorrow. Will organise viral load test.
Went to see the doctor yesterday. He was very pleased to see that the trip to India had succeeded. I showed him the little jar of tablets and we marvelled together that this little jar of tablets was worth $30,000.
Then a shadow passed across the doctor’s face as he shook his head “How can this little jar of tablets be worth so much money? Only because it holds the power of life and death. What kind of heart is in the man who makes the price so high that many will die because they cannot afford the medication?”
Of course he was recalling again his experience in Africa where he saw thousands die for exactly that reason.
We again discussed the fact that the drug companies need to make profits for their investors: but how much profit and at what expense!
Anyway I have done that rave before so I will not go on with it again.
My doctor then wrote me a form so I could get a viral load test and also the liver enzyme test. I think I will take the test next week.
I also sent a text message to the nurse at the Hepatitis clinic to let her know I was back. Ha! I am not much on texting but I used my wife’s iphone. My fingers are too big and I kept getting beaten by the auto speller and accidentally pressing the send button instead of the delete button!!! It was a really garbled series of messages.
Anyway she phoned me back later in the day and I am think she thought I had gone mad. Once I had established my sanity we discussed what had happened and I ran through exactly what medication I had and the doses etc that the doctor in India had prescribed. She was happy with all of that and said everything was exactly right.
Then she sighed and said wistfully… “I wish I had some jars of that medication in my clinic.”
She is a very caring person and, of course, she was thinking of all the people who would benefit from having this medication but who could not access it through the health system and could not afford to buy it (in Australia).
Well this is my fourth day on the Sofosbuvir and still no side effects other than I am not getting nose bleeds anymore and my urine has gone back to its normal colour. Looking forward to seeing my viral load and enzyme levels next week.
I am getting a lot of emails from folk who are interested in doing the India trip to get their medication. If you are thinking about doing this I am currently trying to put together a little package of information that I can send people.
I am not comfortable putting the contact details of people in the supply chain up on this website. I am trying to get a response from the Mylan distributor about me giving people his contact details but mostly people in India seem to prefer using the phone rather than email.
What I think might be the best thing is if I can convince one of the people who helped me in India to become a “facilitator”. That is he would have all the contacts with the different people in the chain of supply from the doctor to write the prescription to the distributor and warehouse.
I have two people in mind, both who have had Hep C but I must discuss this in some detail with them. I believe that if one of these gentlemen should offer to take on this role then he should be paid for his time and energy. I would certainly have happily paid someone to help me get through the process I went through and eliminate some of the stress.
I want to make clear that I do not want, and do not seek, any financial gain from doing this. My motives are purely to help people with Hep C deal with this weird situation created by the price difference between western countries and India for Sofosbuvir. That said the person on the ground in India should be paid to help folk organise their medication and ensure that there are no problems and everyone is dealing with reputable people.
Anyway I am trying to organise this now. It will probably take a few more days to get the details sorted out.
Best wishes to you all.
My sleep has been getting worse, I hardly slept at all last night. At first I assumed that this was jet lag but I should be over that by now. As I was lying there awake in the night I realised that insomnia was one of the listed side effects. So… I can report that one side effect of Sofosbuvir is insomnia, which is noted in the list of possible side effects of Sofosbuvir. On the scale of all possible side effects, well, it’s not too bad.
Fear of Fake Medication
A reoccurring subject in correspondence I am receiving is: “But what if the tablets you buy are fake?”
It is a valid question and one that I thought about myself however I applied the logic of ‘Pascal’s Wager’ to this question. Pascal was a 17th century French philosopher and his wager was basically: If there are two choices and No. 1. has no chance of a positive outcome and No. 2. has an 90% chance of a positive outcome then always choose No. 2.
So for me the two choices were: 1. Stay at home knowing for certain that I would not be able to get Sofosbuvir until I was very ill or 2. Go to India where there was a very small chance that I might buy fake Sofosbuvir.
For me it was an easy decision. And I should say again that if you go to a reputable doctor and buy from one of the pharmaceutical companies licensed by GILEAD, then there seems to me that there is very little risk of being scammed. There is no benefit for a large, licensed, pharmaceutical company to risk its status as a licensed manufacturer and supplier by supplying fake meds when the real meds cost them almost nothing anyway.
I would also add that the people who benefit most from this kind of scare mongering, and that is what it is, are the big multi-national drug companies. I would even go so far as to entertain the thought that professional public relations people might be employed by big Pharma to specifically create that kind of fear, which is very pervasive in some social media forums.
30th May 2015
After a few nights I seem to be managing the insomnia better. It’s a strange state, the body never quite falls asleep and the thoughts keep ticking over. I’m doing yoga every night immediately before going to bed and when I am laying there, awake, I treat it as a kind of meditation and try to keep my attention away from my thoughts. It’s not a proper sleep but I get out of bed in the morning reasonably refreshed. That combines with the removal of the usual Hep C fatigue issue, an apparent effect that a week on the medication has already had. I’m just not feeling any fatigue anymore and looking forward to getting my viral load tests.
Going to India?
It seems that I will not be able to organise anyone as a facilitator in Delhi for folk going to India to get Sofosbuvir. So I can only give you contact details for Chennai. I have contacted the Mylan distributor and he is fine with me passing on his contact details. Please only contact him once you are in India and only to arrange to buy the medication. If he gets bombarded by general questions about obscure things then he will not be happy. If you have general questions please direct them to me by email.
So I have made up an information sheet that has all the contact details for all the people dealt with and places that I went. I think it is all that is needed to get Sofosbuvir in Chennai. If you email me I will send the info to you.
Monday 1st June 2015
Well not that much to report. The few side effects I have had are minor. A bit of insomnia (It’s 11 p.m. now and I just got out of bed because I could not sleep so I’m writing this). A bit of a loss of appetite, nothing significant but it is noticeable. No headaches or nausea. On the positive side nose bleeds have totally stopped. Also: I cut myself in the garden (accidentally) and the bleeding stopped like it used to before I had Hep C.
But, of course, I lay in bed and worry “What if I have brought home fake meds?” It’s always at the back of my mind. So I have the paperwork from the doctor to get my viral load and enzyme level blood tests. He suggested waiting one month before I get the tests done but I am thinking I might get them done tomorrow just to get some indication of what is happening. If the viral load and enzymes are both way down then I can stop getting stressed about the fake medication thing.
I think the viral load test takes a few days to get the results so I guess I should have them by Friday. I will post them as soon as I get them.
Also I have been asked a lot about whether I have any trust worthy contacts for mail order Sofosbuvir out of India. At this point I do not but I am trying to source someone with a proven trust record. If I find someone I will certainly let you know.
Tuesday 2nd June 2015
Mail Order Sofosbuvir
Here is the link to an interesting article on generic Sofosbuvir published today in a US newspaper, Bloomberg Business News. Of particular interest is the last section of the article which examines the on-line availability of generic Sofosbuvir. Whilst I am sure that there are bona fide on-line resellers of these generic drugs I still have no confirmation of anyone buying them. But I will keep you posted.
Thursday 4th June
Well I did not think I would have much to write about until I received my blood test results but actually today I have a heap of news.
Reliable, Safe, Genuine, Not Fake Mail Order Generic Sofosbuvir
As I mentioned in my last post I have been trying to source an honest person, organisation, company or group that will reliably sell and send genuine generic Sofosbuvir from India to anywhere around the world.
I am very pleased to say that I have located and communicated with exactly this group.
In a nutshell they will supply either Myhep (Mylan) or Hepcvir (Cipla) at 18,000 rupees per jar of 28. That’s about $300 per jar.
This group is a not for profit organisation that originally started up to supply generic HIV drugs to people who could not access them from whatever country they were in. They require a doctor’s prescription for customs clearance purposes and they send by DHL, the cost of which is US$80. They can only send a maximum of three jars per shipment (3 month supply). Let me know if you want further details of these people.
The above post leads me to another subject I have been thinking about for a while. Today I read in our national newspaper how Russia’s government runs what are called “troll factories”. It is a term I had not heard before but it is a room full of people with the appropriate qualifications who are employed to spend their days pumping false information into social media sites and other internet information sharing sites.
You may recall that I mentioned earlier how I thought that there were a few, popular, social media sites connected with Hep C issues that seemed to be pushing the anti-India anti-generic issue very hard, subtly but hard. One person who contacted me suggested that these sites were actually being run by certain drug companies to create a climate of fear around the idea of buying generic anti-viral drugs.
I was a bit sceptical at the time but now the idea of a troll factory run by the big international drug companies does not seem too farfetched after reading about the Kremlin’s troll factories.
My Blood Tests
Well I went in an had the little vials of blood withdrawn, via a syringe, from my arm yesterday. The irony was not lost on me that the reverse process was how I got this damned disease forty years ago.
Anyway, the blood has been taken and is being shipped to Queensland where the viral load and enzyme tests will take place. Results will take about ten days, so at the end of next week I will see how the Indian pharmaceuticals are doing their job.
A Link For Folk In Australia
This link explains the import laws for therapeutic goods for personal use. It appears from this law that there is no problem for receiving up to a three month supply of generic Sofosbuvir by mail order from India. Anyway read the rules yourself by following this link. People from other countries should check their importation laws.
Friday 5th June 2015
Mail Order Sofosbuvir Breakthrough
Well there is a lot to report today so I think it is probably right publish something just on the subject of obtaining Sofosbuvir on-line ( by mail order and courier delivery). This is included at the end of the book in the Appendix section: titled Buying Sofosbuvir from India on-line.
Sunday 7th June
I feeling pretty well. Still a few minor side effects like a bit of a headache occasionally, a bit of insomnia, a few weird blotches under my skin. Nothing that causes any real problems. I have noticed that my typing is not as good as it was a few weeks ago. I’m not hitting the keys as smoothly and missing letters occasionally or typing words back the front… but again nothing dramatic.
I went and spoke with the nurse at the Hepatitis Clinic on Friday. She was pleased with my progress and that my GP was supervising the treatment. She reminded me that anaemia can be a problem with Ribavirin and that my next blood test should be a full blood test, specially looking for anaemia.
Harvoni and other new Hep C Drugs
As I have said before, until I found out I had Hep C I knew nothing about the disease. Once I learned that I had Hep C my research tended to focus on treatment options for my specific case, genotype 2. Luckily for me genotype 2 is the easiest Hepatitis genotype to treat and responds very well to the Sofosbuvir and Ribavirin combination.
One of the things that has happened since beginning this blog and communicating with people who have the various Hep C genotypes is that I have begun to study the various treatment options, particularly those published by EASL- The International Liver Congress of April 2015. The reports tabled at this conference represent the very latest research into Hep C and include all the recent breakthrough drugs. These reports make very interesting reading and discuss the various new drugs, like Harvoni, which have just come, or are about to come, onto the market.
This new generation of Hep C drugs offer great hope for all Hep C sufferers and I wonder what the drug companies’ marketing ploys will be???
I wonder if there are corporate CEOs who are interested in ending the suffering of sick people or are they all just interested in ripping the maximum profit out of the world’s health systems?
8th June 2015
Well it’s 1 a.m. and I’m having a dose of the old insomnia. I find the worst thing is to lay in bed and try and get to sleep when it just is not going to happen; so here I am up typing some of the things that were rolling around in my head as the clock struck midnight.
Buying Harvoni in India.
Because for a lot of folk Harvoni represents the best chance for a complete cure from Hepatitis C, particularly for genotype 1, I have been researching its likely availability in India.
My information, from several reliable sources in India, is that GILEAD has licensed Mylan to manufacture Harvoni in India and Mylan has applied for approval from the relevant Indian Authorities. I have been advised that this approval should be granted within the next six months. So some time before Christmas.
So it is very strange that a number of Indian online pharmacies and other suppliers are claiming that they can already supply Harvoni to customers. Because it has not yet been approved in India so how can they be selling it?
Once more a reminder to be very cautious when buying medicines over the Internet.
10th June 2015
Well here it is nearly one in the morning and after an hour or so of laying in bed waiting for sleep to come I am up typing again.
Yes insomnia is still really the only noticeable, annoying side effect from the Sofosbuvir/Ribavirin medication. I just read the list of 59 possible side effects from Ribavirin. They list insomnia along with irritability, but I’m normally an irritable old coot so that does not seem a problem. They also list Euphoria… hmm I wouldn’t mind that one; but no, I have not been euphoric much lately.
I have been getting hundreds of emails from people asking advice about going to India to get Sofosbuvir or how to get Sofosbuvir from India and I try to reply to everyone. I have made a couple of information sheets that summarise the process I went through going to Chennai to get the medication and also the mail order thing, which I send out to help people get a clear idea of the processes.
I am also still trying to find people who are willing to act as a facilitator for people who are not comfortable jumping through the hoops alone in India. So far there is one fellow in Hyderabad who looks like he might be interested in doing that.
Really it’s just a waiting thing now. Waiting for the first test results on the viral load and enzymes. Waiting for the last pill to be swallowed at the end of 84 days. Waiting for the post treatment blood tests. I cannot complain, the ball is rolling and there is light at the end of the tunnel.
I might go and try some yoga in front of the fire (its 4 degrees and raining outside).
Friday 12th June
It’s 1 a.m. in the morning again
Well the insomnia thing seems to happen every second night. I guess after one night with little sleep you get a good night’s sleep the next night because you are so tired? That’s how it seems to be with me.
This afternoon I will get my blood results. I know quite a few people are waiting to hear about that to see if the medication I brought home was fake or not.
The Fake Medication Issue.
I have been over this generic versus fake meds issue before but I am seeing a different angle to it now, as a reason that doctors are refusing to write prescriptions for people with Hep C so they can bring the medication into their country.
As mentioned before I get a lot of emails from people around the world seeking information about how to get generic Sofosbuvir from India. Some wish to go there themselves, as I did, buy it and bring it home. That is quite an affordable option if you live in Europe or in some other country close to India. However a lot of people are either too sick to travel or they can not afford the combined cost of travel and the medication. For these people importing the Sofosbuvir and Ribavirin treatment is the only option.
Many countries are like Australia in that they will allow their citizens to import medication for their own use if they have a prescription from a doctor in their own country. What I am hearing from a lot of people who want to go down the personal importation path is that they are having a real problem finding a doctor to write a prescription. The doctors are saying that they cannot be sure about the quality of the drug because it is made in India however they may not realise that 40% of all prescription drugs consumed in the USA originate in India(USA FDA figures in the Wall Street Journal 14th May 2014).
Indian pharmaceutical manufacturers have over 500 manufacturing factories registered and approved by the FDA and these are regularly inspected by the FDA. Many Indian drug companies are actually manufacturing arms of US or European companies.
For example Mylan, who manufacture Sovaldi and the generic version Myhep, was founded in the USA in 1961 specifically to manufacture generic drugs. Its Indian branch manufactures for the US and European markets as well as India and Asia. It is FDA approved and Gilead licensed.
Cipla who manufacture Hepcvir under licence from Gilead also manufacture in an FDA approved factory.
So we have this situation where Sofosbuvir is being manufactured under licence from Gilead in factories inspected and approved by the US FDA and yet doctors are saying:
“Oh no we can not prescribe generic Sofosbuvir out of India because we can not trust the quality.”
When the reality is that around the world up to half of the drugs that doctors prescribe every day are probably manufactured in India.
So what is really going on here?
