My Hep C Treatment
Saturday: 23rd 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 marveled 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 can not 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 any more 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, its 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 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 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. Its 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 head aches 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 skeptical at the time but now the idea of a troll factory run by the big international drug companies does not seem too far fetched 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 to start a page just for the subject of obtaining Sofosbuvir on-line or by mail order so click the Link below to get info on 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 anemia can be a problem with Ribavirin and that my next blood test should be a full blood test, specially looking for anemia.
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?
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