Greg Jefferys Hepatitis C blog deals with all the issues associated with hepatitis C
Don’t expect anything much from me today. I have got the worst attack of Man Flu in recorded history. It turns out that you can not take Asprin with Ribavirin; it thins the blood too much, which explains why I spitting up globs of blood this morning. Next time check medication compatibility dummy.
I am answering emails, seeking sympathy and sleeping… that is it for today!
Well my little flu based rant yesterday annoyed a few folk, some of whom I did not mean to annoy; but I do confess that I can be an annoying person. I guess one should not write when under the weather… Oh well I did and I have to apologize for an inaccuracy, which I have corrected in the text from yesterday.
Hepatitis Australia has written to me pointing out that they did reply to a Facebook post I made on their Facebook page in May. They replied with quite a long email, which may or may not have been a “form” reply. When I did send them an actual email in reply Hepatitis Australia did not answer me. So I am sorry to Hep Australia, I guess I did not think of a Facebook post as an email, my error.
I got another serve from another Hepatitis C advocate who I have a lot of respect for. I responded in some detail about the reasons for my rant. I include an excerpt from that email below:
I have nothing but praise for your organisation and yourself however my comments were the result of a long ongoing conversation with a guy with Hep C in Canada who was actually given false information about bringing generic Sof/Rib from India into Canada by both of Canada’s main Hep C groups. He was told it was illegal, that it would breech Canada’s patent laws and that he would risk jail.
This guy is pretty tenacious and, after we talked about it, he did some
digging around. He contacted the relevant government bodies and was given
written assurance that he could bring the Indian generics into Canada, not by courier but only on his person and only with a prescription. He did further digging
around and found that one Hep C group received $20,000 p.a. from Gilead and
the other $10,000. I have no problem with people getting and needing funding however it should be transparent. It is the same in politics, people rarely donate to
political parties without expecting some favours in return. Some politicians
can resist the pressure for favours, others can not.
On a related but similar theme I have received a number of emails from
people (in Australia) who have approached their doctor for a prescription to
get the generics and have been told by their doctor that it is illegal. In
Australia this is so totally not true. Now I am not saying that the doctors
are lying, they are just misinformed. There is a lot of misinformation
floating around and a load of bad advice.
The realities are simple. Indian generic sof/rib treatment is safe,
affordable and reliable IF it is purchased from a reputable supplier and made by a licensed manufacturer. Advocacy groups should be aware of their particular country’s laws for importation of medicines for personal use and have an information sheet providing clear guidance on this. Not advocating that people should do it but making it clear for people who decide to follow that path. They
should also have an information sheet of Gilead licensed and FDA
approved manufacturers with contact details. Because there are rip off
merchants out there and desperate people are going try to get the meds that
will save their lives and if we can steer them away from the fraudsters and
toward reputable suppliers we are providing them a good service.
Even if Hep C advocacy groups do not feel that providing such information is in
their brief they should NOT be spreading false or misleading information and generating fear.
On that line I would like to add my own experience with ‘donations’ and politics.
Some years ago, when I had a lot more money than I have now, I donated cash to a local politician. He was a good man and I gave him the money because I liked him. I did not expect any favours… but I did get them. I was able to get meetings with government ministers who I could never have met otherwise. I had access to him more or less when ever I wanted. There was nothing illegal but if someone gives you money you will do them favours, they will have your ear. If they take you to lunch a few times a year, or pay for you to go to a convention in Europe you can bet they have got your ear. I mean no disrespect to anyone and I am sure most people in the Hep C world work with great dedication and have great convictions and ethics and could not be bought off by Big Pharma at any price.
1st of July 2015
It is kind of weird that it was exactly this time last year that my wife and I got the killer flu that was responsible for triggering the blooming of my dormant Hep C virus. Only a year ago… it seems longer.
