Greg Jefferys Hepatitis C blog deals with all the issues associated with hepatitis C
Because of a discussion that came up in our group today, I would like to clarify my position on the NVHR (National Viral Hepatitis Roundtable) a USA based organisation.
Firstly, I want to make clear that I am not trying to pick a fight with the NVHR and I am sure that there are good people in the NVHR who are genuinely trying to help people with viral Hepatitis however here I must quote Jesus, Matthew 6 v 24:
“No one can serve two masters. Either you will hate the one and love the other, or you will be devoted to the one and despise the other. You cannot serve both God and money.”
Over the years I have written to the NVHR to ask them to make people aware that the GILEAD licensed generic Hepatitis C medications made in India are a cheap and effective option for people in the USA without health insurance or whose health insurance has declined Hepatitis C treatment.
I have written to the NVHR several times about the option of people accessing Hepatitis C treatment using Indian generic DAAs but they have never replied to me. Here is an example of one email to the NVHR, another example is at the bottom of the page.
Thanks for sharing this.
I would like to make the comment that your organisation would help a lot more people if it increased awareness of the option of buying GILEAD licensed generic treatments for individuals with Hepatitis C.
Given that the major obstacle to accessing treatment is the high cost of “brand” DAAs in the USA if people were aware that they could legally buy licensed generic DAAs from outside the USA for around US$500 for a 12 week treatment that would see a LOT more people getting treatment.
It seems very strange that your organisation completely ignores this option.
The reason that the NVHR are not interested in telling people about the generic Hepatitis C treatment option, the reason that they will not talk with me, is simply because the NVHR is mostly sponsored by Big Pharma + Big Pathology.
As you see from the page on the NVHR website copied below the bulk of the NVHR funding comes from Big Pharma. Their pay packets come from Big Pharma.
Like the World Hepatitis Alliance (Also 100% sponsored by Big Pharma) the NVHR does not work first and foremost for the best outcomes for people with Hepatitis C, this is secondary.
The NVHR works for the best outcomes for Big Pharma and if some people with Hepatitis C get a benefit in the process, well that’s a secondary benefit. When the choice is between what is best for people with Hep C and what is best for Big Pharma, Big Pharma always wins.
Big Pharma uses groups like the WHA and the NVHR as lobbyists to advocate governments for increased funding for Hep C Medications, not cheaper Hep C medications. When governments divert limited health funding to paying the huge prices for Mavyret, Epclusa and Harvoni funding is removed from areas of health that do not have highly funded lobby groups, for example from Emergency or Maternity services.
Health budgets around the world are always under stress; when funds are diverted to buying overpriced Hep C medication then the rest of the health budget is depleted.
I am sure that there are good people in the NVHR who do good things and who are trying to help people with Hep C however the reality is that Big Pharma pays the wages and therefore dictates the policies.
The fact that there is no mention, advice or guidance on the subject of cheap generic Hepatitis C medication from India on the NVHR’s website or its literature is the most obvious evidence that Big Pharma pulls the strings at the NVHR.
Simply by putting up information about generic Hep C medication, with links to reliable suppliers and maybe some links to peer-reviewed articles about Hep C generics in science journals.
The NVHR does not tell people about the cheap generic treatment options for Hep C but funnels eligible people into government-funded programs that ensure that Big Pharma gets its Big Money.
It is smoke and mirrors and a very classic deception using proxies masquerading as charitable organisations but who are actually pawns of Big Pharma.
This sad deception is practiced across the entire world and is one of the many ways that Big Pharma keeps control of the Hep C market.
I wrote the letter below to the NVHR explaining my position of Hepatitis C medication and putting it to them that, if they are genuinely concerned about helping people in the USA to access Hepatitis C treatment then they should also include information about the option of getting generic Hepatitis C medicine from India.
Another email that the NVHR never replied to:
Thanks for taking the time to answer my questions so comprehensively.
Whilst my concerns are of a global nature at least half of the inquiries I get about generic Hep C treatments come from the USA, so I have an intimate understanding of the angst and suffering that many people in the USA go through trying to access Hep C treatment.
There are many levels to this, some are people who have Health Insurance but are not granted access to treatment because access is triaged.
Others have health insurance that does not cover Hep C treatment.
Others have no insurance.
