Greg Jefferys Hepatitis C blog deals with all the issues associated with hepatitis C
I apologise that my last few posts have been rather negative, perhaps tinged with anger, because of my frustration with the greed and corruption in the international pharmaceutical industry and the suffering this causes.
However I try to never forget that there is also much good happening and many good people trying hard to change things.
I am a member of the Facebook group Hepatitis C Treatment w/o Boarders and every day there are posts from people who have been cured by generic Hep C meds.
Today I read this great post from a person in the USA who was recently cleared of Hep C. It is worth sharing, though please note I have changed a couple of details so that the person’s privacy and identity are protected.
There are a few good things in this story. A good doctor, a cure and news that the easy access to generic Hep C treatment is putting downward pressure on Gilead’s prices and forcing them to do deals with the health insurance companies.
I saw my liver specialist today. He practices at the Liver Department of a big hospital in San Francisco. He’s a nice guy, and when I told him a couple of months ago that I was going to treat with generic Harvoni from India he agreed to monitor me.
Today I brought him the empty cardboard packet of Hepcinat LP so he could see what I had taken. I gave it to him to keep. He was thrilled to receive it. Better than a Christmas present it seemed. He couldn’t wait to show it to his colleagues in the department.
He told me how shocking the amount of money Gilead is making is, and that even if they appear to make ‘deals’ with the insurers, the costs still get passed along to us insured in the form of higher premiums.
I told him I had a few friends die from Hep C, and he told me he had seen hundreds of people die from it. In his profession that must be so. It must have made him sad and then angry that he couldn’t help more of his patients when the drugs became available.
I pointed him to the Fixhepc website and told him to Goggle greg jefferys
I guess the biggest shock of the day for me was that it sounds as if insurance companies may now be willing to pay for the drugs in the US for more Hep C patients. Perhaps this is in the pipeline.
I paid $900 for the generic Harvoni and at 4 weeks was undetected. I’m going on to do 12 weeks (though initially the doc said to do 8), but he said if I have the meds anyway doing 12 would increase my chances of being cured. And good news, because I have very very little damage to my liver I can have a glass of wine every now and then with my dinner even while on treatment. Yummy!
I feel very fortunate in many ways. Not knowing I was ill when there was no cure. Only finding out when there was a cure, not having much liver damage, and getting the treatment. I suppose however looking back on it I was pretty exhausted for many years, but attributed it to my work, and then caring for my 90 year old mom till she passed away. Don’t know if I’ll have more energy or not in the future, but at least I will not have Hep C
4th September 2016
Corruption and Conflicts of Interest
7th September 2016
Conflicts of Interest and Corruption
In Australia right now there is a lot of news coverage about some politicians who were getting payments from property developers through a fake “not for profit” organisation. One politician was getting payments from a Chinese company with close ties with the Chinese government. Some of these politicians are facing criminal charges because we all know that property developers only give money to politicians to gain favours.
The politician, a Senator in the Australian Senate, was known for actively campaigning for Chinese interests and even supporting the position of the Chinese government on contentious international matters.
That Senator resigned yesterday when these things became public. Of course he resigned before he was fired.
Jail or dismissal is the correct response to corrupt behaviour because everyone knows that money buys influence, and that influence is used to get decisions that favour the organisation that gives the money. It is as simple as that.
This simple principle applies to politicians, police, customs officials, doctors and professors and other people who have influence. These payments are bribes, nothing is more obvious. It is the elephant in the room that no-one want to talk about when it comes to access to generic Hepatitis C treatment.
But we are not be surprised to know that Big Pharma buys favour with politicians through campaign donations and such. But it is more disturbing to read that they also buy doctors through various “donations” and “grants” and other fronts such as paying for traveling expenses to “conferences” and so forth.
The subject of conflicts of interest and outright corruption has been a general theme of my writing for some months and in the last few weeks I have had a bit of a rant about Hep C advocacy groups who receive funding from Big Pharma, a subject I will return to in another post.
Right now I would like to talk again about corruption in the medical Establishment, where Big Pharma buys the loyalty, the silence or the support of doctors and professors. The article above only touches the tip of the iceberg.