So I was laying in bed wondering whether I should get up and just thinking about stuff. I was actually thinking about a guy who received his Myhep from India today, two days earlier than we had expected. I was thinking how I told him that I had gotten a pill box with the days of the week marked so I would know if I had forgotten to take my pills. Shit!!! Then I realised that I had not taken my evening dose of Ribavirin, which has to be taken with food. So that is then end of any hope of sleep and I am up at midnight eating Ribavirin and bananas… YUM (not).
This then brings me to a request a few people have asked me about; to outline exactly the treatment and how it effects my life.
The treatment is one tablet of Sofosbuvir and 6 tablets of Ribavirin. The Ribavirin is taken three tablets in the morning and three in the evening. Ribavirin must be taken with food.
Sofosbuvir can be taken with or without food and there was no particular time told to take it. I take mine at breakfast with the Ribavirin because then that is done and out of the way. I never forget the morning tablets but often forget the evening ones because evening meals often involve friends, or going out or some other distraction. Tonight is the first time I have actually gone to bed without taking them (I blame the pill box).
My wife usually asks me in the evening if I have taken my Ribavirins. If I have then I tell her that there is no need to remind me… If I have not remembered then I thank her and take them. But she has the flu tonight and was too tired to remind me.
So that is the treatment. I am now 6 weeks into it. Side effects? Not many, not significant.
Certainly my concentration is not good. I make about ten times more typing mistakes than normal (I’m an author so I do a LOT of typing).
I forget stuff all the time, like I will be sitting here and think of something I should write and forget it before I can start writing. I hunt around in my head for words I should know and can not find them. All in all not dramatic but annoying.
It’s midnight now, need I say more?
Grumpiness (or more scientifically known as irritability)
Yes I admit it, my normal shining and positive personality has become a cranky old grumble guts…. well it’s not that bad. I try to watch myself and I have said (and written) some things that I really should not have, however I don’t think it is a big issue. My wife has not left me and my cat still hangs around my ankles at dinner time.
Apart from that there is nothing else that I have noticed. I go up into the forest and cut firewood. I go up into the mountains and fish for trout. I take my friends river kayaking and shooting the rapids up the mighty Huon River. I answer emails I work on my books I work in the garden and drive my car and so on and so on. That’s my life nothing much has changed apart from the fact I have lots more energy than I did 6 weeks ago and I do not have to spend 2 or more hours sleeping through the day.
I am getting regular emails from people who have just done the trip to India and returned home with their medication. And there are quite a few others who I have helped organise to have their meds couriered in (in countries where that is legal). It is great to see this is happening. It is great to see that people are taking control of their health and not waiting around for health department officials to decide their fate.
Yuck!!! I should have had more than two bananas with those three Ribavirin last night. I could feel the tablets rattling around in my stomach all night. Oh well at least I woke up this morning feeling free of the flu… back to healthy me again.
2nd July 2015
A little bit on the side:
Countries that Definitely Allow the Importation of Medications for Personal Use
As I have mentioned previously I am in the process of building a data base explaining the rules of different countries regarding importation of Sofosbuvir for personal use. I all these cases listed below I have obtained direct rulings from the relevant government authority of the particular country. One reason for me doing this is to dispel the large amount of misinformation spread about this subject. Many people who are seeking medication alternatives, particularly generic HCV medication from India, are being given false or inaccurate information about their legal status.
Anyway here is the beginning of this here are the countries that definitely allow importation of medication for personal use.
Allows importation of 3 months supply on person or by courier. Prescription advised: Australia: Singapore: UK: New Zealand: USA: Poland: Venezuela: Lithuania.
Allows importation of 3 months supply on person but not by courier. Prescription needed. Canada: Ireland.
If you live in any country not mentioned here and can send me information about your country’s rules, with documentation, I would be most grateful.
For further details, exact documents and links to government websites please click this link to the page on my website.
Waiting for Generic Harvoni
A lot of people with Hep C Genotype 1 have been told to wait for the arrival of the generic version of the new Gilead Sofosbuvir combo known as Harvoni. This is more effective than the Sof/Rib combination for Genotype 1 a & b.