We have a situation where millions of people are suffering and dying from a disease for which there is a cheap and effective cure but their doctors are not prepared to write a prescription for the medication that will cure them because the medication comes from a country that manufactures about 40% of the world’s prescription medicines.
No wonder I cannot get to sleep!
8 pm 12th June
I went to get my liver enzyme and viral load results today. First the bad news. There was a letter from Pathology saying that they had not done my viral load because the request had not been written by a specialist. Oh well if I had known that I would have gone to the specialist! Anyway I will organise that next week.
Now the GOOD NEWS!!!
My liver enzyme results were better than I had hoped (warning: only people with an ailing liver will get excited by these figures).
These tests were taken on the 3rd June 2015, 11 days into my treatment using Indian generic Sofosbuvir (Myhep) with generic Ribavirin. The results are compared with a test from 4th of May 2015 a week before I left for India.
ALP……………down from 98 to 68
Gamma GT….down from 222 to 109
ALT……………down from 464 to 32
All other enzymes in normal ranges. So for those of you who are worried about the Indian generic Sofosbuvir give up the fear and grab hold of hope!
After posting the above test results quite a few folk emailed me about them. These included a doctor from the USA who has been following this blog. He spoke to me about my liver enzyme level test results.
“Hi Greg, I had never read your whole history of Hep C. Now I can see why you wanted to get treated ASAP. With liver functions like that GGT and ALT your liver was actually getting destroyed by the virus. I cannot believe that you were not given first priority. I’m sure your virus load will now be very low. Good News!”
Actually things were a lot worse when I first got diagnosed so to put the above test results in context below are four test results from 4th September 2014, 23rd March 2015, 4th May 2015 and 3rd June 2015
ALP: 125 then 85 then 98 then 68
Gamma GT: 692 then 227 then 222 then 109
ALT: 760 then 240 then 464 then 32
The big drop between Sept 2014 and March 2015 was brought about by dietary and life style changes but as you see by May 2015 the virus was fighting back and gaining ground again and I would guess that if I had not got the Indian generics and started the Sofosbuvir treatment my liver would now be on the rapid downward spiral to oblivion, cirrhosis and beyond.
So don’t wait around for doctors, bureaucrats and health department functionaries to decided your fate, take personal control of your health and start treatment now, it is not difficult and not expensive. You can either fly to India and get the medication yourself or you can have it couriered to your door. It depends on the Customs laws in your country. Some people might need to go to India and do the treatment there. You can live comfortably in India for less than $200 per week.
If you have genuine financial difficulties and can not afford the current cost of around US$1,100 for getting the generic Sofosbuvir shipped to you, talk to me and I will do what I can to help you.
19th of June
Well I’ve been exactly one month on the medication so I went and had half a dozen vials of blood taken out of my arm for the full blood tests, including viral loads. There were so many vials that on the last one the needle slipped out of my vein and my dangerous blood oozed out all over the place. End of next week for the results.
Side effects are pretty minor. Still a bit of insomnia but not too bad, it helps if I am really tired when I go to bed. Also if I have done some hard physical work so that I am physically as well as mentally tired.
Yes I make more mistakes when I am typing and, more often than normal, my memory has a spasm.
Oh and I am not getting irritable, it’s just that other people are getting more annoying.
So all in all the side effects are pretty much nothing compared to the stories I have heard about the Interferon based treatments.
Fear Mongers and Fear Mongering.
Because of this blog and other stuff that has happened I have become quite involved in a few Hep C forums and have noticed that there is a lot of fear floating around about the idea of buying the Sofosbuvir and Ribavirin treatment from India. First there is the fear of being ripped off by an unscrupulous online supplier. Second there is the fear of breaking some law by importing the Sofosbuvir and Ribavirin into one’s home country.
I have already dealt with the issue of buying Sofosbuvir from India and, apart from the people I have recommended there are no doubt other honest online pharmaceutical suppliers in India.
Bringing Sofosbuvir into your country for personal use.
Bringing Sofosbuvir into Australia for personal use.
The Australian government’s position on this is very clear and very accessible. You can acquire Sofosbuvir (and we hope soon generic Harvoni) from either a friend or supplier in India. There is no problem with this. Please read the section of the relevant Act. It’s easy reading and very clear.
Importing Sofosbuvir for personal use into the UK or the USA.
Like much of the discussion around Sofosbuvir, Sovaldi and the new generation Hep C drugs the discussion about the legality of importing these life saving drugs into one’s own country for personal use, is full of fear mongering and false or erroneous information. Particularly in the case of the UK and the USA where the relevant legislation is much harder to locate. However thanks to friends and much Google searching I have pulled a couple of bits of information that will be very useful to people living in the UK and USA.
Firstly bringing Sofosbuvir into the USA for personal use.
For the information of people living in the USA, this is to counter the fear mongering going around about bringing Sofosbuvir into the USA for personal use. Check out the link yourself but these are my thoughts.
The correct interpretation of this bulletin by the FDA is important. This first paragraph (below), by the FDA, summarises the FDA’s position:
“FDA has a policy explaining that it typically does not object to personal imports of drugs that FDA has not approved under certain circumstances, including the following situation:”
The following sentences are written by the FDA to further clarify their position. The critical sentence, that is often misinterpreted is sentence 2. This sentence means that the importer has no intention of commercialising or promoting the drug to U.S. residents. It does not refer to existing corporate commercialisation or promotion of the drug. In my humble opinion (and the opinion of other more knowledgeable people) this means that a U.S. resident CAN import a three month supply of Sofosbuvir etc.for personal use, from India or wherever else. The USA’s position is in total harmony with the position of Australia and the UK.
From the FDA Bulletin:
1.The drug is for use for a serious condition for which effective treatment is not available in the United States (If you cannot afford to buy it then it is not available to you. Greg)
2.There is no commercialization or promotion of the drug to U.S. residents;
3.The drug is considered not to represent an unreasonable risk;
4.The individual importing the drug verifies in writing that it is for his or her own use, and provides contact information for the doctor providing treatment or shows the product is for the continuation of treatment begun in a foreign country; and
5.Generally, not more than a 3-month supply of the drug is imported
Bringing medicine into the UK
Much of the official concern about prescription drugs is directed at internet pharmacies and people selling drugs illegally, and you’re unlikely to find yourself in trouble for bringing prescription drugs into Britain. It’s not illegal to bring them home, as long as they are for personal use. Even anabolic steroids can be imported for personal use, according to customs officials.
The Medicines and Healthcare products Regulatory Agency (MHRA) however, will take action if they suspect that people plan to supply medications to others. ‘If you are coming back from a country and bringing in huge quantities of medications, then common sense will dictate that you aren’t going to get through those medications yourself, therefore you must be planning to sell them on,’ says a MHRA spokesperson
If you want to bring medicine into the UK, first check that it is licensed for use. Always carry medicines in a correctly labeled container as issued by the pharmacist. Otherwise, bring a letter from your doctor or a personal health record card giving details of the drug prescribed, in case it is queried by customs or you require additional supplies. Remember that some medicines available over-the-counter in other countries may be controlled in Britain, and vice versa.
For further information please contact HM Customs and Excise Advice Centre, Tel: +44 (0)20 8929 0152
So the upshot of all this seems fairly simple: If the medication is for personal use then it is okay to bring in a three month supply. Generally it seems wise to have a doctor’s prescription as well.
I do not know about other countries but I believe most countries follow a similar philosophy to the UK, USA and Australia (apart from Austria and a few other anal European countries). Check with your local authorities to be sure of your country’s regulations.
21st of June 2015
Well today might mark a new stage in the whole Hepatitis C treatment narrative. Our local newspaper The Sunday Tasmanian has done an in depth story on my journey with Hep C and the whole frustrating treatment dilemma facing folk with Hep C. The medication is out there but too expensive for most folk to access.
I am hoping that the Sunday Tasmanian story will get some traction in the National and International news media and that it will stimulate some serious debate about prices and access to the new generation of Hepatitis C drugs and treatment options.
And hopefully that will cause the big international pharmaceutical companies to re-think their pricing policies and make the drug available to everyone who needs it.
24th June 2015
Well I have not written anything here since Sunday because I have been so busy answering emails. I am getting 50 or more emails every day from people wanting to find out more about getting the Indian generic Sofosbuvir. I have made it my task to answer every email personally rather than just sending out a pre-written response. Occasionally I miss an email so if you do write to me and do not get a reply please just write again because I do occasionally miss an email through the day. I will write back.
Today I received my first email from someone who had followed my path into India and returned home with his medication. He wrote that he spent 8 days in India and returned home with the medication with no problems! Below is an extract from his email.
Just got back from India. I was there for about 8 days. I Brought all the medicine back without a problem. I did find out though from the Fibro Scan that 48% of my liver was damaged. The Doctor wanted to put me on Peg Interferon along with the Solvaldi and Ribavirin. However, I didn’t want to do the Peg Interferon. The side effects seemed to intense.
He understood my concern and said that he preferred that I do the triple therapy – due to my level of Cirrhosis. By not doing the Peg Interferon I have to go at least 24 weeks.
I hope I made the right decision.
Due to the damage in my liver, I also had a liver CT scan done to make sure that there was no Liver Cancer. I was clear, but he wants my Doctor here in the US to monitor the levels in my blood and test to make sure it doesn’t appear — just in case it was to small to detect.
So I have to do the Sofosbuvir and Ribavirin and then I plan to go back for more test and to get the Harvoni which I will need to take for another 12 weeks, whew.
He said in quite a few cases the Hep C did return after the initial treatment without the Peg Interferon. Which is why he wants me to come back for Harvoni. Which may become available in India within the next 3 to six months. It is the better option for Genotype 1A plus less side affects.
The cost of all my blood tests was around a little over $100 US in India compared to $1200 in the USA and it took 2 hours for the results instead of the 2 weeks it took here in the USA to get those same tests back.
The cost of the CT Scan was $120 compared to over $1200 in the US.
The whole trip cost about $4,500 compared to the $170,000 for the medicine in the USA not including the blood and liver tests.
I took back MyHep plus Ribavirin. The Ribavirin is calculated by weight.
I went to Fortis Hospital Mohali in Chandigarh (North of Dehli) for all my test and the doctor there was great. His name is Dr. Mohinish Chhabra. One of the leading Doctors in the field. There is a You Tube video that is attached here: http://www.youtube.com/watch?v=dmMfEUuQNKM
One of the reasons I went to Chandigarh is because it is a very clean city, well planned city and is comparatively easy to get around. When booking hotels its better to go to the Hotels directly for the best prices.
I think it is imperative for people, if they can afford it to get the FibroScan done before treatment. It was affordable in India.
BTW, I don’t know how I got Hep C. I have been a vegetarian for 31 years and do not smoke, drink or use drugs
Lets get healthy, all the best and all love,
Please use this information to help others.
P.S. Thanks for your blogging it really did help me in my decision to go to India for the treatment.
Jim has kindly offered to help anyone who wants to replicate his trip, particularly residents of the USA. Please email me and I will forward you his email address.
Ultra Sound Scan, Fibrascan, CT Scan.
Being a novice in the world of liver scanning I am a bit confused about the Fibrascan verses the other scans.
I went and had my liver scanned by ultra sound this morning. I have yet to read the doctor’s report by the actual operator of the scan said that apart from some minor calcification nodules there was no sign of any problems with my liver, no lesions or tumors. Yet my fibrascan said I was borderline F4, meaning very close to cirrhosis. The CT scan agreed with the ultrasound, not the Fibrascan.
Yet there seems to be a lot of reliance on the Fibrascan as an accurate diagnostic device. I don’t know!
Professional insecurity or is it pride or is it fear or is it ignorance?
I have been getting a lot of feedback from folk who have either started their treatment with Indian generic Sofosbuvir or are planning to. What is interesting is the amount of negative feedback some are getting from some health care professionals, which contrasts with the very strong support others are getting from other health care professionals. The reoccurring theme is the concern that the medications are fake or flawed. Some people in the medical fraternity do not seem to realise that about 40% of the meds that they prescribe every day are made in India and the rest are probably made in either China or Brazil.
25th June 2015
The cost of Hepatitis C.
Tomorrow I should get my viral load results back. Of course I am hoping for a great result, even though I am not certain what a great result would be. As I wait I am kind of reflective. The newspaper article got a little national news attention but not much. The papers and the politician both are more interested in suspected terrorists lurking in dark shadows than a disease that will kill about 1,000 Australians every year and cost the Australian government more than $500,000,000 every year. And all that without even considering the personal cost to 250,000 Australians who have Hep C, the debilitating suffering that chronic Hep C brings. Loss of employment, loss of health, loss of energy. And yet today the disease could be utterly wiped out within a year or two, faster and cheaper than the removal of TB or Polio. The medications are available and accessible. The only thing preventing the eradication of Hep C in Australia is the will to do so by our government.
For some reason the media is just not interested in Hepatitis C even though it is killing one thousand Australian each year.
25th June 3 a.m.
I woke about 2 in the morning and lay in bed trying to get to sleep, thinking about the dream I had just had. I dreamed that I was at a party being given by the public relations director of Gilead. It was a jolly time and everyone was having fun. At the end of the party he gave everyone one full bottle of Harvoni tablets. I walked away looking at the bottle. I had no need for these because I was Genotype 2 and pretty much cured. I thought of all the people with Genotype 1 who have contacted me over the last month and wondered who I should give it to. I figured (in the dream) that if they did 24 weeks of Sofobuvir and Ribavirin and finished off with a month of Harvoni they would certainly be cured. Who should I give this jar of life saving tablets to? Eventually I narrowed it down to a Bosnian man in his early 30’s. His wife had been writing to me since I first arrived in India. They had just conceived a child and she was a few months pregnant when they found out that he had Hep C. Neither had been drug users but they had both lived through the horrors of the Serbian / Bosnian war in the 1990’s. She explained to me that there was blood everywhere in those days from the Serbian artillery that rained down on their city. They were sure that was where he had picked up the Hep C. I decided I would give the Harvoni to them. Ah if only it had not been a dream. If only I had a thousand jars of Harvoni to give to good deserving people who needed that drug so badly. If only I had ten thousand jars of Harvoni! One million jars! Even ten million jars would not be enough!
How can the drug companies hold onto these drugs, that could ease so much suffering, all in the name of PROFITS. How do the people who run these companies sleep at night?
26th June 2015 V Day
I woke with a mixture of excitement and anxiety this morning. My appointment to see the doctor to get my viral loads and other blood test results was at 8.45 a.m..
I had had a terrible night’s sleep. The whole family is down with the flu and I was coughing and sniffing all night. Combined with the Ribavirin insomnia it meant I did not sleep well.
At the pathology clinic, where they took my blood samples, they had told me that the results could take up to two weeks to get through to my doctor. I had made my appointment at 9 days after that, who can wait two weeks???
So I got out of bed at 7.30 this morning, had some breakfast and drove into see my doctor. He had been away for two weeks so he was interested to see the results of my earlier bloods and the new ones.
First he pulled out my liver function results: ALT down from 464 two months ago to 20 last week. Gamma GT down from 222 to 67 and ALP down from 98 to 68. He shook his head and smiled. “These are fantastic result!”
Next: the viral loads.
I held my breath as he read through the results on the computer screen then turned to me with a really big smile and said, “No detectable virus load.” He smiled and shook his head again.