When I first started agitating for greater access to and awareness of generic Hep C treatment I received a phone call from one of Australia’s leading liver specialists. She had seen a television program about what I was doing and rang me to explain why there was so much resistance to generics, even though all the liver doctors in Australia knew that they worked.
She explained that all the big research hospitals and universities, all the professors and specialists, relied on grants from Big Pharma for their research work. She herself had received about million in research grants over the last few years and she stated quite clearly that she would be reluctant to offer public support for generic Hep C treatment because doing so might seriously jeopardize her access to research grants in the future.
Then there are the “Conferences”.
Every year Big Pharma gives away tens of millions of dollars to pay the traveling expenses and accommodation expenses of most of the world’s top liver specialists.
Is it not surprising that these “conferences” are in exotic tourist locations around the world, where the doctors and professors stay in the best hotels and may or may not attend the occasional conference presentation but certainly will eat out at great restaurants and go to great shows and so on.
How many such “all expenses paid” jaunts does it take to to buy a Professor? Tie it in with a research grant and a few “gifts”… Well one or two a year would be enough, especially if we can travel business class!
So is it any wonder that all the specialists and the head doctors in the liver hospitals in Europe and the Americas all do their best to block access to generics?
It is no surprise at all. Big Pharma has bought them body and soul.
It is such a shame!
8th September 2016
What Sweden and the Ukraine have in common
Sweden and the Ukraine have not much in common, one is a poor ex-Soviet nation struggling with getting democracy working properly the other is a wealthy western nation with a long history of democracy.
However both government block access to generic Hepatitis C treatment to their citizens who have Hep C and who can not access treatment through their nation’s health system.
In the Ukraine it is simply that the government health system can in no way afford to pay for the patented Gilead treatment. At $85,000 that is about ten years wages for the average Ukrainian citizen.
Even in Sweden the government can not afford the cost of the branded Hep C medicines and so in Sweden the treatment is triaged so that people with a fibrosis score of F2 or above can access treatment. This is a lot better deal than most people get from their governments however if you are F1 do you really want to live four or five or ten years with the Hep C virus in your body, waiting for the virus to do further damage to your liver?
Of course not! It is insane to tell a person:
“”You have Hepatitis C, your blood is dangerous, you could infect someone in your family. We could treat you but we won’t and also we will block you accessing any affordable treatment options.”
So who would want to wait. Not me and not the lady who wrote this letter below.
She is now SVR 12. It is a great story of a person who took responsibility for their own health and pushed through the blocks that her government put in the way of her regaining her health.
A fantastic story.
This is my story. My spelling sometimes is wrong so you are welcome to correct. Please don’t show my real name.
It all started when a few years ago I began to experience a terrible stomach pain, so I went to my doctor who did some blood tests. Then a week later got my results back by a letter they sent me.
When I opened letter and read it I felt like I was punched in the stomach.
In the letter Doctor notified me that I have Hepatitis C.
Then an incredible fear took over my mind. It felt like my life was over. I thought my husband will leave me and I would get fired from work and nobody will want anything to do with me.
It was one of darkest days of my life. I felt untouchable, unclean …. But when I told my husband and my extended family they were all very kind and supportive. It was such a huge relief!
So we went to a liver specialist and did the tests and he told me that I have fibrosis between stage one and two.
I live in Sweden and few years ago they only treated people with stage three fibrosis (but now they offer treatment for stage two as well). But because I was not yet stage 2 fibrosis I wasn’t sick enough to get treatment. And because I live healthy lifestyle it may have taken years before I could get treatment. It was very hard to hear that I did not qualify for treatment because I did not want to live with this disease inside me with the continual risk of infecting those that I love.
And I did not want to wait years to get cured.
And I could not afford to buy the medicines myself because the cost was nearly one million Swedish Krona; an impossible amount of money. Then I heard that my mother also started having some health issues so I suggested to her that she should get tested for Hep C as well. Her diagnosis turned out to be worst than mine. She had stage four fibrosis and at the beginning stage of cirrhosis. She felt extremely tired and sick. Because she lives in Ukraine she had no chance for any kind of treatment. I wanted to find out the way to help her.
