Greg Jefferys Hepatitis C blog deals with all the issues associated with hepatitis C
These are interesting times. Gilead is playing its cards now, making its moves, like the dark forces of Mordor the minions of Gilead are moving to Sauron’s command’s… across the world they are moving in the shadows spreading corruption and death.
In India through who knows what factors? Was it corruption, bribes and back room dealing that had the Indian Patent Office’s decision has been reversed? Who knows?
In the UK there are whispers and rumors that Gilead intends to sue the British NHS for not buying enough of Gilead’s grossly overpriced Hepatitis C medicines, even though Britain is paying about tens times the price that Australia is paying for the same medicines.
In Italy the Italian Customs officers are doing everything they can to stop Italians with Hep C accessing treatment that would save their lives and the Italian health service millions of Euros.
In Serbia people die every day as their Customs Officials block shipments of life saving medicines even though the Serbian government can not offer its citizens with Hep C access to the new treatments.
In the USA Gilead continues to hold the insured and uninsured people with Hep C to ransom.
“Buy or Die !” is the cry.
I am sitting in a train rolling into London. It is 8.30 a.m. and I have been on this train for a bit more than 2 hours. I’m traveling to London to meet the crew of a French television station who are doing a documentary on the issue of access to affordable Hepatitis C treatment. But it is not only about Hep C treatment, it is about access to affordable health care generally.
All around the world the cost of medicines in the past 20 years has risen dramatically as big drug companies around the world use their money and influence to drag higher prices for their medicines out of the pockets of people around the world by buying politicians, health officials and other people of influence in the the health “industry”.
(When did health become an industry?)
The way that this manifests in the ‘developed world’ or in ‘first world’ countries is that drug companies buy favorable outcomes either through direct or indirect corruption.
They influence politicians and political parties by donating funds to election campaigns.
They influence the medical profession by making grants to research universities and hospitals thus buying the support of influential doctors and institutions.
They buy influence and loyalty with the many (not all) ‘official’ Hepatitis advocacy groups through similar “donations” (in the case of Hepatitis Australia it was nearly $250,000 in grants last year) as well as paying for free trips to ‘conferences’ in exotic locations.
Then of course Big Pharma spends money on advertising and on public relations and on influencing and manipulating the news media by well targeted and well constructed press releases.
For example there has been a whole raft of press releases about the dangers of generic Hep C medicines being fake or even dangerous. Fear is a favoured weapon of the forces or Darkness.
Big Pharma also wields significant influence over the world of social media and in chat forums by having professional “trolls” maintaining a 24X7 presence in all significant Facebook groups and other forums.
The concept of a “troll room” is an interesting one given I am using the Mordor metaphor.
For those of you who do not know what a ‘troll room’ is it is a room full of people paid to monitor and influence chat rooms and Facebook groups. To inject doubts and fears by manipulating conversation threads and discrediting people who, in the case of Hep C generics, are trying to get usefully information out and about.
And of course they also have behind the scenes influence in all large corporate groups, the mega wealthy heads of these giant international companies have both corporate and social connections.
For example we see that recently Dr Freeman’s FixHepC group has been banned from advertising on Facebook. Dr Freeman’s paid advertising was totally legitimate but Facebook has now removed his adds and will no longer allow him to advertise on Facebook. When one considers what utter rubbish is allowed to be advertised on Facebook one can only wonder from where the order came to have the FiXHepC advertising removed.
Another example is how I had my Western Union account blocked and it remains blocked even though I have spent hours talking to upper management of Western Union in the USA.
Western Union claimed they had blocked my account because they thought I was money laundering. I spend hours on the phone with their middle ranked managers and sent them copies of my media coverage and links to news stories about what I do to show I was not a money laundering operation.
After much discussion they accepted my story they assured me that they were satisfied that I was not doing anything illegal and my account would be re-opened.
Of course my Western Union account is still blocked and I can not send or receive money by Western Union and nobody who lives at my home address can either, not my son, not my daughter in law, not my wife.
That is how these guys play the game, it is all back room deals, behind the scenes manipulation. Striking from the shadows.
Make no mistake Big Pharma has no other goal but to increase its profits and it will do so at any cost, human lives and human suffering means nothing to the ghouls that run these big pharmaceutical companies. If 100,000 people die next year because they want to increase their annual profits by one or two percent then 100,000 people will die.
And next year more than 100,000 people will die pure because of the greed of companies like Gilead.
20th May 2016
The Australian Situation: or how we defeated Big Pharma
Whilst Big Pharma is a powerful adversary with no moral boundaries or ethics it is still possible to beat them on a national level. It does require these things:
1. Government officials who are good negotiators and can not be corrupted (yes they do exist)
2. National importation rules that allow personal importation of medicines (for personal use).
If a nation has these two things then they can beat Big Pharma and dramatically force down the prices of all pharmaceuticals but in this instance I use Hepatitis C medication as an examples.
So What Happened in Australia?
In Australia there is a government sponsored entity called the Pharmaceutical Benefits Scheme (PBS) which subsidises certain medicines once they are approved. The beurocrats at the PBS negotiate with the drug companies for a suitable price for. Of course the drug companies want the maximum price and the PBS officials want the minimum price.
In Australia Hep C was being treated with Interferon plus Ribavirin and the overall success rate was a little better than 50% and the side effects were a nightmare.
The price per treatment was around $50,000 and a little under 4,000 people were treated each year. (There are 10,000 new Hep C cases reported each year in Australia)
Because Gilead had the monopoly for Sofosbuvir and Ledipasvir and Bristol Myer Squib held the monopoly on Daclatasvir (which is of no use without Sofosbuvir) the two Companies were holding out for a price of above $84,000 for a 12 week treatment of Sofosbuvir + Ledipasvir (Harvoni) and around $45,000 for 12 weeks of Daclatasvir.