I almost cried. I could feel tears welling in my eyes, I do again as I write this. It has been a long, hard, rapid journey. Until this moment in the back of my mind I was worried that something might go wrong, that the virus would still be there. But no it was gone….. well not really totally gone, just at undetectable levels. I will have to keep taking the meds for another 2 months and then get a couple of viral load tests over the following months to confirm that it is completely gone. But everything is looking rosy now… everything is as good as I hoped it could be.
Below is a copy of the test results. I have removed a few identifiers such as my doctor’s name for privacy reasons.
Next the Ultra Sound Results
After all that good news I was not too interested in the Ultrasound results however they were there and we looked at them.
The preamble was extensive but conclusion was pretty simple and satisfying;
” Normal liver apart from one small calcified granuloma in segment 8 Otherwise a normal study”
Even though I am stuffed up with the flu I had a good night’s sleep last night knowing that the Hep C virus is in serious retreat. I know that a “non detectable” result does not mean that the virus is completely gone. It means there are so few floating around in my bloodstream that even 21st century technology cannot find them. But they are there and I will keep taking the medication for another seven weeks to kill off ever last one of the little bastards!
Apart from the good news about viral loads and the blood results generally yesterday was an interesting day on other levels. Let me explain.
Firstly I was contacted by one of Australia’s leading liver clinics. I had helped one of their patients organise Sofosbuvir from India and they had asked him for one tablet so they could test it. It was Cipla Hepcvir. So they tested the tablet and wrote to me to tell me that the tablet was good. It had exactly the correct amount of Sofosbuvir in it and they were happy for their patient to use it.
Next; I received another email from the same clinic, from one of their specialist doctors and he asked if I would mind if his patients contacted me for information about getting Sofosbuvir from India.
So it is great that people are becoming aware of this option of getting their Hep C treatment from India and that they are being supported by their medical practitioners.
28th of June 2015
After being on a high for the previous couple of days the flu really got a hold of me last night. The whole family has it, but it is that rare strain of flu known as Man Flu, which always effects men much worse than women. So I had a terrible night’s sleep, coughing my lungs up, blocked nose, the whole package. Poor me!
Another surprise, when I finally dragged myself out of bed and snuck out to steal the neighbor’s newspaper, was that the Sunday Tasmanian had run another article about Hep C. This time the article focused on the rejection of Sofosbuvir by Australia’s Pharmaceutical Benefits Scheme, meaning that Gilead’s Sovaldi will remain out of reach of most Australian Hep C sufferers.
The article also discussed Gilead’s response to growing international criticism of its pricing policies.
On that line of discussion I was informed by a well placed and reliable source that Gilead has hired a ‘Crisis Manager’ to help deal with (suppress?) the growing news and social media backlash against them and the growing interest in getting generic Sofosbuvir from India.
Within days of this crisis manager coming on board there were tangible efforts to influence the narratives on social media Hep C forums. Suddenly there were a raft of people warning about the dangers of buying generic medication from India. There were personal attacks on my integrity. Claims about scams and ‘snake oil’ salesmen. All designed to create fear.
Of course the truth is a very different thing altogether. The truth is there that are numerous internationally accredited pharmaceutical manufacturers in India who are licensed by Gilead and who produce 100% safe and effective generic Sofosbuvir and Ribavirin that is being used and recommended by gastroenterologists and hepatologists internationally.
So I say again: Take control of your own health, don’t give in to fear, grab hold of hope and get yourself healed!!!
I guess I should not be surprised that my computer was hacked again last night and access to Internet Explorer blocked. Fortunately, after the previous hacking attack I keep my website hardware and software totally separate and all the net at all times except when downloading an update.
A few interesting bits of information have been brought to my attention. One is that Gilead actually donates to many (not all) of the major Hep C advocacy groups around the world, tens of thousands of dollars to each group and who knows how much to certain people with those groups.
So if you contact your local Hep C advocacy group about getting Indian meds don’t surprised if they throw you the “Indian medication is dangerous, fake and illegal.” It is all rubbish.
My own experience, since entering the world of Hep C advocacy, is that only one of my local Hep C advocacy groups has ever replied to an email I sent, that was Hepatitis Australia. That applies to mainland Australia and Tasmania.
Hepatitis Australia’s email maintains the conventional potion that Indian generic Sofosbuvir is, or might be, unsafe or fake despite the fact that is manufactured under license in TGA and FDA accredited premises.
Hepatitis Australia also holds out the hope that Sovaldi, Harvoni and Dalinza will be approved by the PBS soon and that access would not be restricted by disease stage, which is contrary to advice I have received. Of course I hope that Hepatitis Australia is correct and we can all soon have access to Harvoni and that whole new generation of Hep C drugs soon, however there is no sign of that happening in the near future. And if we do get untriaged access to the new medications I do believe we will be the only country on Earth to have achieved that.
I know this might sound like a paranoid rant but it is my experience, but please make up your own mind what is going on. But think about the billions and billions of dollars Gilead is making from the combined suffering of millions and millions of human beings around the world.
Don’t expect anything much from me today. I have got the worst attack of Man Flu in recorded history. It turns out that you cannot take Aspirin with Ribavirin; it thins the blood too much, which explains why I spitting up globs of blood this morning. Next time check medication compatibility dummy.
I am answering emails, seeking sympathy and sleeping… that is it for today!
Well my little flu based rant yesterday annoyed a few folk, some of whom I did not mean to annoy; but I do confess that I can be an annoying person. I guess one should not write when under the weather… Oh well I did and I have to apologize for an inaccuracy, which I have corrected in the text from yesterday.
Hepatitis Australia has written to me pointing out that they did reply to a Facebook post I made on their Facebook page in May. They replied with quite a long email, which may or may not have been a “form” reply. When I did send them an actual email in reply Hepatitis Australia did not answer me. So I am sorry to Hep Australia, I guess I did not think of a Facebook post as an email, my error.
I got another serve from another Hep C advocate who I have a lot of respect for. I responded in some detail about the reasons for my rant. I include an excerpt from that email below:
I have nothing but praise for your organisation and yourself however my comments were the result of a long ongoing conversation with a guy with Hep C in Canada who was actually given false information about bringing generic Sof/Rib from India into Canada by both of Canada’s main Hep C groups. He was told it was illegal, that it would breech Canada’s patent laws and that he would risk jail.
This guy is pretty tenacious and, after we talked about it, he did some
digging around. He contacted the relevant government bodies and was given
written assurance that he could bring the Indian generics into Canada, not by courier but only on his person and only with a prescription. He did further digging
around and found that one Hep C group received $20,000 p.a. from Gilead and
the other $10,000. I have no problem with people getting and needing funding however it should be transparent. It is the same in politics, people rarely donate to
political parties without expecting some favours in return. Some politicians
can resist the pressure for favours, others can not.
On a related but similar theme I have received a number of emails from
people (in Australia) who have approached their doctor for a prescription to
get the generics and have been told by their doctor that it is illegal. In
Australia this is so totally not true. Now I am not saying that the doctors
are lying, they are just misinformed. There is a lot of misinformation
floating around and a load of bad advice.
The realities are simple. Indian generic sof/rib treatment is safe,
affordable and reliable IF it is purchased from a reputable supplier and made by a licensed manufacturer. Advocacy groups should be aware of their particular country’s laws for importation of medicines for personal use and have an information sheet providing clear guidance on this. Not advocating that people should do it but making it clear for people who decide to follow that path. They
should also have an information sheet of Gilead licensed and FDA
approved manufacturers with contact details. Because there are rip off
merchants out there and desperate people are going try to get the meds that
will save their lives and if we can steer them away from the fraudsters and
toward reputable suppliers we are providing them a good service.
Even if Hep C advocacy groups do not feel that providing such information is in
their brief they should NOT be spreading false or misleading information and generating fear.
On that line I would like to add my own experience with ‘donations’ and politics.
Some years ago, when I had a lot more money than I have now, I donated cash to a local politician. He was a good man and I gave him the money because I liked him. I did not expect any favours… but I did get them. I was able to get meetings with government ministers who I could never have met otherwise. I had access to him more or less when ever I wanted. There was nothing illegal but if someone gives you money you will do them favours, they will have your ear. If they take you to lunch a few times a year, or pay for you to go to a convention in Europe you can bet they have got your ear. I mean no disrespect to anyone and I am sure most people in the Hep C world work with great dedication and have great convictions and ethics and could not be bought off by Big Pharma at any price.
1st of July 2015
It is kind of weird that it was exactly this time last year that my wife and I got the killer flu that was responsible for triggering the blooming of my dormant Hep C virus. Only a year ago… it seems longer.
So I was laying in bed wondering whether I should get up and just thinking about stuff. I was actually thinking about a guy who received his Myhep from India today, two days earlier than we had expected. I was thinking how I told him that I had gotten a pill box with the days of the week marked so I would know if I had forgotten to take my pills. Shit!!! Then I realised that I had not taken my evening dose of Ribavirin, which has to be taken with food. So that is then end of any hope of sleep and I am up at midnight eating Ribavirin and bananas… YUM (not).
This then brings me to a request a few people have asked me about; to outline exactly the treatment and how it effects my life.
The treatment is one tablet of Sofosbuvir and 6 tablets of Ribavirin. The Ribavirin is taken three tablets in the morning and three in the evening. Ribavirin must be taken with food.
Sofosbuvir can be taken with or without food and there was no particular time told to take it. I take mine at breakfast with the Ribavirin because then that is done and out of the way. I never forget the morning tablets but often forget the evening ones because evening meals often involve friends, or going out or some other distraction. Tonight is the first time I have actually gone to bed without taking them (I blame the pill box).
My wife usually asks me in the evening if I have taken my Ribavirins. If I have then I tell her that there is no need to remind me… If I have not remembered then I thank her and take them. But she has the flu tonight and was too tired to remind me.
So that is the treatment. I am now 6 weeks into it. Side effects? Not many, not significant.
Certainly my concentration is not good. I make about ten times more typing mistakes than normal (I’m an author so I do a LOT of typing).
I forget stuff all the time, like I will be sitting here and think of something I should write and forget it before I can start writing. I hunt around in my head for words I should know and can not find them. All in all not dramatic but annoying.
It’s midnight now, need I say more?
Grumpiness (or more scientifically known as irritability)
Yes I admit it, my normal shining and positive personality has become a cranky old grumble guts…. well it’s not that bad. I try to watch myself and I have said (and written) some things that I really should not have, however I don’t think it is a big issue. My wife has not left me and my cat still hangs around my ankles at dinner time.
Apart from that there is nothing else that I have noticed. I go up into the forest and cut firewood. I go up into the mountains and fish for trout. I take my friends river kayaking and shooting the rapids up the mighty Huon River. I answer emails I work on my books I work in the garden and drive my car and so on and so on. That’s my life nothing much has changed apart from the fact I have lots more energy than I did 6 weeks ago and I do not have to spend 2 or more hours sleeping through the day.
I am getting regular emails from people who have just done the trip to India and returned home with their medication. And there are quite a few others who I have helped organise to have their meds couriered in (in countries where that is legal). It is great to see this is happening. It is great to see that people are taking control of their health and not waiting around for health department officials to decide their fate.
Yuck!!! I should have had more than two bananas with those three Ribavirin last night. I could feel the tablets rattling around in my stomach all night. Oh well at least I woke up this morning feeling free of the flu… back to healthy me again.
2nd July 2015
A little bit on the side:
Countries that Allow the Importation of Medications for Personal Use
As I have mentioned previously I am in the process of building a data base explaining the rules of different countries regarding importation of Sofosbuvir for personal use. I all these cases listed below I have obtained direct rulings from the relevant government authority of the particular country. One reason for me doing this is to dispel the large amount of misinformation spread about this subject. Many people who are seeking medication alternatives, particularly generic HCV medication from India, are being given false or inaccurate information about their legal status.
Anyway here is the beginning of this here are the countries that definitely allow importation of medication for personal use.
Allows importation of 3 months supply on person or by courier. Prescription advised: Australia: Singapore: UK: New Zealand: USA: Poland: Venezuela: Lithuania.
Allows importation of 3 months supply on person but not by courier. Prescription needed. Canada: Ireland.
If you live in any country not mentioned here and can send me information about your country’s rules, with documentation, I would be most grateful.
For further details, exact documents and links to government websites please visit my website
A lot of people with Hep C Genotype 1 have been told to wait for the arrival of the generic version of the new Gilead Sofosbuvir combo known as Harvoni. This is more effective than the Sof/Rib combination for Genotype 1 a & b.
The generic Harvoni is reported to be coming out in India in late 2015, before Christmas. And we all hope it does, but it might not. From chatter on the Internet it seems that Gilead is working hard on a containment policy to make it difficult for people from countries that are not one of the 91 countries on its so-called access program.
A lot of people with G 1 have been through the hell of the Interferon based treatments and failed and are now tossing up about waiting for the Indian Harvoni or just getting on with the Sof/Rib treatment, which in a best case scenario appears to offer a 69% SVR. Not too bad but not as good as Harvoni’s reported 95% SVR.
So the question is to wait or not to wait? For some people the decision is made more pressing by the fact that their livers are getting attacked and their health is rapidly going downhill. Here is an excerpt from and interesting story along these lines I feel would be useful for some people.
The person referred to has Genotype 1b
I have a good news to share from a friend today. She has been on generic sofosbuvir plus ribavirin for 2 weeks, and her AST/ALT have dropped significantly from 276/312 to 86/129. Although this is not the best treatment option for her GT1b, her doctor wanted to bring her enzymes down first and add other DAA when it becomes available and affordable to her! So, we have to keep eyes open and get her the second DAA as soon as it is available.
(DAA stands for Direct Acting Antiviral)
This is a great example and I think she has a VERY sensible, even brilliant, doctor!
Because the consideration that a lot of people have is that they are very sick now, and cannot access Harvoni or any of the other new meds, and they may die or get very, very sick before the new medications arrive. I believe this approach outlined above will “buy them time” by taking the pressure off the liver for a few months, perhaps giving an SVR (at a better than 50% chance) but if not achieving SVR then at least reducing liver damage until generic Harvoni comes out. It is what I would do rather than just waiting and allowing the liver damage to progress. Of course I am not a doctor and everyone has to make their own minds up based on their own situation and the best advice that they can get.
If you want a copy of a PDF of the most up to date treatment options for Hepatitis C Genotype 1 published by Wolters Kluwer, just email me and I will send you a copy. It’s free.
4th July 2015
Generally feeling fine as far at the treatment goes but feeling annoyed by some of the bureaucratic nonsense I am getting from some quarters, including Australia’s ‘peak’ Hep C advocacy group which is anti Indian generics for the same tired old and false reasons. Of course one wonders why a group supposedly dedicated to helping people with Hep C would be opposed to a safe, cheap and legal treatment that would cure most of the group it is supposed to be concerned for?
To stay in touch I keep a presence on a couple of Hep C Facebook forums, though I got so annoyed with the obviously biased administration of the largest group that I am no longer involved with that. The drug companies appear to have a permanent presence on most of the larger Hep C Facebook pages (as you would expect) and these people immediately attack any post that refers to using Indian generics whilst at the same time espousing the glorious humanitarian efforts of the big drug companies.