My position is that increasing awareness about access to generic treatment solves many problems. Firstly, for most people, there is an affordable generic option. For example a 12 week treatment with Sofosbuvir + Daclatasvir costs only US$550 and if a person indicates that they have financial hardship I will reduce that price to below my cost and sell for US$360, which most people can afford.
Secondly if more people begin accessing generic treatment it puts massive pressure on the big pharmaceutical companies to reduce their prices.
In Australia we brought the effective price per treatment charged by Gilead for Harvoni down to around US$6,000. This was the result of a massive media campaign creating awareness of generic Hep C treatments.
In Italy the national health service there pays less than $10,000 per treatment because generics were flooding into Italy.
So whilst the work your group is doing is great it is my belief that it is only when Big Pharma is threatened by genuine competition from generic medicines priced at a level that actually reflects the cost of the product that things will change.
As you may know, a treatment of 12 weeks of Harvoni costs less than $40 to manufacture, including packaging etc. So Gilead could sell Harvoni at $2,000 and still make a great profit.
It is my hope to see a 12 weeks treatment with Sof + Dac or some other DAA combination retailing all around the world for under $300 within the next 12 months. Indeed all my energy is focused on that outcome.
Only then will we see Big Pharma come to the table with realistic prices that will allow all health insurance companies in the USA to give treatment to all their clients.
National Viral Hepatitis Roundtable
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
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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.
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Man Greg! I love how ou are so aware of the govt beurocracies! I praise your efforts and sing them from every mountaintop in the USA. The main deception from Big Pharma is keep us dumb and uninformed of our human rights!
One question I have is, why would Gilead even sell their intellectual rights to India in the first place? Does India manufacture generic and brand Harvoni/Epclusa? What is the point? Im thinking that India may have many cases of Hep C, and Gilead wants to tap into Indias market to make a profit off of less expensive drugs, as opposed to the USA where many people have private insurance that are willing to pay 90K for one round of treatment? Im so glad Italy was flooded by generics. Thats what every country needs to do. Even at 2k per treatment, they make a huge profit! No wonder our private health insurance premiums are so high! I battle very similar issues with dialysis and For-profit transplant hospitals. I find it absurdly comical in an insanely disgusting way, that the same nephrologist that work for the hospitals, also work for Fresenius and Da Vita. So no wonder why there is no incentive to help patients get transplanted! 12x Monthly dialysis treatments
is big money! As opposed to a 1x kidney transplant that cost a total of 30K US dollars. Interesting how Medicare covers the cost of 80% of dialysis, and is regulated by the state and Centers for Medicaid/Medicare Services. Dialysis companies love patients that have private insurance! Thats why I dropped my private plan a year after I got on dialysis. Now I am on Medicare and Medicaid. Of which contracts and negotiates a $6500. dialysis treatment down to $450. per treatment. Still, the for profit dialysis companies still make a killing off of all of the patients in North America. Since our healthcare system is so fucked up!. Dialysis is 12% of the entire yearly Medicare budget and near %5 of the annual GDP! And it doesn’t have to be! Dialysis is so high risk of death and co morbidities for people as opposed to a normal life or being transplanted with a kidney! The longer a person is on dialysis, the less of a chance they have for getting a transplant. Everything is a caveat to a solution. It’s the dumbest thing ever! Thats why people at private hospitals in high population states are waiting 12-15 years on dialysis. And patients in other states wait 2-4 years for a kidney transplant. Its all baed on bureaucracy of the hospitals where the patient is registered and tested at, and if that hospital chooses to transplant that patient or not. If that organ matches. Of course dialysis companies keep their patients so uninformed about all of this pertinent information. I share this with you because you are one of the bright few people not afraid to tell the truth. You speak out, and ethically and morally, that is the right thing to do!.. Like you said, you cant worship 2 Gods. God or money.
Thanks for your comments.
The reason that GILEAD negotiated a deal with India pharmaceutical companies was because the Indian government did not recognize the patent for Sofosbuvir. Indeed Gilead’s patent was challenged in lots of places but because India has a vibrant and very competent pharmaceutical manufacturing industry it was a big problem for GILEAD. It meant that Indian companies could make Sofosbuvir and sell ti anywhere.
So GILEAD made a deal where they supplied all the technology in exchange for a royalty.
But after that agreement was made GILEAD used its power to corrupt the Indian officials in charge of the patent office and won an appeal against the patent decision. They got the patent granted after all but the licensing agreements were already in place and could not be reversed