Greg Jefferys Hep C Blog
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. Sofosburvir 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 behaviour 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 centres. She appologised 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 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 air fare 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.
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 Sofosburvir. Incidently 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 Health Department.
So I started to research how one got the 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.
The problem is that an Australia doctor can not write the prescription.
I looked at various options including buying it on-line but it soon became clear that the easiest, fastest, safest way to get my Sofosbuvir was to go to India.
Buying drugs on-line is full of risks and a mine field of scams
I tried to find out if anyone had done with before, they probably had, but I could not find any information, hence the reason I am writing this.
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 and make it more difficult, or even impossible, for anyone to get cheap Sofosbuvir out of India and into first world countries. So I moved as fast as I could and booked a flight to Chennai.
Now here I will be totally honest. The trip will end up costing me around $3,000+. I have paid for that with my credit card because I do not have that kind of money hanging around. A couple of friends also helped me out a bit (thanks again).
But what are the alternative options???
Like most people I could not afford the $90,000 for the treatment. I now 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 get sick enough to get treatment? Or do I go to India and (hopefully) get it sorted that way? It seemed like a no brainer to me.
My symptoms were definitely getting worse. My concentration and mental abilities were showing signs of being effected. 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. But I was a long way off being at the level of sickness needed to get government treatment, and I knew that there were lots of people 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 hepatitis cC treatment and that it works for you. For those of you who can not get treatment through conventional channels, I hope this story will prove helpful for you!
We are attending the annual croquet day, a day of silly hats, serious croquet and much merriment ( and wine). I bump into a friend I have not seen for a while. He notices I am not drinking and I do the tell/explain thing. He knows about Hep C and tells me a mutal 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.
We went up to Byron Bay to stay with my mother and sister and brother-in-law for ten days 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 somehow 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 flight back to Tasmania is long and tiring and 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.
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 never shot up drugs. She gave me the impression that she thought the less of me for having been a drug user 40 years ago, but that might just have been 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 Hep C 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? It happens often enough.
I went to my GP today to get a final blood test and have a chat. He was very supportive and reaffirmed how important 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 India and also its African neighbors. 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 stop supplying the cheap drugs. Then pressure was put on 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 the Clinic had no access to the cheap Indian drugs and people started dieing again.
According to my GP thousands and thousands of people died before pressure from powerful individuals and organisations reversed the process and the India generics were allowed back into Africa.
By strange coincidence, again, as I was walking to the doctor’s surgery for 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 four times in the last seven years.
I had been thinking about Z as I drove in, thinking about his situation and I mentioned this to her. I told her I would be happy to bring back an extra treatment pack for Z if I could but she told me that he had seen the doctor last week and 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.
A week until I leave for India. Jan and I worrying a bit about whether we had made the right decision as the fare and other costs will have eaten most of our savings. I’ve only booked to stay a week there and we worry about if that will be enough time to find the right doctor, the right pharmacist and get the script. I guess it's buyers’ 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. At least, thanks to the Indian government having enough balls to stand up to the Big 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’s certainly the opposite of what I heard.
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. I find it interesting that so many people are scared or ashamed to admit that they have Hep C. 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 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 and that I have to be certain I clean it up. She uses bleach on my handkerchiefs.
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. Glad I am booked 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 dropshipmd.com. This is a company based in Mumbai that sells all of India's generic Sofosbuvir drugs, mostly those licenced 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 price. Even at US$1,500 its 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 I have received information that dropshipmd.com is not to be considered a reliable supplier and I do not recommend them. Because I have received emails from many people in countries where the income is such that they can not afford the trip to India, but could afford to purchase the Sofosbuvir by mail order, I am trying very hard to identify a reliable and trustworthy mail order supplier. I am advised that they do exist and should have more details soon. I will post when I have this issue resolved)
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 about 300,000 people with Hep C in Australia 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 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 companies manufacturing it there and organise it to be shipped direct to each individual person with Hep C. Apart from the savings to the Australian health system it would also very quickly end the suffering of 300,000 people now suffering the effects of Hep C.
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 what ever 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 there is a good effective drug that would cure me but its so expensive that I can not afford it. So I hope this helps folk.
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 tens of thousands of Australian lives by standing up the the big pharmacuedical companies, not a peek from our Prime Minister, not a word.
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 in KL and then on to Chennai for a midnight arrival. Not at all worried about a plane crash but as I drift 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 can not get an appointment within the time I have?
What if they do not accept the Australian test results and want to do their own?
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.
Got out of the Chennai Airport at about 2 a.m. after having a panic that my luggage had been lost I realised I was waiting at the wrong baggage point and found my bag all alone going around and around on the baggage conveyor belt.
Walking out of the airport building into the thick perfume of India, some things never change. Traffic jams, piles of rubble, half finished eight land highways, people sleeping on the broken pavement. So familiar, so foreign.
Got to the hotel without to much fuss and found my room quite good for what I need. Woke up at six this morning and went for a walk around my new neighbourhood.
There are a few doctors and chemists on the block but I must wait until about 10 before anything opens. I might get a shave before I go and see the Doc.
What a day!
First I got an email from G. who runs a Hep C support group in Thailand. He told me to 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.
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, got a took-took and headed off. Of course on the way out I start worrying: "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.
So I arrive at the home of S and am brought inside and welcomed. S looks wasted. He explains that he 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 kept his job.
He explained that the doctor he was seeing was a gastroenterologist with one of the large hospitals in Chennai 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 Sovadli.
I felt very comfortable with S and forgot about all my worrying.
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. 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.
I will not describe the process of getting through the paperwork at the hospital and finally ending up in the Doctor's waiting room other than to say that I was definitely the only white guy in town and that asking Indians for directions through a labyrinth of hospital corridors always gets the same answer: "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." Indians will not usually give you complicated directions like that 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."
Anyway after a couple of hours I ended up in the waiting room 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 to see the doctor. All very good natured of course. I got several handshakes, offers of food and "Where are you from sir?" On the discovery that I was from Australia cricket and all things and people associated with cricket became the conversation.
I became the "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 that I was on the verge of learning to speak Hindi 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 until after I was gone back to Australia then it was all very unfortunate.
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. Fortunately I had a great wad of paper that I had sorted through and organised during the long hours in the waiting room.
As it turned out I had everything he needed in the test 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 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 his was cleaned up in 12 weeks also.
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 it to treat the most sick. He said that in India they had started that way with 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.
It seems pretty obvious to everyone I speak to!
So tomorrow I 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 email the supplier tomorrow and find out. I am expecting them 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 cirrohsis 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.
Its 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 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 then 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 perscription? 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 #################
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 Remmitance 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 because there was no request for a prescription:
Thanks for the email. I would be cautious because all my advice is that it illegal to sell any of the generic Sofosbuvir brands (in India) without a prescription from a medical doctor. Further it is illegal to import them 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 English had their main base in Madras for the couple of hundred years that they ruled here. It was at Fort Saint George and 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.
Please Note: 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