The only Hep C Facebook group that I am aware of, that is dedicated to bringing unbiased information about Hep C treatment options, is Hep C Treatment w/o Borders. The admin of this group have only one primary interest and that is spreading factual information about treatment options, particularly Indian generic Sofosbuvir.
When I started writing this record of my experiences with Hep C I never did intend to get into the politics of the international pharmaceutical trade however it now seems unavoidable because I get so many emails from so many people who are suffering, or watching a loved one suffer, because they cannot afford the treatment that would cure them. How can I not seek to understand what forces have created this situation where a cure is available to some and not to others simply on the choices of some board of directors on huge salaries sitting in the luxury of their well appointed office.
For example Gilead’s so called access program allows Indian manufacturers to supply 91 countries, chosen by Gilead. In Asia a person with Hep C in Indonesia and Vietnam can purchase the relatively cheap generic Sofosbuvir from India however a person with Hep C in the Philippines cannot. The person in the Philippines must pay the full US price. It is Buy or Die!
I have had emails from people in the Philippines in this situation, they have no health insurance and there is no free medical service there. The cost of treatment represents more than 10 years wages to many Philippinos. How can they afford to buy? Their frustration is so tragic, here is the cure but they can not afford it, many of them know that they will have a slow and long death, just because they are poor.
The great myth about Gilead’s “Access Program” is that it provides affordable medication to people in poor countries. Even this is a myth. For example in India the cost of month of Sof/Rib treatment is about US$350 (excluding the cost of medical supervisions) whereas the average monthly wage is US$290. So a three month treatment would cost four months’ wages. A six month treatment would cost eight months’ wages. Sofosbuvir is not cheap in India if you are an Indian on the average wage. If you are one of the 300 million Indians earning below the average wage the cost of treatment could be as much as four years wages. Obviously impossible to pay.
The average wage in the Philippines is about the same as the average wage in India, so why do Indians get access to cheaper generic Sofosbuvir and not the Philippinos? One would have to assume that is because the Philippines has such a close connection with the USA and the steady flow of people and packages between the two nations would threaten Gilead’s “Containment” policy. That’s my guess but there may be other reasons?
However one looks at it Gilead’s so called “Access Program” pricing is such that it allows access to the wealthier members of the Earth’s poorer nations but excludes even average wage earners in those countries, ignoring totally the poor. It can therefore be argued that the access program was not created as a humanitarian program but to create price points in different markets and to ensure that Gilead kept control of access to Sofosbuvir in those markets after India rejected its patent application.
How could I not get involved in the politics?
5th July 2015
A lot of people have been emailing me about buying Sofosbuvir online. Alarm bells have started going off for me these last few days because people have written saying things like: “I have just ordered three jars of Sofosbuvir from India and… ” or they write “I am about to order three bottles of Sofosbuvir online… ” or they write ” I am going to order Harvoni from India and I just wanted to ask you…”
Firstly: All genuine suppliers of generic Sofosbuvir in India automatically supply the Ribavirin FREE. If they charge extra for Ribavirin then they are ripping you off.
Secondly: Sofosbuvir alone is NO USE for treating any form of Hep C. Sofosbuvir must be taken with Ribavirin or some other drug such as one of the new DAAs (Direct Acting Antivirals). If someone offers to sell you Sofosbuvir alone then immediately stop dealing with them because they are scammers and do not know or care anything about you or the meds they are selling.
Thirdly: Generic Harvoni is NOT available in India or anywhere else at the moment, anyone claiming otherwise is scamming you. Generic Harvoni should be available in India by, or before, December 2015. That is assuming that Gilead does not block, or attempt to block, its availability. The same applies to generic versions of the various other new DAAs being launched on markets around the world.
Fourthly: If you are buying the Sofosbuvir and Ribavirin treatment then you should not be paying more than US$1,500 for a three month treatment delivered by courier direct to your door anywhere in the world. That includes the Sofosbuvir & Ribavirin inclusive. If you are paying more than that you are being ripped off.
For more information on buying Hep C medication from India please email me and I will send you some information sheets and links to further information.
6th June 2015
Below is the link to the latest EASL PDF summary of optimum Hep C treatment options for the various Genotypes. It is very informative and interesting to read however there is one BIG problem with it: you need to keep in mind when you are reading this is that the authors are assuming that the doctor and the patient have access to all the new antiviral drugs that they suggest for the optimum treatment outcomes.
What we have is the world experts analysing all the data from all the trails run around the world and then giving us the results. However like most expert academics in most fields these guys seem to suffer from living in ivory towers. They have access to all the latest drugs but they seem totally unaware of the fact that most of humanity does not!
There in lies our problem… we do not have access to any of these new drugs and may not for years yet to come by which time some of will be dead and some so damaged it does not bare a thought.
This is the BIG problem with the EASL treatment recommendations, they assume we can get the medication just because they can…. but we can’t!
9th July 2015
My wife and I have been away for a few days up on Tasmania’s north coast so have been off line and away from the computer, just fishing and walking along Tasmania’s beautiful coast line. A lovely break.
Amongst the emails waiting when I returned was this one below; it is not the first like this that I have received and will not be the last but I thought I should publish it to remind people that whilst there are many honest online pharmaceutical businesses there are also still plenty of scams running on the internet.
Dear Greg, Thank for all the information and effort. I understand that you try to save people from disappointment and fraud.
Recently I ordered on-line Hepcinat but it was a fraud. But I don’t regret it because after this I bought an airplane ticket and fly to India like you suggest. Now I feel fine after only one week of treatment. People must know that it is possible to be played by frauds but on the other side it is chance to get life saving medication. I bought Myhep and it’s working.
Many regards Sanja
So if you are ordering your Hepatitis C medication online only do it from people who you can get some form of recommendation from third party. Forums, such as HepMag and other Hep C forums, are a good way of asking for recommendations or enquiring about a company’s bona fides (remembering that there are some scammers hiding on forums too). Some of the Facebook pages like Hep C Treatment w/o Borders will give you tips and advice.
If you want more information about ordering generic Sofosbuvir online please visit my website where I have a page dedicated to that subject.
11th July 2015
Well it is interesting how things begin to build their own momentum and one’s place in the world becomes redefined as a result.
It seems for the moment my work is in helping people get access to affordable Hep C medication. A lot of folk are flying to India themselves to get the medication and it seems a slightly larger number are getting their medication sent by courier. It is great to get emails from people telling me how after only a couple of weeks on the treatment they are feeling so much better, energy levels rising, appetites returning and so on… all using generic India Sofosbuvir and Ribavirin.
Of course there are also a lot of people waiting for generic Harvoni to be released in India. I guess I get about 5 or 6 emails each day just asking me if I know when that is.
So I will explain the situation again. Gilead has licensed several Indian companies to produce a generic version of Harvoni. That is done. The process now in play is that the Indian government has to give the approval for Harvoni to be made and sold in India. Like all government process this is going to take time. Based on previous examples the expectation is that generic Harvoni will be available for sale in India somewhere between October and December 2015. At this point we do not know the price.
Another interesting development for people living in the USA, Canada, Mexico and other American countries, is that Honduras is one of the 91 countries that Gilead allows Indian manufacturers to sell into. Last month one of India’s pharmaceutical companies Natco entered into an agreement with a Honduras company Drogueria Humana S.A. to distribute their generic Sofosbuvir, Hepcinat, in Honduras. I am uncertain as to total costs including the Ribavirin and am not sure about current availability as this has only just happened however this could be a good thing for anyone living in South American countries in particular. It would probably also make it easier for Canadians, who are legally allowed to bring back a three month course of prescription medication (with a prescription) on their person but can not get it sent by courier.
13th July 2015
Well it’s about a month since the first folk I helped to get hold of generic Sofosbuvir began their treatment. Some went to India and brought it home themselves and others got the Sof/Rib treatment sent to them by courier. It is really exciting as I start hearing from people about their results. A lot of folk contacted me after a week or two of treatment to report how much better they were feeling. But the real test is in the bloods. Below is an email I received today from one person with the blood test results taken at week four of treatment with the generic Sof/Rib. The reason I am sharing this is so that you see that the results are fast and positive.
… my ALT reading went down from 160 to 21 and I’m feeling really good about it.
One other patient has decided to import the drugs, my doctor tells me he is very sick.
Love reading your blog,you are probably the only person in the world to clearly articulate the situation from the perspective of a sick patient.
It makes me a little misty when I read these results because I understand what a relief, what a joy, it is when one hears them. You take the medication every day and you think “Am I feeling better or is that just wishful thinking?” So you wait for the blood tests and you hope there will be good news and when there is it is relief and joy at the same time.
Of course I have never met any of these people, though we have written often, maybe spoken on the phone, yet I feel a strong bond with them for we have fought the same battle, made the same choices and we are winning!
15th July 2015
Most nights now I spend an hour or two answering emails from folk. Sometimes this is a very joyful experience when I hear from people telling me how much better they are feeling after a three or four weeks of treatment, like this one:
Literally just off the jet from Asia where my wife and I had a wonderful holiday up country at a beach resort.
To say I am feeling new is an understatement.
Compared to the old regime many years ago this one is nothing and the results are as you say. Increased energy –skin clearing up …
Of course I read that and it is a real lift. Of course there are the sad cases too, like this:
Thank you for your fast response , I’m adding in this email to my brother and sister. Let me explain some facts about our case:
-My mom got Hep C during my birth 43 years ago because a blood transfusion undetected until 15 years ago. She is fighting with cirrhosis and consequent Hepatocellular carcinoma. She lives in ****** (a country in South America), We are all from ******** but I live in Spain as I said. The drug is not available there….even here in Barcelona.
-Our country has huge political and economical problems including exchange control (we cannot exchange our local currency to $ because government regulations) so we are doing our best to get the money in order to buy this drug.
-Sofosbuvir could be shipped to ********* with no problem (in this case we have no regulation in our country with personal use drugs)
-We have no problem to get a prescription from our Doctor in our country (We already got it)
This is very sad, a family trying to save their beloved mother who contract Hep C through no fault of her own. In a country where there is no hope at all of getting government assistance and only the very wealthy could ever afford Gilead’s Sovaldi. Yet even with this type of email I feel that at least there is hope and that because of the Indian generic drugs there is a chance that this loving mother can be saved.
Then last night, the last email I received before going to bed hit me like a bolt out of the blue. It was so far out of the left field that it took me a long time to process it. I will share it with you, tell me what you think?
Hi Greg, I am concerned that the attention you are generating is going to result in a reaction from Gilliard (sic) that is going to make it more difficult for those that are or will be relying on a generic option. I cannot be sure why you are so actively promoting the Indian generics, but the timing is not so good. Most of us are waiting on Harvoni, and your active forward promotions are making any idea of being able to get large quantities of people sneaking in under the spotlight rather moot. Accessing affordable meds from India has been happening for quite some time. I would say large scale for the last decade. I have been watching this particular (HCV) space for years. Now it appears to be getting very close, just hope nobody fucks it up. There is no way I can know what is in the existing contract between Gilliard and the Indian manufactures, but there is a good chance it precludes them from selling to countries such as the one I live in. Sooner or later the contracts will expire and need renegotiating. There will be many more for many different drugs, and it is possible that this exposure will result in future contractual changes that winds up effecting people not abundantly wealthy, such as you and I. I cannot see an upside from highlighting purchases of generics from India. The scale of the HCV problem is such that there was never going to be any hiding of the activity. It does not need any promotion. I hope it is not made very difficult before we even get started. Thanks ####,
I thought about this guy’s comments quite a bit. Why am I promoting Indian generics? Why am I putting the spotlight on that option?
Firstly I understand your concerns however Gilead is well ahead of all of us in this game of trying to restrict access to Indian generics. They have a well defined containment policy and strictly limit which countries their licensed Indian manufacturers can sell to.
However the crux of the matter is that neither India nor China recognised Gilead’s patent on Sofosbuvir. This means that anyone can manufacture Sofosbuvir in both India and China and sell it to whoever they want.
To try to contain this Gilead has entered into these licensing agreements with some Indian companies in exchange for manufacturing technology and a royalty. However there are plenty of Indian pharmaceutical companies who have not done a deal with Gilead and are and will manufacture Sof in India for local and export consumption. Gilead can not stop that. Soon China, within months, will come on line as well.
One strategy Big Pharma has for slowing the flow of generics has been to spread fear campaigns about the risks of generics and make people too scared to buy them. My campaign is to ensure that all people know about how affordable and effective generic Sofosbuvir is and how good many of India’s pharmaceutical companies are. I hope the same will soon apply to generic Harvoni.
All people, not just a small clique in the know, should know that these news drugs are available and affordable. Everyone everywhere who has Hep C should know that there is a cheap effective cure available. That is why I am promoting and shining the spotlight on Indian generics; that is the upside of highlighting Indian generics, to ensure that everyone knows that they are there and available.
Good luck with your generic Harvoni when it comes through, I’m glad you already know about it, a lot of people do not.
Of course I did not get to sleep for a while thinking about this email, wondering about my motives and motivation. Wondering what I was doing that was making this guy so angry. I know how many people do not know about the Indian options and I know how many people need to know… millions and millions of people need to know and when they do know I will stop blogging and spend my time fishing or hiking through the mountains, far away from computers and blog and emails. But until that day comes I will keep bring attention to this issue and that gross unfairness that millions of people are suffering ill health and death when a simple cheap cure is available to them and the only thing preventing them having access to that cure is greed.
17th July 2015
Well things get stranger and stranger.
If you have been reading this blog for a while you will know that part of what I am doing is helping people to access affordable Hep C medication. At the moment this all comes from India in the form of generic Sofosbuvir and Ribavirin.
Depending of a person’s wants and needs I either send them information on traveling to India to get the medication themselves or I send them information about how to arrange to have the medication couriered to their home.
If people wish me to I also act as a facilitator and help them to organise the necessary documentation, to buy from a reliable supplier and to get the courier organised. Part of this involves folk sending me money which I then forward by Western Union to the people in India.
This process has been working really well and very effectively until this week when, out of the blue, Western Union refused to transmit any more funds from me to India. When I asked why they were doing this they did not give me an answer. When I explained that I had been using Western Union to do business with India for nearly 14 years with never any problem they still refused to give me a reason why they were blocking me.
According to Wikipedia the only reason Western Union gives for blocking funds is if they suspect someone of funding terrorism!!!
So I tried again and they blocked me again. Fortunately, thanks to the good will of the folk in India, this has not interrupted the supply chain as the people in India have been very understanding of the delay and kept processing the orders and sending them out even without payment (though this can not go on for long).
To circumvent Western Union’s blockade of the supply of Indian generic medicine to people suffering from Hep C I have now made the change to using international bank transfers which are more expensive and take three or four days for the banks to process. This, in turn, delays the shipment of medication.
Now whilst all this is quite annoying and rather an inconvenience the BIG question is: “Why has Western Union taken this action?”
There is certainly no legal reason for blocking me, everything I am doing is completely transparent. Indeed I have made an effort to be excessively transparent and happily give an exact break down of all costs and expenses to anyone who wants to know. As I have said this is not a business and is not run for profit, in fact if someone is suffering any kind of financial difficulty they only have to explain that to me and I will happily arrange for the medication to be sent to them at below cost.
So why has Western Union blocked me?
Has Big Pharma leaned on Western Union?