The generic Harvoni is reported to be coming out in India in late 2015, before Christmas. And we all hope it does, but it might not. From chatter on the Internet it seems that Gilead is working hard on a containment policy to make it difficult for people from countries that are not one of the 91 countries on its so-called access program.
A lot of people with G 1 have been through the hell of the Interferon based treatments and failed and are now tossing up about waiting for the Indian Harvoni or just getting on with the Sof/Rib treatment, which in a best case scenario appears to offer a 69% SVR. Not too bad but not as good as Harvoni’s reported 95% SVR.
So the question is to wait or not to wait? For some people the decision is made more pressing by the fact that their livers are getting attacked and their health is rapidly going down hill. Here is an excerpt from and interesting story along these lines I feel would be useful for some people.
The person referred to has Genotype 1b
I have a good news to share from a friend today. She has been on generic sofosbuvir plus ribavirin for 2 weeks, and her AST/ALT have dropped significantly from 276/312 to 86/129. Although this is not the best treatment option for her GT1b, her doctor wanted to bring her enzymes down first and add other DAA when it becomes available and affordable to her! So, we have to keep eyes open and get her the second DAA as soon as it is available.
(DAA stands for Direct Acting Antiviral)
This is a great example and I think she has a VERY sensible, even brilliant, doctor!
Because the consideration that a lot of people have is that they are very sick now, and cannot access Harvoni or any of the other new meds, and they may die or get very, very sick before the new medications arrive. I believe this approach outlined above will “buy them time” by taking the pressure off the liver for a few months, perhaps giving an SVR (at a better than 50% chance) but if not achieving SVR then at least reducing liver damage until generic Harvoni comes out. It is what I would do rather than just waiting and allowing the liver damage to progress. Of course I am not a doctor and everyone has to make their own minds up based on their own situation and the best advice that they can get.
If you want a copy of a PDF of the most up to date treatment options for Hepatitis C Genotype 1 published by Wolters Kluwer, just email me and I will send you a copy. Its free.
4th July 2015
Generally feeling fine as far at the treatment goes but feeling annoyed by some of the bureaucratic nonsense I am getting from some quarters, including Australia’s ‘peak’ Hep C advocacy group which is anti Indian generics for the same tired old and false reasons. Of course one wonders why a group supposedly dedicated to helping people with Hep C would be opposed to a safe, cheap and legal treatment that would cure most of the group it is supposed to be concerned for?
To stay in touch I keep a presence on a couple of Hep C Facebook forums, though I got so annoyed with the obviously biased administration of the largest group that I am no longer involved with that. The drug companies appear to have a permanent presence on most of the larger Hep C Facebook pages (as you would expect) and these people immediately attack any post that refers to using Indian generics whilst at the same time espousing the glorious humanitarian efforts of the big drug companies.
The only Hep C Facebook group that I am aware of, that is dedicated to bringing unbiased information about Hep C treatment options, is Hep C Treatment w/o Borders. The admin of this group have only one primary interest and that is spreading factual information about treatment options, particularly Indian generic Sofosbuvir.
When I started writing this record of my experiences with Hep C I never did intend to get into the politics of the international pharmaceutical trade however it now seems unavoidable because I get so many emails from so many people who are suffering, or watching a loved one suffer, because they cannot afford the treatment that would cure them. How can I not seek to understand what forces have created this situation where a cure is available to some and not to others simply on the choices of some board of directors on huge salaries sitting in the luxury of their well appointed office.
For example Gilead’s so called access program allows Indian manufacturers to supply 91 countries, chosen by Gilead. In Asia a person with Hep C in Indonesia and Vietnam can purchase the relatively cheap generic Sofosbuvir from India however a person with Hep C in the Philippines cannot. The person in the Philippines must pay the full US price. It is Buy or Die!
