Part of the story of how Hepatitis C survivor Greg Jefferys beat Hepatitis C using generic Sovaldi from India
A Hep C survivors story. 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 to get Hep C Treatment 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 honor 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 to buy some fruit and vegetable. In the car park, we bump into Z’s wife, who I have not seen for years.
She immediately wants to talk about Z’s Hepatitis C. She tells me that a mutual friend told her about our conversation at the Croquet Day and she and Z had been talking about the fact that I have Hep C and that I am going to India. 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 even though she and Z had been together more than 30 years 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 worry 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 cutbacks 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 authorized Rolex reseller.
We 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.
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 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.