Western Union is a vast USA based company that has managed to dominate the international money transfer market by buying out competitors and offering a range of innovative products. Does Western Union have connections with the equally vast USA based pharmaceutical companies? Do their C.E.Os play golf together?
I don’t know the answers but let’s just have a look at the facts. Since I have become involved in trying to help people gain access to affordable and reliable Hep C medication my computer has been hacked three times (at least) and Western Union has mysteriously blocked my ability to send funds to India.
Draw your own conclusions.
20th July 2015
Another person who I helped get their generic Sof/Rib meds from India just got the results of their 4 week blood test. The LFT results were all great and her viral load is down from the 3,500,00 level to <1 (below one) and yet people in Australia and other parts of the world are still being given the Interferon Ribavirin treatment with all its terrible side effects and people are still meeting resistance from their GPs when they ask for a prescription. This even though I now get people being referred to me by their specialists for help getting the generic Sofosbuvir from India. Why? Its just so simple…. people are being cured!
In Tasmania alone there are at least 15 people now using the Indian generics to treat their Hep C.
As for me… well I’m past the 8 week mark on my treatment and it’s the time that everyone warned me as being when the Ribavirin side effects would become most obvious. So how am I feeling?
Well it’s a weird convergence of things. The drama with Western Union freaked me out much more than it should have. It made me feel a slight, enduring panic, a slight feeling of confusion that is very uncharacteristic of me.
I was really annoyed at what Western Union did. We had worked out a very good procedure that enabled fast and efficient dispatch of medicines at minimum cost. Now we have to create a new system which will be more expensive and slower, not a lot more expensive and not a lot slower so it’s not that big a drama but my mental and emotional reaction to it was too much.
I am pretty sure that is the Ribavirin.
Some people call it Riba Rage… it has not been that severe for me but the level of agitation I feel is quite noticeable now, where it was not a week ago. Perhaps the Western Union incident acted as a trigger or perhaps I am spending too much time working on the whole Hep C thing or perhaps I just hit the 8 week mark and exploded like people warned me might happen???
Tomorrow I will take a couple of days off and go up into the mountains for a bit of prospecting and gold panning, that should clear the Riba Rage….
And just one more thing. Beware of scams, there are a lot floating around at the moment as the buzz about the arrival of generic Harvoni and the other new drugs increases. Do your home work. Check with someone you can trust. If you are unsure about prices or anything feel free to email me. I get at least two or three emails every day from someone who has been ripped off or is being offered what is clearly a scam. There are genuine and reputable mail order pharmacies out there but there are also lots of crooks. Be sure of who you are dealing with.
23rd July 2013
Well a couple of days in the mountains is a good thing, I wish I could do that once every week! Spent the days wandering through the bush finding old mine shafts and scaring kangaroos who would have rarely, if ever, seen a human. Found a few specks of gold, nothing bigger than a grain of sand, the real gold was the peace and quite and the beauty of Tasmania’s wilderness.
But now I am back at the computer and things are moving along pretty well. I had a couple of emails from Western Union waiting for me. They were crazy because they called me by the wrong name, one email thought my name was Chad and the other thought my name was Enrique. Both were clearly dealing with a complaint unrelated to me but it was interesting to read the emails from their unhappy customers who, like me had been randomly blocked from sending money through Western Union.
Then at 6 p.m. last night I got a phone call from Western Union, someone who could actually speak perfect English and on a phone connection that did not require super hearing and a static filter to actually hear what was being said.
This gentleman was obviously higher up the chain of command than anyone I had previously spoken to and it seemed he had even taken the time to actually read my emails.
He was very apologetic and assured me that my account was now no longer blocked and that it would not be blocked again. A minor miracle!
But we shall see. I will drive into town this morning and send money for an order and see what happens!
Fortunately the Western Union debacle has not created too many problems. Various people have volunteered to let me send the money in their name. Even total strangers who heard about the situation have offered to send the money through Western Union using their name, ID etc.
It just goes to show if something is good and being done for the right reasons nothing can stop it. I was much humbled by the show of support.
Getting a Prescription in the UK
I get an email almost every day now from a Hep C sufferer in the UK who can not get a prescription for Indian generics from their doctor. It seems that English doctors in particular have a great aversion to this. I quote from today’s email:
I asked my specialist Hepatologist here in #### (English city) if he would write me a prescription to get the medicines from India, but he categorically refused. He used the words “I cannot condone getting medicines from abroad!”
Now I have to say I find this astounding as more than 40% of the prescribed medicines used in the UK come from India and more than 80% come from “abroad”. Seriously does this specialist know what is going on in the world of pharmaceutical manufacturing? What about patient care? Curing the patient? I am speechlessly annoyed.
Not to mention the fact that it is perfectly legal for a patient to import these meds into the UK for personal use.
Well I am not raging but I can see how the feelings I am getting could become that. As I am just about to finish week 9 the feeling of tension and anxiety is almost always in the background. I know that the wrong trigger could easily turn that into blazing anger and I am astounded how anyone ever got through the old treatment regime that required one to be on Ribavirin for 9 or 10 months WITH the interferon as well. No wonder so many folk dropped out of that program and I have only admiration for people who make it through.
I really need to go and get my week 8 blood tests.
24th July 2015
Oh oh I am so naughty…. I should have gone for my 8 weeks blood test last week but I keep forgetting to make the appointment! Now I’m at the end of week nine and still not got the tests. It’s not the Ribavirin… it’s just me; I’ve always been like that. I’m not forgetful I just get distracted easily.
Before I get onto my Western Union rant again I will share another slice of good news that I received today from another person who has just got the results of their 12 days blood results back.
G’day Greg, good to hear your raging along well. After 12 days of treatment my viral load is <15 down from 1,910,000. Next Thursday is my 4 week bloods and I’m fingers crossed it’s ZERO. I would like to order another 3 mth supply of SOF/RIB. Do I need another prescription? Thanks for all the hard work your doing. I don’t know how you can do it while on treatment. I’d like to be able to help you somehow but I’m flat out coping with things here at the moment. For me the difference with having ribavirin without interferon is I’m not crying. All the other sides are what I was expecting.
This person had done the old Interferon / Ribavirin treatment and it had failed so he was not looking forward to eating Ribavirin again. Fortunately it was not as bad as it had been with the Interferon but still he was not enjoying the old Riba.
So far everyone is getting great results from their generic treatments and those results are flowing through into the medical system. Medical practitioners are talking about it and specialists are now suggesting that their patients use the Indian generic Sofosbuvir because they can not get sofosbuvir any other way. Once we can get access to generic Harvoni and Daclatasvir we will just about have this beast beaten!
Also as I am getting a lot of emails now and I would like to tell you that I feel it my duty to answer every email I get, personally. If by some chance you write to me and you do not get a reply please write again as it just means your email slipped through somehow. I will answer everyone.
Now my Western Union rant!
So after them phoning me and apologizing for all the inconvenience they have caused and assuring me that everything would be fine I drove to town and sent the money for an order to India. Three hours later India sent me an email and said it was still blocked.
So I rang Western Union again and was apologized to again and assured (again) that it would be all fixed tomorrow.
So the next day I drove into town and sent the same order again (third time) and three hours later I got the email… still blocked. Unfortunately I had just swallowed my evening dose of Ribavirin and it kicked in when I was on the phone to some Chinese person in one of Western Union’s Asian sweatshops…. I will not go into details but after an hour, yes ONE HOUR, on the phone I finally got put through to their head office in the USA and spoke to someone who could understand what I was saying and spent another half hour talking to him. He was very sorry for the inconvenience. He would contact his supervisor. The supervisor would contact me by email or telephone in less than 24 hours blah blah blah. Of course 24 hours has passed and I have heard nothing from Western Union. In the mean time we have started sending all money by international bank transfers. It takes three days to process rather than being instantaneous so that slows down the delivery process but at least it happens smoothly.
25th July 2015
Well I had another phone call from Western Union first thing this morning. Once again they apologized for the problems that having my transactions blocked has caused me (and many other people waiting for their medication). I was assured (again) that the problem would be fixed by Monday USA time (Tuesday Australian time) and that it would not occur again.
Well we will see? I sincerely hope that this time Western Union is able to keep its promises but based on my past experiences I will continue to use bank transfers until I am certain that there will no repeats of the debacle of the last 10 days, which I know has blown out delivery times for many people who are anxiously awaiting the arrival of their medication.
The situation in the USA
Suddenly I am getting a lot of emails from the USA. I had noted previously that I received comparatively few messages from the USA however I now understand the situation better. People who did not have covering health insurance were hoping, praying, that they would be eligible for Gilead’s low cost access program for people who could not afford to pay the $90,000 to $180,000 for a treatment.
It now appears that there has been a major tightening of this program and many people are learning that they are “not sick enough” to qualify. Below are two emails I received this morning, as examples of how people are feeling now that this last hope has been snatched away from them.
Thank you for all your input. My heart hurts because I am stunned that I have been rejected again by Gilead’s “assistance pharmacy.” I am TOO healthy. Ended up finding out I have Hep C about 6 years ago………… Never a drug addict, somehow I got this disease. Thought about going to India but am hoping Harvoni will somehow be available from India by December 2015. It meant a great deal to me to read about your journey. I don’t want to wait until I am very sick to finally get help. I would very much like to be on your mailing list, blog list, newsletter list. Will be hopeful that somehow, some way, someone will understand that there are very few in the world who can afford $94,000 for medication. Warmly ######
Hello, I am reading your webpage regarding your experience in India. I am interested in the process for ordering Sovaldi and Ribavirin online. My insurance is denying my prescription coverage because I’m “not sick enough” and in the US the cost of the treatment is upwards of $100,000. Any information you can provide would be appreciated. Thank you! #####
In this last week I have had a number of similar emails from the USA. To have had hope and then to have it snatched away is a cruel thing indeed!
Now for some interesting news.
While we are all waiting for generic Harvoni to be released in India I have also been also investigating the availability of generic Daclatasvir. In particular I have been looking at the Chinese pharmaceutical company Mesochem because I know of a doctor here in Australia who has imported some of their generic Daclatasvir and had it tested and was happy with the results. I also know of one of this doctor’s patients, who has Genotype 3, who is treating himself with this Daclatasvir and getting good results. I don’t know him personally but I know a good friend of his.
Also another doctor I know, a specialist, has ordered some of Mesochem’s Daclatasvir and will have it tested soon. The results will be interesting!
However the problem is that Mesochem only supply in concentrated powder form (API). A three month treatment comes as just 6 grams of powder, which must then be divided into 84 exact doses in a form that can be stored and consumed safely.
Here I reach a bridge I am not able to cross. I do not know how these doses could be safely made and I know nothing about converting API’s into consumable tablets.
That said their price is very reasonable at about US$200 including delivery charges for enough Dac for a three month treatment. It is just the issue of getting the dose right and in a safe form.
If anyone has any comments on this I would really like to hear from them. Please email me.
According to the EASL treatment summary the Sofosbuvir and Daclatasvir are an ideal treatment for genotype 3, reducing the treatment time to 12 weeks instead of 24 and removing the need for Ribavirin and Interferon. Though I note some practitioners still include the Ribavirin in the treatment regime.
This is the company’s blurb about themselves.
Beijing Mesochem Technology Co., Ltd. was founded in 2009 as an independent high-tech enterprises specializing in Pharmaceutical chemicals and fine chemicals, it aims to to adapt to the business development of Beijing Huafeng United Technology Co., Ltd established in 2005.
The company is located in “Pharma Valley”‘- Beijing Economic and Technological Development Zone(BDA), devotes to active pharmaceutical ingredient, intermediates and Pharmaceutical technology development services. It has independent R&D ability and right of import-export operations and has already established stable cooperation relationship with hundreds of pharmaceutical companies and research institutions both at home and abroad.
Feedback would be appreciated
26th July 2015
I received the email below last night and found it interesting. The writer claimed that the website of Hepatitis Central has removed the contact details of all Indian liver specialists or Hepatologists who can treat Hep C in India. I checked the website and it is true, there are none listed. I have tried to contact Hepatitis Central for comment or feedback but have not been able to find a contact link on their website. There may be one there (somewhere) but I can not find it. Anyway read the email and make up your own mind. The Hepatologist I saw in India was trained in Edinburgh in the UK and practiced 15 years in London before returning to set up his practice in his home town of Chennai. Does Hep Central really believe there are no competent doctors in India or is there another reason. I would like to hear their side of the story. If anyone reading this has connections with Hep Central please ask them to email me.
… I have an interesting observation that you would be interested in.
Here is this website – http://www.hepatitiscentral.com- that used to have listed Indian doctors who would treat Hepatitis C. Last year there were some in India.
I looked today – and they have erased them all! Like as if they all disappeared.
Now it seems clear that big pharma made them do it. Obviously, hepatitiscentral.com cares for human lives so much that they black out doctors that can save lives – in India. Disgusting, isn’t it? I lost all respect for them.
Make up your own mind about that email. I don’t know why they took down the contact details for Indian doctors.
Here is another interesting email regarding the situation in the USA, which contains some sound advice to people seeking to access treatment in the USA.
Just wanted to tell you what is going on in the US. You are 100% correct
in your guess for why there are more emails re generics. One thing,
people still should appeal these denials and go through the entire
process until they reach a clear dead end – it may take months. (It
sucks). Just because there is a tightening at Gilead’s end doesn’t mean
that people can’t still win approval through their insurance.
Also, yesterday the FDA approved daclatasvir (Daklinza) (with
sofosbuvir) for GT3. We were all caught by surprise. Now we will see if
insurance will cover it. I suspect it will be hard to get. The wholesale
acquisition cost of twelve weeks of Daklinza is $63,000. That would
practically be a bargain if it could be prescribed without Sovaldi,
which it can’t. Sovaldi costs $84,000 for a twelve-week course, so with
Daklinza the total will cost of $147,000. That is $1750 per day for two
The daclatasvir issue is important for a number of reasons, particularly because it removes Ribavirin from the treatment regime for people who are intolerant to it. For most people the existing treatment reports, such as EASL, suggest that daclatasvir also reduces the treatment period from 24 to 12 weeks whilst lifting the SVR rate.
The appeal of daclatasvir also means that, like generic Harvoni, the scammers will be out there in force. One apparent scam has already surfaced. This is a website promoting a supposedly generic version of daclatasvir supposedly made in Bangladesh by a company called AuraPharma, selling Aurahep, or Aurhep as daclatasvir. My friends in India have checked this out and there is no such company registered in Bangladesh or India. Further it has no presence on the Internet other than through a very suspect “press release”. So please be wary of scams related to daclatasvir .
As I mentioned earlier I and my friends are working hard on the daclatasvir issue and hope to have some kind of news about it soon.
It continues to be very frustrating that these wonderful new drugs are out there, ready to save lives and cure this terrible disease but are only available to the wealthy or those fortunate enough to have very good insurance cover (and sometimes even that is not enough.).
27th July 2015
I have a funny feeling that my email account was hacked last night. If you get any emails from a Chinese company offering Hep C medication in concentrated form (APIs) could you please let me know. I would be very disappointed if this has happened as I was hoping to find an ethical company who could supply generic Hep C medicine at a fair price but if they have hacked my email address book then that is just a reminder that when it comes to $$$ it is difficult to find ethical people or companies. Sad but true! I hope this has not happened but a couple of people have received these emails and it seems a weird co-incidence.
