A Hepatitis C Survivors Story

This is my story, a Hepatitis C survival story, it is a story that I hope will help other people with Hepatitis C step outside the box and take control of their own destiny, take control of their own health.

A Hepatitis C Survivors Story

In 2017 my website was destroyed by a malicious act of online sabotage in an attempt to take my Hepatitis C work offline, to make the information I was providing about the generic treatment of Hepatitis C more difficult for people to access. Fortunately, a number of people came to my assistance and helped me create a new website very quickly. In the process, I was able to salvage and publish some of the content of my old website, however, I believed that the bulk of my old website was lost forever. Then, recently, I discovered that I had accidentally backed up my old website on an old computer that had been isolated from the internet for several years.

Over the past couple of months I have been retrieving the data on that old computer and converting it to a series of Word documents, which I intend to publish over the next couple of months. I am resurrecting my old website. It does make quite interesting reading as it charts the journey that both I, and everyone else around the world has been on since 2014 when Direct Acting Antivirals such as Sovaldi and Harvoni began to be used to treat Hepatitis C.

This is the first installment and covers the period from when I learned that I had Hepatitis C to when I learned about generic Sovaldi being available in India.

July 2014
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.

August 2014

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?

A Bit Of Background

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 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:

  1. Female
    2. Young
    3. In good general health
    4. Pregnant

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 Hep C
So I chose to manage the Hepatitis virus rather than suffer the side effects: I would wait it out until a better drug therapy became available.

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.

Telling People

The issue of whether or not to tell people I had Hep C was the next thing for me to consider. It was a vexed question because according to the Hep nurse most people kept their infection secret due to a perceived stigma associated with Hep C and its connection to drug use.

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 the disease a secret seemed problematic to me simply because I regularly had a glass of wine with friends in various social situations I would have to decline the 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 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 used intravenous drugs when I was 19 and 20. Really the truth is the simplest and easiest course.

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. The only real change 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 you had a bout 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.  Sofosbuvir had been approved for use in the USA and K had heard about trials being carried out in Sydney’s Saint Vincent’s Hospital to get it 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 it had not been approved by the PBS (Pharmaceutical Benefits Scheme) for a government subsidy that might make it affordable for the average person.

He suggested that I contact the doctor running the trial, 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 then 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 behavior that would 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 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 conducted in Melbourne. I figured I would have a better chance of getting on the Melbourne trials, being closer to where I lived.

The Trial Trials.

After a bit of Googling I tracked down some places that were running Hep C treatment trials in Melbourne and sent off some emails to their listed contact people. I waited 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 one response from a nurse in one of the hospital research centers. 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 Z 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. 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 Melbourne and went back to my mate K, who informed me that the team in Sydney was about to start another 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.

His secretary explained the process.

I would see him as a private patient for a private 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 airfare and the consultation, more than $500 total but worth it if I could get in on the trials.

My appointment was in the afternoon and I got there early, not having any other thing to do in Sydney. The good doctor was running a bit late from at meeting at one of the Universities and arrived at his rooms in bit of a rush. There was one person before me and then I went in. His secretary had scanned the documents I had brought with me, which he skimmed through then asked 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 tumors.

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. 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 for the PBS with a few months and that it was probable that it would become available later in 2015.

 

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 PBS.

He explained that, because of the high cost of the Sofosburvir, US$90,000 per treatment, the government would not be able to make Sofosbuvir available to everyone with Hep C. At $90,000 a treatment, with more than 250,000 people with Hep C in Australia that would cost over $200,000,000,000 ($200 billion)and bankrupt the health system.

The doctor told me that the government would only make 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.”

How it this different to someone being diagnosed with cancer then being told they could not get treatment until the cancer reached an advanced stage!

The doctor shrugged and agreed with me but said that it was going to be that way for Hepatitis C treatment 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. Bureaucrats and politicians!!! Always the quick fix rather than the long term solution.

So I flew back home the next day feeling rather 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.

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.

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 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.

 

Suddenly things were looking up.

Off to Google again to find out what was happening.

Patents and Power

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 and easily 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 fast and began giving Indian companies non-exclusive licences to manufacture Sofosbuvir. This 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. No-one knows how much but I guess it would probably be about one or two dollars per tablet. As India has over 12 million people with Hep C and if the average treatment used 100 tablets and GILEAD got just $2 for each tablet that would give GILEAD $2,400,000,000 clear profit just from sales in India.

These new licences would extend to 91 countries, basically all third world countries, but no first world countries. This meant GILEAD would access about one third of the Earth’s population through India’s cheaper versions of Sofosbuvir. Incidentally this is also the portion of the world’s population that has the highest Hep C infection rates.

The result of this is that the world’s Hep C sufferers are now divided into countries where the Hep C treatment would cost $90,000 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),

First world countries whose politicians and/or health and government bureaucrats had better negotiating skills 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 negotiators in the Australian Health Department.

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