I’ve read many articles and blogs about available treatment and came upon Greg Jefferys’ blog. I emailed Greg and asked many questions and decided to order generic medicines for my mom from Australia and for myself from India. Greg was fantastic helping every way possible. Medicine was send to Bulgaria because Sweden and Ukraine do not allow the importation of medicine by mail specially from non EU countries. So we asked a relative in Bulgaria to help us and they agreed so we organised this and I went down to Bulgaria up and picked up our medicines and my mother and I started our treatment together. I am happy to report that now eight months later my mother and I are both free from Hep C. My gratitude to Greg and all the people who work to help people to access generic medication is endless. Without their help I would have lost my mom and big part of my own health. I want to thank all of you from the bottom of my heart for doing God’s work to keep people alive and healthy. Best wishes.
9th September 2016
APIs SVRs and What Needs To Be Done
One of the highlights of my day is when I get emails from people who I have not heard from for a while and who take the time to write to me and let me know how they are going with their treatment.
Below is an email I got today from a lady in the UK who I exchanged a lot of emails with and who eventually decided to buy the API’s from Mesochem and make up her meds herself into capsules.
A lot of people still do this because it is the cheapest way of buying generic Hep C treatments and, from all the evidence I have, is just as effective as any other form of treatment. That is to say that APIs have the same cure rate as branded Harvoni and the same cure rate as licensed generics and they are about a third the price of the tablet generic meds.
So a full 12 weeks treatment with Mesochem APIs will cost you about US$400 including shipping.
Of course you have to be confident about putting the APIs into capsules however I have never heard of anyone going down that path who did not get cured. Who knows maybe self encapsulated APIs are actually better than any other treatment???
Anyway here is the email
Firstly let me say how much your work is appreciated.
I am one of those who you steered in the right direction (to Mesochem) and as a result I am now SVR12, thank you.
You may feel like the work that needs to be done is a bottomless pit (and it is) but be assured that to every person who becomes SVR 12, you’ve given them their life back, which is better than the crown jewels.
I am in the UK and recently had discussions with my hospital’s Hep C consultant who didn’t monitor my treatment.
Despite that he’s a good guy and his team is good too, but their hands are tied by the NHS bureaucracy . I suggested to them the following 2 things:-
1. Set up a national test centre for everybody to bring their self-bought drugs for testing. That way the doctor and patient are covered for bad drugs – which seems to be the doctor’s biggest fear.
2. Produce a transparent policy for monitoring people taking generics so that the patient does not have to fear getting a negative reaction from their doctor, or putting him/her in a compromising situation.
These suggestions were largely agreed with by the people in the hospital but again the doctors are powerless to follow through on them, again because of the NHS bureaucracy.
They asked me to go to my member of parliament and suggest these things to him but I’ve already been there once already.
In addition, you may have heard that there is a drug in the HIV community which prevents people catching HIV. My doctor was all concerned about how the administration of this drug is going to be monitored. The logistics are huge.
The HIV lobby is so much more vocal than the HCV community.
I just wanted to tell you that this issue is putting the NHS monitoring services front and centre in the UK at the moment and perhaps there is an opportunity in it for HCV people.
All my best wishes,
The points that this lady brings up are important and the one that stands out for me is how the HIV community is so vocal and so effective at lobbying and getting things pushed through the bureaucracy and red tape and the HVC community is not so united and effective.
In my mind there are a few reasons for this. First and foremost is the fact that many of the major Hep C lobby groups are funded and/or manipulated by Big Pharma and its agents.
So rather than pushing for the obvious game changer, that is full access to affordable generic treatment, these advocacy groups pussy foot around and push for the governments to fund Big Pharma’s products.
Of course there is not a government Health Service on Earth that could fully fund a fair and accessible Hep C treatment at the prices Gilead and that lot of vultures want. This results in access being triaged and people having to wait years to become sick enough to qualify for treatment.
The other reason the the HIV community is more vocal and effective is that it has had a number of high profile, celebrity supporters, patrons if you like.
Think Princess Diana for a starter. All these high profile HIV supporters both lifted public awareness of the issues around access to treatment for people with HIV and also lifted the stigma that was previously associated with the disease.