Not Hacked Again
Perhaps I am getting paranoid? Perhaps it’s the Ribavirin? (nice having something to blame).
So I was not hacked… Here’s the story:
I have been emailing a doctor in the USA over the last month and today he forwarded me a copy of an email from Mesochem quoting prices for Sof and Dac concentrates. He wanted to know what I thought of the email. I was astounded because I thought he had received an unsolicited email however it turns out that he had actually contacted them asking for information, he just did not mention that in the email. So I jumped to the conclusion that my email address book had been hacked!!! Whoops…silly me.
A storm in a teacup? I could understand that some readers might think:
“Looks like Greg is losing his marbles.”
In my defense the Chinese do have a bit of a record for industrial espionage via computer hacking. Well they didn’t and it wasn’t and I am pleased about that. So sorry if I went off half cock.
28th July 2015
Generic Harvoni’s ETA in India announced
Generic Harvoni ( sofosbuvir and ledipasvir in one tablet) is the magic bullet for people with HCV genotype 1.
Gilead licensed a number of Indian companies to produce a generic version of their product earlier this year and people have been waiting anxiously for the Indian governmental processes that would allow for the manufacture and sale of this important new drug.
Yesterday I received news from a well placed source in India that the release date of late for generic Harvoni will be late November this year and that the products, made by several different manufacturers, including Mylan, will be on the market and for sale by mid December.
The price on the generic Harvoni is still not known but I am guessing that the Indian version of Harvoni will be around the US$1,000 mark for a three month treatment, perhaps the price may be a little higher but one hopes not too much higher.
As mentioned previously the Chinese API pharmaceutical company Mesochem is producing concentrates of various Hep C medicines including Daclatasvir. I have been doing some research on this product and getting some feedback. It all looks pretty positive and would be a great boon for people with G3, G5 and G6 in particular.
One of the issues is the fact that the Dac only comes in concentrated powder however it has been suggested to me by a couple of people that people should be able to find a suitably qualified chemist who could divide that powder up into accurate doses and put it into capsules mixed in with a safe filler if need be. This is what I have heard people are doing. Of course I am not suggesting that people do this only reporting what I have heard that people are doing, under the supervision of their doctor, and that these people are reporting they are getting good results.
Of course to get these results, according to the EASL reports, the Daclatasvir would need to be combined with Sofosbuvir.
If considering this sort of thing please get advice from a medical professional and remember that I am not a doctor and I am not giving medical advice, just reporting what I hear people are doing.
(I have been advised to include this disclaimer: Greg Jefferys Blog is not intended as medical advice but is a record of Greg Jefferys’ experiences in treating his Hepatitis C with Generic Sofosbuvir acquired in India. Greg Jefferys blog is also intended to record general discussions around Hep C issues and by people treating or seeking to treat their Hepatitis C infection using affordable generic medicines)
29th July 2015
The mix of emails I get everyday is amazing. Some are very sad and some make me very happy. The best are when I hear from people who have just passed the four week mark in their treatment using Indian generic Sofosbuvir and have received the results of their blood tests. I get those virtually every day now and this morning I got one of those from an English citizen whose doctor in the UK refused to write a script. Not deterred this person went to Spain and found a doctor who was a bit more educated in the 21st century world of international pharmaceutical. He wrote the prescription and is monitoring the treatment. Please read this and you will see why I get SO frustrated with doctors who think that there is something wrong with medicine just because it is not manufactured by white people living in Switzerland.
I have just had a phone call from my Doctor. He cant believe it. He has checked and double checked but I am completely virus free!!
I could cry. I am SO happy.
Ok. My lungs are a bit shot from past behavior, but i am a fit 55 yr old
That’s after only 3 weeks Greg! Unheard of!
I had an incredibly high viral load – it was 10.5 million (thingy’s per blood thingy). Now zero!
Bilirubin down a little to 3.8 (direct)
Pancreas enzymes up a little but he is hoping its just a blip with the medication.
I must finish it all!!
This person has Hep C genotype 3 and is doing the Sofosbuvir and Ribavirin treatment for 24 weeks. The tests were done by the German Pathology and Microbiology group Medizinisches Versorgungszentrum
Now compare that email with this one:
Greg, I am writing on behalf of a friend in the UK. He is in a difficult situation with HCV which he has had for many years and cannot seem to obtain treatment in Britain. We have spoken of the possibility of treatment in India but he is reluctant to travel there and is reticent to try Indian drugs from the Internet, however, your blog gives him new hope. If you are willing please forward me the information needed so that he can obtain treatment. Thank you and thank you for being open and generous with your treatment blog, you give heart to many people. Regards ####
So we have this situation where people from the UK have to go to Spain or India to get medicines that are legally available to them in the UK but they cannot get a UK doctor to prescribe the meds. What is going on???
Then we have the recent situation where a friend of mine was booted off a UK Hep C forum for posting a link to my website!!!
So we come back to this issue of who is running these forums and what are their agendas? Are they there to help people get cured from Hep C or are they there to instil fear in people and make sure no-one buys Indian generics but instead sits around hoping that one day the government will give them some American made medicine?
Seriously it drives me nuts. Every person who I know that I have helped to get India generic Hep C medication has had fabulous results. In Australia now there are three major liver clinics giving full support to patients who are using Indian generics as well as at least that number of liver specialists. Most doctors (not all) here will now write a prescription to help their patients get generic Sofosbuvir and Ribavirin from India. Why is that happening? Because in the last 8 weeks more than 100 people with Hep C in Australia have been successfully treated with these medicines with outstanding results.
Yes I know the results still have to be tested over 12 months and then 24 months for a confirmed SVR but the early indications are outstanding. Meanwhile in the UK and the USA and Canada people are dying because their bloody doctors are too conservative, too narrow minded, to see that there is a cure for their patients right there in front of their noses, all they have to do is write the script and monitor the treatment.
Sorry for ranting but I am passionate about this and the stupidity of this situation drive me nuts!!!!
31st July 2015
My Liver Function Test Results for week 8
These test results below show my liver enzymes from September 2014 through today. As you will see, after 8 weeks of treatment with generic Sofosbuvir and Ribavirin all my liver levels are perfect, they could not be better and I am stoked.
I wish that by this time next year that everyone with Hep C could access the new generation of Anti-viral drugs, whether through a government health program, a health insurance policy or by buying Indian generics.
Of course I know this is a dream because even the Indian generics are too expensive for most people in many countries to be able to afford.
It saddens me.
Hep C Advocate Groups: Who is advocating for what?
As I have mentioned before, some of the large Hep C advocacy groups receive significant, sometimes massive, funding from the big drug companies, and that is only what we know about, the above board funding.
So it is no surprise to see some of these groups pushing the fear campaigns against people accessing affordable Indian Generic medicines.
An example of the anti-generics/anti-India push is found in an article published on the Hepatitis C website, Hepatitisc.net entitled:
“Medical Tourism with HCV”
Medical Tourism isn’t a solution to getting treatment for Hepatitis C
The logic of this article, by Rick Nash, is so full of errors and flaws it is either incredibly naive or deliberately constructed to bamboozle people. The article claims that if people from Western countries go to India to get affordable Hep C medication this somehow limits local peoples access to the drugs. This is complete nonsense. It is like saying if I go to India and buy a T shirt that means a local person will miss out on a T shirt. The reality is that there is a local market and a market for tourists and people will make T shirts for the tourist market and T shirts for the local market and they will be different prices.
There are seven licensed manufacturers of Sofosbuvir in India, they can produce as much Sofosbuvir as they like and sell it in at least 100 countries, including India. There is no limit to the amount of Sofosbuvir these companies can make. Then there are the unlicensed manufacturers who can make Sofosbuvir legally in India because it is not covered by patents. They can also make as much as they want and sell at what ever price they want.
Then Rick pushes the fear barrow, big time, he claims that a person is breaking the law if he or she imports medication for personal use. This is also utter rubbish. He claims that such a person might face jail of massive fines. Again this is just not true.
The US law code he quotes is Title 21, 333 Penalties. I just spent an hour studying this code and the directly related laws and they have nothing what so ever to do with the importation of generic medicines from another country for personal use. Either Rick has not taken the time to read the relevant sections of the code or he has misunderstood them or he is being misinformed by a third party.
So this article appears to be another example of people and organizations attempting to dissuade people from going to India to get affordable and effective treatment for their Hep C. As I have been to India as a medical tourist only ten weeks ago with profoundly pleasing results I find it both astounding and distressing that such an inaccurate article could come from an organization purporting to be advocating for and on behalf of people infected with Hep C.
I should also add that since I have returned from India I have helped people from third world countries like Venezuela, Cambodia, Indonesia, Vietnam, Thailand, Malaysia, China, Panama, Africa as well as low income countries such as Romania and other Eastern European countries to access these generic Hep C medications. I have helped them by giving them the contact details of honest, reliable suppliers so they can either go to India and buy them or get them couriered to their home. Whichever suits them better.
I ask again “Who are these people really advocating for?”
2nd August 2015
Well only two weeks to go until the end of my treatment.
I guess it is time for a review of the last ten weeks.
Firstly at week ten I have had no detectable virus in my system for 6 weeks and my liver function test results are better than they have ever been in my life. All enzymes well inside the normal range.
First the treatment. I have Hep C genotype 2. If there is anything lucky about finding out one has Hep C it is finding out that it is Genotype 2. The easiest to kill!
So I began taking one tablet of generic Indian Sofosbuvir each day along with 6 tablets of Ribavirin. Three Riba with breakfast, three with dinner.
Now here I must say that I heard a lot about the side effects of Ribavirin when I started my treatment but my experience of those side effects has been minimal, they have been slight. Talking to other folk that started treatment about the same time as me most have had the same experience with Ribavirin. The exceptions seems to be when people are on other medication for other health issues. These folk seem to do it tough. It is my belief that if you are in reasonable health and not on other medication then the Sof/Riba treatment is pretty smooth sailing. The thing I would add, and its just my thoughts, is that one should make sure that the Ribavirin is taken with a good deal of food. Of course the label says take it with food but I am saying not with a light snack or a nibble, a proper meal, so there is plenty of food in the belly when the Riba hits the digestive juices. With the meal not after or before the meal.
The other two big issues with Ribavirin that the nurse at the Hobart Hepatitis clinic made certain I was aware of were:
1. Beware of anemia.
2. If you are of the age where you might be thinking about having kids don’t do it while you are taking Ribavirin. There is a growing body of evidence that suggests Ribavirin may store in the male and female reproductive system and it takes a while for it to leave the system. So if you are in the reproductive phase of your life talk to your doctor about.
What about the side effects?
First a bit of insomnia, but that settled down when I got in the habit of doing 20 minutes or so of yoga before bed. I still wake up a bit in the night but mostly get back to sleep.
Next the famous Riba Rage. Yes I am aware of this. Once I had just swallowed my evening dose of Ribavirin when I had to talk on the phone with Western Union. I blew my top!!! I was so insane that I was weeping and screaming at the same time… whoops. Sorry Western Union guy. I probably wrote a few things on this blog when I was a little too fired up with Ribavirin as well. But with all that if you warn your friends and family that this might be an issue they probably (hopefully) will understand when you say things you later wish you had not.
Typing skills: yes my typing has suffered dramatically. I just finished writing two books and my Master’s thesis. I do a lot of typing. If I had been on Ribavirin while writing my thesis it would have taken me ten years to finish it. Ribavirin definitely caused me to type words back the front. Thank God for spell checker!
That’s about it, my haemoglobin count was normal, no other dramas.
Day 11 Week 4 Week 8
Just to explain these results for people not familiar with the LFT:
The main liver enzymes that are monitored are ALP, Gamma GT and ALT. As you can see in September 2014 all my levels were through the roof, which is why the doctors all thought I had liver cancer. When I gave up drinking alcohol and made dietary and lifestyle changes my results improved but were still very, very high.
My first test after beginning treatment was at day 11. This tested showed that all my liver enzyme levels except Gamma GT had dropped to normal ranges. By week 8 the results showed that my liver was probably as healthy as it has been since I was a child. These are spectacular results that other people I know using Indian generic Hep C medicines are getting.
Before I start off this new page I would like to share this brilliant diagnostic tool that is on the web. In a few simple steps it looks at your genotype and general liver health and produces a simple comparative chart of how effective the various treatment options will be.
In saying that it is not as comprehensive as the EASL Report on Hep C treatments but its a lot more fun and easier to read! Click the link below
5th August 2015
Generic Harvoni and Daclatasvir
Here is a worrying post from Gilead’s website… Thanks to David for bringing it to our attention. NOT a surprise but annoying.
“There can be no guarantee that marketing approval for Harvoni® will be granted in any of the low- and middle-income countries where registration is pending; any marketing approval, if granted, may have significant limitations on its use.”
The most likely containment procedure that Gilead might put in place is limiting sales to a one month supply at a time. This is what was done in Pakistan with Sovaldi.
Once again I am appalled at the greed of these huge, wealthy drug companies. That they should plot and scheme of ways to make obscene profits while people die slow and terrible deaths knowing that the cure is there but is being priced out of their reach. Not because the drug is expensive to make but because the makers are just so damn greedy!!!
Generic versions of Harvoni are the big hope for people with Hep C genotype 1. However there are alternatives, such as Sofosbuvir and Daclatasvir. This combination is also very effective against a number of Hep C genotypes but being treated with a combination of the two branded versions is even more expensive than Harvoni! A three month Sofosbuvir and Daclatasvir treatment would cost you about US$135,000
Now here I am going to stick my neck out here and say that I know of a number of people who have purchased generic Daclatasvir from Mesochem in China.
The product is in concentrated powder form with 6 grams of concentrate constituting an 84 dose lot for a 3 month treatment and cost is about US$200 delivered. These same people have had the product tested and it tests pure and bona fide. They have also found chemists with the skills and expertise to divide the concentrate into the correct doses and put it into capsules with the appropriate filler and the correct capsule type, apparently it is not a hard thing to organise.
The people who have done this are pioneers and are getting good results for their brave choices.
Here I must make very clear that I have no connection at all with Mesochem. I have emailed their representative Rachel several times to discuss the product, the company and prices. If a person should choose to try this path then they would have to contact Rachel directly and deal with her. It is a choice that a person must make themselves based on the best available information and medical advice.
I can also say that I know of two doctors and some other medical groups that have chosen this particular course.
The contact person is Rachel, email: email@example.com
India Generic Sofosbuvir Manufacturers
I would like to point out that the factories that make the licensed generic Sofosbuvir in India are inspected and approved by numerous international authorities. For example Cipla, which makes Hepcvir is approved by US FDA, WHO-Geneva, MHRA-UK, TGA-Australia, SUKL-Slovak Republic, APVMA-Australia, MCC-South Africa, PIC-Germany, Danish Medical Agency, ANVISA-Brazil, INVIMA- Colombia, NDA-Uganda, Department of Health-Canada and MOH-Saudi Arabia and a whole lot more.
So here we have a Company that has been approved by virtually every significant government pharmaceutical authority on Earth, that has been producing quality low cost medicines for 80 years.
Another example is Hetero Pharmaceuticals who manufactures Sofovir.
Hetero offers a proven history providing reliable supply of both drug substance and drug product to most of the world’s top 20 global pharmaceutical companies and is the largest manufacturer of APIs and intermediates to the Indian pharmaceutical industry.