I have had emails from people in the Philippines in this situation, they have no health insurance and there is no free medical service there. The cost of treatment represents more than 10 years wages to many Philippinos. How can they afford to buy? Their frustration is so tragic, here is the cure but they can not afford it, many of them know that they will have a slow and long death, just because they are poor.
The great myth about Gilead’s “Access Program” is that it provides affordable medication to people in poor countries. Even this is a myth. For example in India the cost of month of Sof/Rib treatment is about US$350 (excluding the cost of medical supervisions) whereas the average monthly wage is US$290. So a three month treatment would cost four months’ wages. A six month treatment would cost eight months’ wages. Sofosbuvir is not cheap in India if you are an Indian on the average wage. If you are one of the 300 million Indians earning below the average wage the cost of treatment could be as much as four years wages. Obviously impossible to pay.
The average wage in the Philippines is about the same as the average wage in India, so why do Indians get access to cheaper generic Sofosbuvir and not the Philippinos? One would have to assume that is because the Philippines has such a close connection with the USA and the steady flow of people and packages between the two nations would threaten Gilead’s “Containment” policy. That’s my guess but there may be other reasons?
However one looks at it Gilead’s so called “Access Program” pricing is such that it allows access to the wealthier members of the Earth’s poorer nations but excludes even average wage earners in those countries, ignoring totally the poor. It can therefore be argued that the access program was not created as a humanitarian program but to create price points in different markets and to ensure that Gilead kept control of access to Sofosbuvir in those markets after India rejected its patent application.
How could I not get involved in the politics?
5th July 2015
A lot of people have been emailing me about buying Sofosbuvir online. Alarm bells have started going off for me these last few days because people have written saying things like: “I have just ordered three jars of Sofosbuvir from India and… ” or they write “I am about to order three bottles of Sofosbuvir online… ” or they write ” I am going to order Harvoni from India and I just wanted to ask you…”
Firstly: All genuine suppliers of generic Sofosbuvir in India automatically supply the Ribavirin FREE. If they charge extra for Ribavirin then they are ripping you off.
Secondly: Sofosbuvir alone is NO USE for treating any form of Hep C. Sofosbuvir must be taken with Ribavirin or some other drug such as one of the new DAAs (Direct Acting Antivirals). If someone offers to sell you Sofosbuvir alone then immediately stop dealing with them because they are scammers and do not know or care anything about you or the meds they are selling.
Thirdly: Generic Harvoni is NOT available in India or anywhere else at the moment, anyone claiming otherwise is scamming you. Generic Harvoni should be available in India by, or before, December 2015. That is assuming that Gilead does not block, or attempt to block, its availability. The same applies to generic versions of the various other new DAAs being launched on markets around the world.
Fourthly: If you are buying the Sofosbuvir and Ribavirin treatment then you should not be paying more than US$1,500 for a three month treatment delivered by courier direct to your door anywhere in the world. That includes the Sofosbuvir & Ribavirin inclusive. If you are paying more than that you are being ripped off.
For more information on buying Hep C medication from India please email me and I will send you some information sheets and links to further information.
Greg Jefferys’ blog is provided for informational purposes and is not intended as Medical advice, diagnosis, or treatment.
Whilst Greg Jefferys is doing a PhD it is not in medicine. Any advice offered is offered in good faith and based on an extensive general knowledge of Hepatitis C and access to generic Hepatitis medicines Greg Jefferys has acquired through his work as an advocate and activist
The Hep C Buyers Club is not a company or corporate entity but simply a loose structure intended to offer a free information to people with Hepatitis C
Click here for other books by Greg Jefferys.
I have converted this diary into a kindle book for folk who might like it in that format. I have added a lot more depth than the original diary contains, it’s more of a complete story in book format. I have priced it as low as Kindle allows me to @ 99 cents. If you are interested just click here to go to the Kindle page.
If you have any questions please reach out by email, or complete the below form.Greg Jefferys
3439 Channel Highway, Woodbridge, Tasmania, 7161.