Where are the high profile, celebrity supporters of Hep C?
Well I can’t think of any at all!
Of course there are plenty of celebrities who have had Hep C but they have all quietly gone and got themselves treated and cured… or died quietly without admitting that they had Hep C.
So this is one of the things that the Hep C community lacks a few celebrities with the courage to stand up and say;
“”I had Hepatitis C and I am cured because I could afford the medicines but there are hundreds of millions of people who can not afford the medicines and they need to be helped!””
Sadly most celebrities are selfish twats who lack both the courage and the moral fibre to do anything unless their is something in it for themselves.
So really all we Hepsters can do is put pressure on the people who run our so-called advocacy groups to represent the best interests of the people with Hep C rather than the best interests of Big Pharma.
15th September 2016
Bangladesh and Blocking Big Pharma’s Big Moves
A couple of days ago I had a really interesting meeting with a medical person who has his finger on the pulse of the international Hep C medication scene.
We talked about a lot of stuff including Gliead’s ‘new’ pan genotype Hep C drug Epclusa, the combination of Sofosbuvir and Velpatasvir. He explained to me that there was no evidence to suggest that Epclusa was any more effective than the combination of Sofosbuvir and Daclatasvir, a fact that had been put to me from several other sources over the past couple of weeks.
Epclusa seems to be just another attempt by Gilead to squeeze as much money as it can out of the world’s health systems and health insurance companies. The one thing Gilead is good at (apart from buying patents and putting prices up and up) is marketing. The amount of hype Gilead was able to generate around Harvoni was amazing and even though Harvoni was no more effective than Sofosbuvir + Daclatasvir for treating genotype 1 everyone wanted Harvoni even though it had the disadvantage of being less effective against other genotypes of Hep C.
One of the other things that came up in this conversation was that Gilead is planning to close down the export of generics out of India. Now this came as a little bit of a surprise to me because I had thought that Gilead had more or less decided to leave India alone.
My thinking was that Gilead was making enough money out of royalties from the companies that had signed up on its licensing agreements that it would let it ride in India.
Not so my informant told me. According to this person Gilead is making only about US$40 million per year out of Indian royalties, not even chicken feed for a company the size of Gilead.
According to my source Gilead is even now gathering its minions for a big effort to close down, or significantly reduce, the export of generic Hep C meds from India.
I hope my source is wrong however if he is right then there is still the fall back position to Bangladesh where we have two good pharmaceutical companies making generic Harvoni and Sofosbuvir and Daclatasvir (Darvoni).
If Big Pharma closes down India then Bangladesh will fill the vacuum.
Below is an email I received yesterday from a US citizen with Hep C who had been living in Thailand.
This person had failed Interferon treatment and contacted me early this year about options from accessing generic Hep C meds in Thailand.
After quite a few emails he decided to fly to Bangladesh and buy a 12 week treatment of Twinvir from Incepta.
After finishing treatment in Thailand he returned to the USA.
Here is his story:
Just a brief update
Moved back to san Francisco bay area, where i had originally gone thru the failed interferon treatment for the hepC, about 11 yrs ago. I was able to pick up medical coverage with the same medical group again. The ones who treated me with Interferon, so i could get some continuity of care after my 8 yrs in Thailand.
So i get my appointment with the same liver specialist and show him all my paperwork from Thailand (which showed virus undetected at end of 24 weeks of tx with generic harvoni).
He was skeptical to say the least. Plenty of eye rolling and such, like the USA has the only doctors on Earth who know about Hep C.
Since it was time for my SVR 12 tests, he decided to run the viral load again and full liver panels and compared all the way back to before i had initial failed tx with interferon way back in 2005.
WOW… to say he was surprised is an understatement. He had listened to my story of journeying to Bangladesh and purchase of Twinvir with a bit of skepticism, to say the least. But when i came back undetected at SVR 12 and my liver functions are “greatly improved” he tipped his hat to the world of generic HepC meds. A small victory, but we’ll take them wherever we can get them..
anyways… glad to be free still at SVR 12 and look forward to SVR 24.. thanks again for all your support!