In addition, Hetero’s cGMP-compliant manufacturing facilities are approved by the highest regulatory authorities in each region (e.g., US FDA, WHO-Geneva, Australian TGA, Spanish Agency of Medicines & Healthcare Products, ANVISA-Brazil, IDA-Netherlands, etc.
Does anyone really believe that Cipla or Hetero are going to make fake medicines??? A reality check by all paranoid medical professionals is required.
Personally I consider that there is an underlying racist Paranoia in this perception that because a drug is not made in a “first world” country like the USA or Switzerland then it is somehow suspect.
It continually surprises me that this type of totally illogical fear of fake, or counterfeit, medicines arises amongst educated medical professionals. Of course there are counterfeit medicines just like there are counterfeit Rayban sunglasses and counterfeit Rolexes and counterfeit dollar bills but this does not stop us buying sunglasses or Rolexes or using dollar bills. It just means one needs to use a little common sense when buying these things. Know the supplier. If you buy a set of Raybans off a guy selling them from a barrow in a side street then there is a pretty good chance they are going to be fakes. If you buy them from a shop that is an authorised Rayban dealer and has been in business for 40 years from the same premises then you can be pretty sure that you are buying real Raybans; it’s not rocket science it’s just common sense. The same applies to generic drugs. Do the research on the manufacturer and supplier, it’s not hard. If you are not sure than ask someone, like me, who knows. I am happy to suggest reliable suppliers.
Many of these medical professionals who are so fearful of fake meds, particularly in the UK but also in other countries such as Australia, do not even know that it is perfectly legal for their patients to import these medications for personal use. This is very surprising given that such information is so important to helping patients with Hep C achieve good health outcomes.
Some people have suggested to me that this ‘ignorance’ is actually the result of a sustained campaign of misinformation mounted by Big Pharma to try to stem the flow of generics into first world countries.
8th August 2015
USA deliveries of Sofosbuvir for personal use.
My friends from India recently successfully completed a “worst case scenario” delivery of a three month treatment of Sofosbuvir and Ribavirin tablets to the USA.
As some of you may know the way that Customs works in most countries is that there is a random sampling of goods arriving from overseas origins. In the USA this random sampling has increased due to the issues surrounding international terrorism.
In practical terms this means that, lets say, one in every ten parcels comes in for superficial scrutiny and one in every twenty comes in for close inspection.
Close inspection means that contents and documentation is thoroughly inspected.
This happened recently with a shipment of Sof/Riba to a person with Hep C in the USA. This shipment had all its documents and contents inspected by Customs. The recipient was contacted and further supporting medical documents were asked for. The parcel and documents were then brought to the attention of the FDA who also inspected them closely. The result was nearly three weeks of official inspection of this shipment by every related US government entity.
The shipment of 84 generic Sofosbuvir tablets and 504 Ribavirin tablets was delivered to the person who ordered them and that person has now begun treatment.
So much for all the nonsense being peddled around by the fear mongers that it is illegal to import medicines for personal use into the USA.
My message to you folk in the USA; don’t get sucked in by the fear mongers, right now hundreds of people around the world are being cured of their Hep C by using Indian generic medicines. Despite what some people say your government does not want you to be sick or to die. If you can find a couple of grand then you can be well on the way to curing yourself of Hepatitis C.
Most other countries have very easy rules for importation of meds for personal use by their citizens. If you need help just write to the relevant government authority in you country, explain the situation and get an official ruling. You might be surprised how easy this process is. It might be even as simple as checking a government website.
If you need help or advice about your country please feel free to contact me as I am building a data base on various countries’ rules regarding importation of medicine for personal use.
10th August 2015
My detailed analysis of the FDA position on importing medication for personal use. (I am not an expert in US customs laws but this is what seems like a logical interpretation of what the FDA have posted on their Website.)
The Legality of Importing Medicines into the USA for personal use.
The issue of importing generic Indian Hep C medication is a controversial one in the USA. Not because it is illegal, because it is not illegal, but because there is so much misinformation about this, particularly in Hepatitis C forums and other Hep C social media groups. This misinformation comes as complete myths, half truths and outright lies. One can only assume that most of this misinformation has its source in persons or entities with a vested interest in dissuading people from using Indian generics to cure their Hep C.
By happy coincidence I am doing my PhD on the development of myths in the news media so it’s an area in which I have some understanding and considerable interest.
There are two area’s to consider when asking the question “Is it legal to import medicine for personal use into the USA?”
What is the FDA’s official attitude to this?
How is this reflected in reality?
Firstly I will analyze the FDA’s published policy, which is found on their website at this address: http://www.fda.gov/Aboutfda/Transparency/Basics/ucm194904.htm
My comments are inserted in the FDA text in red print.
The FDA official post reads as follows:
“In most circumstances, it is illegal for individuals to import drugs into the United States for personal use. This is because drugs from other countries that are available for purchase by individuals often have not been approved by FDA for use and sale in the United States. For example, if a drug is approved by Health Canada (FDA’s counterpart in Canada) but has not been approved by FDA, it is an unapproved drug in the United States and, therefore, illegal to import. FDA cannot ensure the safety and effectiveness of drugs that it has not approved.” (This can reasonably be described as a preamble)
“FDA, however, has a policy explaining that it typically does not object to personal imports of drugs that FDA has not approved under certain circumstances, including the following situation:”
1. “The drug is for use for a serious condition for which effective treatment is not available in the United States. “(Obviously Hep C is a serious condition. The big question here are the two words “not available”. Firstly low cost generic Sofosbuvir is not available in the USA. People then argue, “Ah yes but Sovaldi is available.” This is only partially true because it is not available to everyone. It is available to some people but not most. It is available if a person has the correct health insurance or it is available if a person is wealthy enough to pay the $90,000 to $180,000 for a treatment or it is available if a person qualifies for some form of charity treatment. Otherwise Sovaldi is not available.
Here we have to get a little legalistic (I apologize for this getting complex but I will finish with a simple summary).
The word “available” is the critical word here:
The standard dictionary definition of “available” is: “Able to be used or obtained; at someone’s disposal.”
synonyms: obtainable, accessible, easy to be had, ready for use, at hand, to hand, at one’s disposal, at one’s fingertips, within easy reach.
So if something is too expensive for a person to purchase then it is not available to them. For example a penthouse in Manhattan is not available to me because I cannot afford one; nor is a Rolls Royce or a 50 carat diamond or a first class airfare. These are all not available to me because of their price.
Therefore the Hep C treatment using Sovaldi in the USA “is not available” if a person genuinely cannot afford it. I believe that any reasonable person would agree with this.)
2. There is no commercialization or promotion of the drug to U.S. residents;
(This means that the person importing the drug does not plan or intend to promote or commercialize the drug to U.S. residents. In other words that the drug is solely for personal use.)
3. The drug is considered not to represent an unreasonable risk;
The FDA ruling on generic drugs is: “Generic drugs are chemical equivalents of approved brand name drugs. Since the safety and effectiveness of the brand name drugs have already been shown, generic drugs do not have to be tested for safety and effectiveness, as long as the generic drug is shown to be the same as an already approved drug. Generic drugs are approved under abbreviated new drug applications (ANDAs).”Gilead licensed India generics all conform to this requirement of being the same as already approved Sovaldi.
4. The individual importing the drug verifies in writing that it is for his or her own use, and provides contact information for the doctor providing treatment or shows the product is for the continuation of treatment begun in a foreign country; and
5. Generally, not more than a 3-month supply of the drug is imported
1. Low cost generic Sofosbuvir is not available in the USA and Sovaldi is not available to most, or many, people.
2. If importing for personal use there is no intention for commercialization.
3. Generic Sofosbuvir is the chemically the same as the approved Sovaldi and does not represent an unreasonable risk.
4. You cannot bring in more than a three month supply
How is this reflected in reality?
In reality many people are bringing in many different forms of medicine for personal use. I know of a number who have brought generic Sofosbuvir into the USA. I have not heard of even one single person who has been prevented from receiving a shipment of generic Hep C meds from India so long as they conform to the FDA requirements mentioned above. It might have happened but I’ve not heard of it.
13th August 2015
Well it’s one of those weeks when a whole lot of stuff is converging for the perfect storm… well I hope it’s not a storm; but a whole lot of stuff is converging.
Tomorrow is the last day of my 12 week treatment on generic Sofosbuvir and Ribavirin. By co-incidence I am also booked in for my last lot of blood tests and my viral loads tomorrow as well: 9 a.m. sharp! I will share the results when I have them next week.
After the blood tests I drive out to meet the film crew from a national current affair program who are planning a story on the whole Hep C controversy. Then on the weekend I am hoping a similar story will be taken up by the national newspapers.
If those two things happen I am again hoping that one of the stories will get picked up by an international news service and cause some ripples around the world.
The Hep C story needs more attention!
Tens of millions of people are suffering and dying from a disease that could be cured… even entirely removed from the Earth as has been done with Smallpox and is being done with Polio; the only thing preventing the cure of these millions and millions of people and the eradication of this terrible disease is greed. Greed and the power that immensely wealthy corporations can exert over governments and individual politicians.
It could be a busy week for me next week.
14th August 2015
Another interesting day.
It began in the morning with me swallowing the last Sofosbuvir tablet of my 12 week treatment and ended with me swallowing the last of the Ribavirin. I’m very glad to have finished the pill popping!
After breakfast I went straight into the Hobart Hepatitis Clinic to organise blood and viral load tests and met the clinic’s new nurse who is replacing J while she is on long service leave. We discussed how many people in Tasmania and Australia have begun using India generic Hep C medication and how many other clinics and doctors are supporting the patients who are taking this course in order to gain access to otherwise inaccessible medication.
After I had my bloods taken I drove out to Huonville to meet up with the film crew again. This time they were interviewing M who was one the first person in Tasmania that I had helped to get the Indian generics. She is a bit more than nine weeks into her treatment and generously and bravely agreed to be interviewed by the current affairs program. I did ask a number of people but the stigma associated with Hep C is such that all felt uncomfortable with the idea of a national news story on their very personal battle with this disease, which I totally understand. Only M agreed to an interview.
It was very moving for me sitting in the background and listening to M’s story again, hearing of the debilitating effects of the disease and the soul destroying knowledge that the cure exists but is inaccessible because of price. The waiting and hoping that one might get on a trial or that some other miracle will happen.
Another amazing co-incidence occurred because M had received her 8 week viral load report the previous day and she had agreed not to tell me about it so that she could spring it to me on camera.
Brilliant news… her viral load has come down from the millions to none detected! It was a privilege to share in her joy.
It was also great to see how she was looking ten years younger than the first time I had met her and bubbling with energy and vigor.
After the filming was done I went up the Huon River trout fishing, no mobile phone reception and not a computer for miles. The river was in flood and each fish I hooked managed to use the flood currents to throw the hook and escape. Lucky fish, unlucky me! But it was a lovely relaxing day.
Back at home I swallowed my last three Ribavirin tablets with dinner and then settled down to work through my correspondence.
Finished the night with a game of Canasta with my lovely wife who again beat me.
15th August 2015
I have written previously of UK Doctors’ fear of prescribing generic Hep C medicines (genericnophobia) and have recently had correspondence with a London GP and a Welsh patient consulting a liver specialist in Wales that sheds some light on the source of this strange psychological condition, genericnophobia, which affects more than 90% of British medical practitioners.
The source appears to be the legal department of the British Medical Association, the Doctors’ Union, who appear to be advising British medical practitioners that they are entering “a legal minefield” if they prescribe India generics.
Really???? That is strange because British doctors prescribe their British patients India generic medicines every single day as about 40% of all medicines prescribed in the UK are made in India.
The big difference here is that prescribing these particular Hep C Indian generics will save countless lives but at the same time deprive huge and powerful multi-national pharmaceutical companies of a small portion of their already obscenely massive profits.
Has Big Pharma has got the British Medical Association running scared?
It looks like that to me.
Has there been a legal minefield in Australia where the legal system is essentially the same and doctors are now routinely prescribing generic Hep C medicines for their patients? The simple answer is no… quite the opposite, people who have been sick for years are now well again. People who were desperate for a cure are now being cured.
So where is the legal minefield?
Or is the British Medical Profession being manipulated by a Big Pharma inspired fear campaign while British people with Hep C are growing sicker and dying?
What happened to a doctor’s primary concern being the health of their patients?
Make up your own mind about what is happening but it looks like the BMA is being manipulated to me!!!
Yet there is hope.
The article below is a news article from the Imperial College London, one of the world’s most eminent medical colleges. It describes the terrible suffering caused by the current pricing policies on the new Hep C medicines and refers to the great results happening in Australia because medical practitioners in Australia helping their patients get access to the Indian generic medications.
Australia might have lost the Ashes but we are winning the battle against Hep C. (that’s a cricket based comment for readers who have never heard of cricket or the Ashes)
Genotype one: Indian Sofosbuvir and Chinese Daclatasvir
People with Hep C genotype 1 should remember that Harvoni is not the only effective Hepatitis C treatment option. A cheap and effective option that is available now is Sof/Dac or Sof/Dac/Riba depending on your disease and liver status.
Depending on where you source your product this treatment will cost between US$1,350 and US$1,500 total, including shipment costs. This option would involve Indian Sofosbuvir and maybe Ribavirin and Chinese Daclatasvir. Read the EASL Report below:
EASL Report May 2015 Genotype One
Patients infected with HCV genotype 1 can be treated with an IFN-free combination of daily sofosbuvir (400 mg) and daily daclatasvir (60 mg) for 12 weeks (A1) • Based on data with other IFN-free combinations, adding daily weight-based ribavirin (1000 or 1200 mg in patients <75 kg or ≥75 kg, respectively) is recommended in patients with cirrhosis (B1) • In patients with cirrhosis with contra-indications to the use of ribavirin, extending duration of treatment to 24 weeks must be considered (B1)
More on Mesochem. (I stress again that I have no connection of any type with Mesochem)
An email from a Chinese associate who volunteered to research Mesochem for me.
Sent: Thursday, August 13, 2015 12:20 AM
To: greg jefferys
Subject: 回复： 回复：about Daclatasvir
Finally my call was forwarded to their manager, Mr. Cui, and I briefly asked several questions. They did have API grade Daclatasvir,purity at 99%. And the price is 200RMB per gram (about $33/gram)if i buy 6 gram, and the price can be lower if order more. Most importantly, they can provide a contract for the order, not just a receipt. In China, most time a receipt didn’t have much use, and it is not an invoice. As what i mentioned, there are many sources of API grade daclatasvir in China. Based on your friends in Australia,Mesochem seemed to be a relatively more reliable source with very reasonable price for API powder. I have also joined several different Chinese chatting group of Hep C patients, and some used the daclatasvir from Japan or hongkong(supposed to be the real one made by BMS, price at $12,000 for Japan one, about $25,000 for hongkong), someone used the daclatasvir from Laos/Ireland(actually made by Chinese, asked for $4000-5000). I talked to one whose dad used the daclatasvir from Laos/Ireland (the seller is at Shenzheng, China), and his dad’s HCV has been cured. i contacted the seller, and he said he can supply the generic daclatasvir. I have thought about how to make the choice for a while, to save some money and get a reliable source. Now the information you got also said that India would have the generic havoni ready by this December, I will probably wait until that time. Thanks a lot for the help your offered.
Please let me know if other thing i can help regarding the daclatasvir from mesochem.
18th August 2015
As a result of yesterday’s newspaper article I had an interesting phone call from an Australian doctor, a GP, who has been prescribing Chinese Daclatavir+Sofosbuvir as a hepaptitis c treament for his patients for a couple of months now. He told me that he had sent samples of the Daclatasvir to a couple of Australian government laboratories for testing and the results came back that the concentrate was 99% pure, as Mesochem claimed it would be. He told me that all the patients he had been treating had reached no detectable virus status within 4 weeks.
He said he had no problem finding a compound chemist to encapsulate the concentrated Daclatasvir and mix it with the appropriate fillers. He told me that six grams of concentrate makes 100 doses and is more than enough to complete the normal 3 month treatment.
Costs? Three months of Sofosbuvir US$1,100 (with or without Ribavirin); Three months of Daclatasvir US$260. Total cost of treatment for Genotype 1 with 98% success rate US$1,440 (assuming $80 for chemist to encapsulate concentrate.)
Every day now I talk to people who are reaching “No Virus Detected” status at week three or four. An 83 year old gentleman whose doctors had told him that he would not live to see this October has reached NVD status in just four weeks and his liver functions have all returned to normal ranges after more than ten years of illness.
So I ask myself “What are people waiting for? Are they waiting for their governments to help them? Are they waiting for their insurance companies to save them? Are they waiting for the Drug Companies to give them some free meds? What is everyone waiting for?”
Take responsibility for your health. Take a risk! Just do it! The cure is available now. Do it!
Oh here is a link to the newspaper article that ran yesterday in Australia
if you want to have a look at it.
21st August 2015
Here is my only post for the day.
This is the link to the ABC 7.30 Report. The 7.30 Report is an Australian national current affairs program and they did a piece on the work I am doing with making the affordable Hep C treatment medications accessible to people.
It is a well balanced bit of reporting and the written web news article also gives greater depth and insight than what could be squeezed in the the TV piece.
One result of this piece going to air is that I am currently swamped by emails from people with Hep C or with friends or family with Hep C. Many of these are desperate and frustrated to the point of anguish because they have failed the Interferon treatment and can not access the new drugs; all the time knowing their health is going down hill fast.
Children are are writing asking for help for their parents who have Hep C. Parents are writing asking for help for their children who have Hep C. Friends are writing on behalf of friends with Hep C.
There is so much suffering out there and all the drug companies want is money. It is blood money!
23rd August 2015
Sunday evening and by mid afternoon I had succeeded in clearing all my emails. I think I have answered over 400 emails since Thursday night. Of course now there are another 40 or so waiting to be answered but I’m going to have a half day off tomorrow and finish my painting of a Tasmania Tiger (thylacine). I paint Tasmanian animals on boards of timber made from Tasmanian wood. I love to paint the Tasmanian Tiger because it is a beautiful creature that was supposed to be extinct, hunted out back in the 1920’s and 30’s, but I know they are still alive out in the inaccessible Tasmanian wilderness avoiding humanity.
Two things have risen in my mind after answering so many emails. One is that so many people have gone through hell on the Interferon treatment, ended up with serious permanent physical to their bodies and often had no cure for their Hep C either. Yet people are still being prescribed Interferon treatment? And you know a lot of the doctors who are suggesting Interferon are also telling people not to use India generic Hep C meds because they might be of inferior quality.
So their reasoning is take the interferon treatment, with a 50% possibility of a cure and a high chance of permanent organ damage but don’t use Indian generics because there is a very small possibility that they might be sub standard (or not). No-one I know has found the Indian generics inferior. Go figure that logic out! It might have something to do with maintaining the status quo.
The other thing that rises in my mind is I know that Big Pharma is watching me and, honestly, it scares the crap out of me.
But this thing I’m doing needs to be done and somehow it has fallen on me to do it. I never intended to become a Hep C advocate, it just happened, but I can see that I can help and I will help and I will keep on helping until justice and fairness and compassion win against the forces of obscene greed. And win they will, eventually.
26th August 2015
Its been difficult getting motivated to write in this blog, not for lack of things to write about but because I’m spending so much time answering emails that the thought of more screen time is not appealing. I make it a point to clear all emails every day so that they don’t build into a huge backlog, so last night I was up until eleven.
Yesterday I spent the afternoon up the Huon River trout fishing. It was a spectacular day, sun shining down through clear blue skies highlighting the snow capped mountains of Tasmanian Southern Wilderness, golden wattle flowers everywhere. No trout caught but a magic day.
In Australia, where the publicity being generated around the prices of Hep C meds and associates issues has been quite intense over the past 6 weeks we are seeing interesting things happening.
Firstly it is much easier now for people to get prescriptions for Indian generic Hep C medicines from their GPs. There a still a lot of doctors who will not help their patients with this but I guess about 50% now will. This compares very favorably with the USA and the UK where 99.9% of doctors still refuse to write their patients a prescription for generic Hep C meds.
A number of liver specialists and Liver clinics will now also support patients using the Indian drugs to cure themselves. But still a number of major liver clinics refuse to support these patients. In Melbourne, Canberra and Hobart there is across the board support. In Sydney one major liver clinic supports patients and the other refuses to. In Brisbane there is no support from that liver clinic, in deed the feedback I have received is that they refuse to have anything to do with India generics… Why?
Another interesting thing is that patients asking advice about whether or not to use Indian generics to treat their Hepatitis C are being told by their health care providers that they should not do this because the new drugs are going to become available on the PBS in two or three months. Which is what they have been saying for more than 12 months now. And which I personally don’t believe. Indeed I believe that this delaying tactic has its source in pharmaceutical companies. Its that old delaying tactic. In two or three months patients will be told.
“Oh the new Hep C medicines will be out in a couple of months, three at the most.”
And when that time comes around they will be told. “Oh they are just around the corner, just wait another month or two.”
Meanwhile people’s livers were healthy enough are now getting cirrhosis.
I was spun the same rubbish by Hepatitis Australia a year ago and if I had waited I would now have cirrhosis or liver cancer.
Why wait for help that might never come when you can help yourself now?
The other thing that these so called Hepatitis Advocates like Hepatitis Australia (Who all receive hundreds or thousands of dollars in ” sponsorship” from the drug companies) saying is that the treatment will not be triaged. That is to say they are saying that the new treatment will be available to all.
WHAT A LOAD OF CRAP!!!! (whoops am I getting rabid??? I can not even blame the Ribavirin anymore!)
Even the presently available and much cheaper Interferon treatment is triaged. Nowhere on this planet is there a single country providing these new meds through any type of health insurance, whether public or private, where that treatment is not triaged. In most countries the absolute best figures are that about 5% of people with Hep C will get access to these new Hep C drugs. If you are not sick enough to get access then you will just have to wait around until you get sick enough. Until you get cirrhosis, until you liver is irreparably damaged. But don’t get too sick because you will not qualify then either.
But the drug companies will make their obscene profits anyway, regardless of who gets sick and who dies.
So wait a couple of months and see if it’s true. Then wait a couple of more months to see if you are sick enough to qualify for the treatment. And if not wait a few more months until the virus does a bit more damage to your liver.
Or do something now!
27th August 2015
Did I sound a bit angry in my last post?
That’s because I was. I was angry because every day I get emails from people who are desperate to begin hepatitis C treatment with these new antiviral drugs and they go to their doctor and the doctor refuses to write them a prescription.
Or their specialist sneers at them and asks,
“How do you know what is in these India drugs? How do you know they are safe?”
Asking that of people who have endured the hell of an Interferon treatment that did not cure them.
Asking that of people who are in constant pain because there is no treatment available to them.
Asking that of people who are either to healthy or two sick to qualify for access to trials with the news drugs.
Asking that of people who are afraid of dying before their children become adults or before their grandchildren are old enough to remember them.
That is why I am angry.
Conversely, at the same time there are numerous wonderful, enlightened liver clinics, liver specialists and doctors who are giving their patients using India generics full support and seeing those patients cured, viral loads disappear, liver functions return to normal, pain fade, energy return, health return.
What is in these Indian drugs? Hope, Health and Happiness.
28th August 2015
I’ve just been catching up replying to comments on my blog and realised the darn thing is so long now that a lot of people have not read some of the important issues and are also not aware of my policy of answering all emails or my email address or the fact that I have a seperate website that has a lot of extra information on it.
First: my email is firstname.lastname@example.org I answer all emails (except for nasty ones which I ignore).
Second: Just Google my name and you will see my website hepatitisctreatment.homstead.com
Third: I can put you in contact with the most reliable and honest suppliers with also teh best prices. This includes contacts for honest suppliers of Daclatasvir and other Hep C drug concentrates (APIs) from China. I have done all the research and am happy to make it available for free. I do not charge. I am not doing this to make money.
Lastly and most importantly KNOW YOUR GENOTYPE. If you do not know your genotype then you can not make the correct treatment decisions. It is super important.
Now that is out of the way I would like to talk again about Harvoni. Everyone is waiting for generic Harvoni… yes but why?
Harvoni is not the only effective treatment option for Genotype 1. People seem to think that Harvoni is the best thing since sliced bread… yes it is good but there are others that are just as good, or so close to it that it does not matter. It is the Sofosbuvir combined with other drugs that is the big deal.
Harvoni is Sofosbuvir and Ledipasvir, yes it works well but so does Sofosbuvir and Daclatasvir, as does Sofosbuvir and Simeprevir.
These are all effective against G1 and recommended Interferon free treatment options in the latest EASL Report. Of course the condition of your liver and whether or not you have failed previous treatments will influence how you are treated but don’t think that generic Harvoni is the only option. There are others and they are effective and they are available now. Even Ledipasvir is available now if you want to get the concentrate and get a chemist to make it into doses for you. Plenty of people are doing that now.
So if you think your liver is not far away from cirrhosis don’t dilly dally , don’t wait around. Find out your genotype, research your treatment options and do something now… before it is too late!
And email me if you want reliable contacts
31st August 2015
Firstly I would like to alert people to the fact that my email account has been hacked. If you get an email from anyone saying that they are a friend of mine or anything like that please delete it immediately. I NEVER, Never, NEVER give out anyone’s email address or contact details to anyone. I am very sorry about this but I thought my firewall and antivirus software was pretty solid but obviously not perfect against the resources some people can access.
Also I need to again mention that there are a LOT of Harvoni scams going around now. I make the point again that there is no generic Harvoni in India at the moment, or anywhere else in the world. It is possible for a person to make a Sofosbuvir + Ledipasvir combination, which is essentially the same as Harvoni using Chinese APIs. Buying these APIs direct from the manufacturer in China would cost about US$2,500 then the cost of having a compound Chemist make the mix into doses would be about another $100.
So if someone offers you a three month course of generic Harvoni for US$ 1,500 obviously it is a scam because the sale price is lower than the cost of the ingredients.
Now here is an interesting event. The Times of India, India’s largest circulation newspaper, ran a story about my work. I have to admit that I laid the boot into the doctors of the USA and the UK in this article and I regret it if I offended the many good doctors in those countries however I have to say that I am absolutely appalled by the fact that it is next to impossible for a person with Hep C in the USA or the UK to get a prescription for Indian generic Hep C drugs, even if they are at death’s door. Would doctors in these two countries rather see their patients suffer and die rather than write them a script that will more than likely cure their disease. So yes the article is harsh but it is harsh for a reason. The reason is that I get dozens of emails every day from desperate people with Hep C in the UK and USA who can not find a doctor who will write them a prescription or monitor their treatment. Of course I am angry.
3rd September 2015
A lot has happened since I last had time to write anything as the flood of emails has not abated and that consumes most of my computer time. Some very good things are happening but I want to start off with a theme I have discussed previously. The desperation of people with Hep C.
I would like to start off with a metaphoric story:
A person is in the desert dying of thirst, they struggle on searching for water until one day they come upon a man with a water cart. What relief! Water and plenty of it… the suffering is over.
“Please give me water,” the dying person begs.
“You must pay me for it first,” replies the water man, “This is my business and I need to make a profit.”
” I am happy to pay,” replies the thirsty, dying person, “I need about two days of water to get out of this desert. How much would that cost?”
“That would be $120,000,” answered the water man.
Dismay and anguish swept across the dying person’s face.
“But that is impossible, I do not have that amount of money. I am dying of thirst, surely you can spare me enough water to save me? I will give you all the money I have!”
“No,” answered the water man, “This is business, you must pay my price or you must die, it is your choice.”
The thirsty, dying person begged and pleaded but the water man refused.
“Buy or die,” was his only response.
Eventually the dying person died. The water man covered the body with some sand so it would not offend other potential customers and, pouring himself a large glass of cool water, he returned to waiting for someone who would pay his price.
And so it is. Every day I get emails from anguished and desperate who are dying of a disease that they know can be easily and simply cured, who are dying because they do not have enough money to pay the waterman’s price.
Every week I get at least two emails from people who tell me that they have been contemplating suicide because of the overwhelming burden of the Hepatitis C virus. The social and personal stigma of it, the debilitating hopelessness of it.
I am pleased and humbled to be able to offer some hope to these people, the cure is there and it is accessible and affordable. There is light at the end of the tunnel. There is hope. There are other water men.
The New Medicines Are Now Available
There are essentially four available non-Interferon based treatments that effectively treat all Hep C genotypes. There are other treatment options but these one are all available as some form of generic now. They are:
Sofosbuvir + Daclatasvir
Sofosbuvir + Ledipisvir (Harvoni)
Sofosbuvir + Simeprevir
Sofosbuvir + Ribavirin
According to the 2015 EASL Report Hep C treatment summary these combinations, or mixes of them, will give a cure rate of above 95% on all Hep C genotypes. The duration of the treatment and exact combo will vary according to the individual’s liver condition as cirrhosis will extend the time of treatment and may require the addition of Ribavirin.
But the fact is that these are all available now.
Sofosbuvir and Ribavirin are available as tablets from India now.
Ledipisvir, Daclatasvir and Simeprevir are all available as API concentrates from Mesochem in China.
If you live in Australia Simeprevir is also available on the PBS and can be purchased from the chemist with a prescription from your doctor.
Please use the link below to reach this simple but accurate diagnostic tool
Hepatitis Australia and the Issue of Drug Companies Sponsoring Advocacy Groups
You may have noticed that I have been grinding an axe about the issue of Hep C advocacy groups taking sponsorship from the big Drug Companies. I use Hepatitis Australia as an example because they are the peak Hep Advocacy group in Australia and because I know that they get about $240,000 p.a. in “sponsorship” from the drug companies and I believe that this large amount of money greatly influences their policy decisions. It might not but it appears to me that it does.
Here is an example in an email I received today from a leading Australian Liver Specialist.
I was just curious about how you felt about the Hepatitis Australia forum…. I wrote a tiny article for that site (that I had contributed to with advice fairly extensively over the years) suggesting that generic DAAs may become more generally available (and was quite specific and deliberate about NOT mentioning any methods of obtaining them or who might be supporting the acquisition of the DAAs or the patients who elected to take them) and very promptly got “you are permanently banned from using this site” in reply.
Given the desperate positions of some of the people reporting their situations on the site I thought it a little odd.
Now what does that suggest about where Hepatitis Australia’s loyalties lay?