This story is interesting because the initial attitude of the USA doctor highlights the endemic racist view that is common in Western countries that doctors in Asia do not have a clue and also that generic meds are a cons.
However this doctor is good enough to admit that the results are the true gauge of what is real and in the end he admits that the generic path is a valid one.
In the USA many more doctors are happy to prescribe generics and monitor patients doing the generic treatment path. There is still a long way to go but things are changing and the more people who do generics then the more doctors will see the results and that will produce the changes.
20th September 2016
Good News and Bad News from Greece
I received this wonderful email below from a lady I helped to get generic Sofosbuvir and Daclatasvir for in December last year.
She was actually the first person in Greece who I helped to get generic Hep C medicines for.
I called this post good news and bad news because it holds the wonderful news that she is SVR 24 but also it reaffirms this arrogant opposition to generic treatment that so many doctors have.
Here is a woman who is desparate for treatment. Who wisely refuses the Interferon and Ribavirin treatment, who takes control of her health, cures herself and is treated with scorn by her doctor.
There is a whole lot of evidence now published showing that generic DAAs are just as effective as the expensive brand versions. Every day I get several emails from people writing to tell me that they are SVR 12 or SVR 24.
Really why do doctors have this attitude? I thought it was all about helping the patient achieve wellness?
Anyway despite her doctor Sophia is well again and hope you enjoy reading her story
Sent: Tuesday, September 20, 2016 7:13 AM
To: greg jefferys
Subject: Re: Sof Dac
(I have changed this person’s name for privacy reasons)
Hi, it’s Sophia from Greece! I’ve been meaning to write for some time now, but something would always come up!
First of all I began my treatment of Sofosbvuir and Daclatasvir in December just before Christmas and I had my first blood tests done on February 15, which was half way into treatment, which was the earliest I could get to see my doctor.
I didn’t tell her I was taking generic Sofosbuvir and Daclatasvir because she was totally against the idea of taking generics and said they were probably poison that would probably make my Hepatitis worse and lead me to cirrhosis. Instead she wanted to put me on Interferon + Riba and said I had no other options!
So, a couple of weeks after she took the blood I went to see her for my test results and she had someone send me away and told me that she was too busy to see me and she wouldn’t have an opening for an appointment until May!!!!!
I was EXTREMELY FURIOUS!!! I couldn’t get my test results and I would have to wait for another 2 months to get them!!!
I could have gone to a private lab and done the test again, but it was way too expensive and I couldn’t afford it!
So I waited…and waited…. and waited until my appointment came in May! My treatment by the way ended in March and I had NO IDEA what the results were….was I clear? Was I still sick? Was I worse? Of course I would think of the worse case scenario….actually I became so depressed, I thought I was dying!!!!
When finally my appointment came up, I rushed in the doctor’s room and asked her for my test results and she looked at me with the weirdest look and asked me if I took any kind of treatment…..
But I said no (because she was so against generics), and I asked “Why?”
Then she answered “Because the virus was non detected!!!”
I was beside myself with joy but I kept it concealed.
I asked ” Are you sure????”
She shrugged her shoulders and said it was probably a mistake and that I should have the test done again….
But this time I told her Ι wanted to take the test at a private lab so I can get my results ASAP so she referred me to a private lab at half price…..
What really made me angry was the fact that she knew the results and she left me in the dark worrying for 3 WHOLE MONTHS!!!!! A simple phone call would have saved me so much suffering!!!
Well I took the test again in June at the private lab and it was still non detectable!!!! I’m soooo happy, I still can’t believe it!!!!
But I still want to take it one more time in a month or two, just to make sure (7-8 months post to treatment).
Other than that my arthritis stabilized, it never went away but at least it didn’t get worse and I don’t have to take prednisone anymore!
(I guess the damage to my immune system after 30 years of fighting the virus was too much)
I will keep you posted on my next test result…..I hope I’m not taking too much of your time.
I just think what you are doing for everyone is admirable and in my opinion you are the greatest person I have ever met and I am very lucky to have found you!!! Thank you for giving me my life back!!!!
Wishing you all the best for you and your family,
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.