The negotiating team from the PBS (which included both government officials and several medical notables) were arguing for a price that meant that a treatment would cost the PBS not more than they were currently paying for the Interferon + Ribavirin treatment and the drug companies were holding out for the higher price because, they argued, that this treatment was twice as effective as the Interferon based treatment.
This argument had been going on for a couple of years and there was a stale mate until generic Sofosbuvir, Ledipasvir and Daclatasvir came along.
Dr James Freeman and myself began to assist people to access these new generic Hep C treatments and suddenly Gilead and BMS did not have the monopoly any more.
Suddenly large numbers of people in Australia were accessing generic versions of these drugs at a fraction of the cost that Gilead and BMS were asking.
At first the Australian medical profession were skeptical about how affective the new generic treatments were and were reluctant to prescribe them for patients with Hep C but as the results of treatments began to flow through doctors saw that the generics were just as effective as the brand version and they started to prescribe them.
A small wave soon became a Tsunami. In July 2015 between 10 and 20 people per week were beginning treatment with generics from India but by December 2015, only 6 months after the first people imported generic Hep C treatments into Australia, more than 150 Australians every week were beginning treatment of their Hep C with Indian or Chinese generics.
These treatment rates meant that in 2016 we would expect to see more than 10,000 people treated with generic Hep C DAAs (Direct Acting Antivirals) in Australia, or double the treatment rate of previous years.
All this meant that Big Pharma no longer held a strong negotiating position, their potential share of the market was being rapidly eroded. This in turn gave the PBS a very strong position. They could say, “Either you drop your price or we simply let generics take over the market and you will get nothing.”
So to cut a long story short, this is the deal that the Australian PBS came to with the drug companies.
They would pay for Harvoni about $60,000 per treatment, for Sofosbuvir about $40,000 and for Daclatasvir about $20,000 BUT… the big sting in the tail was that the treatments paid for each year would be capped at 6,000 treatments per year after which all treatments for that year would be supplied free by the drug companies.
In other words if the PBS provided 10,000 12 week treatments to patients in any year then the drug companies would supply the medicines for the last 4,000 treatments for free. Yes FREE.
The drug companies had reasoned that, based on figures for the previous 10 years, the PBS had treated an average of not more than 4,000 patients per year so by making the figure 6,000 there was not much chance of that many patients being treated.
However they seriously miscalculated.
There was massive media and public awareness of the new Hep C DAAs and their price and their affectivity and this resulted in huge media coverage of the new Hep C DAAs being listed on the PBS and a subsequent huge uptake of the medicines.
In the first three months of the new Hep C DAAs being on the PBS more than 6,000 people were treated, or four times the amount expected.
Using current figures it is likely that somewhere above 30,000 Australians will be treated with Harvoni, Sofosburvir and Daclatasvir and the drug companies will have had to supply 24,000 of those treatments for free!
This means that the Australian government is paying around $2,200 per treatment. The cheapest rate of any country in the world. Generic prices.
Why has this happened? Why is Australia getting such a good deal whilst the same drugs are costing US$80,000 plus per treatment in the USA where the US government actually subsidised the research and development phase of Sofosbuvir?
The reason is simple: Generics.
Because Australia was being flooded with generics Big Pharma saw that it would soon lose the Australian market entirely to generics so it had to do a deal fast.
Fortunately the Australian government negotiators were competent and were able to use there position of strength to squeeze a really good deal out of Gilead and BMS.
But the reality is that this was only possible because generics were about to totally dominate the Australian market for Hep C medicines.
This is how the people of the world can fight against the obscene profits that Big Pharma is squeezing out of the world’s health systems.
Governments of the world need to use generics at every chance and they need to encourage their citizens to use generics.
Governments can easily ensure that generics come from reliable manufactures and suppliers, this is child’s play, simple.
Instead of the current situation, such as in Italy or Serbia and dozens of other countries, where the governments actively attempt to prevent their citizens access generic treatment.
If the use of generics is encouraged, not only in the treatment of Hep C but in diseases like cancer and so on then the prices of medicines will fall and all people will have a chance to access treatment.
Of course the drug companies should make a profit but a fair profit, not an obscene profit, not a profit that causes death and misery to hundreds of millions of people who are excluded from treatment because of the cost of the medicines, because of greed.
22nd May 2016
Drug Wars: Episode 2
The Big Pharma Empire Strikes Back
I recently posted on Facebook that Gilead’s sales for Hep C DAAs ad dropped by about US$1billion in the first quarter of 2016.
Here is an extract from the company report that has seen Gilead shares drop significantly:
Antiviral product sales, which include products in our HIV and liver disease areas, were $7.2 billion for the first quarter of 2016 compared to $7.0 billion for the same period in 2015. In the U.S., antiviral product sales were $4.0 billion for the first quarter of 2016 compared to $4.9 billion in 2015, primarily due to a decline in sales of Harvoni® (ledipasvir 90 mg/sofosbuvir 400 mg), partially offset by increases in sales of Sovaldi® (in the USA) (sofosbuvir 400 mg),…. In Europe, antiviral product sales were $1.6 billion for the first quarter of 2016 compared to $1.7 billion in 2015, primarily due to a decline in sales of Sovaldi….
Obviously the cause for the drop in sales in both these markets was because people are now turning to generics, at about 100th the price of the branded products like Harvoni and Sovaldi, of course they are.
In this context is important to remember that Gilead was not directly responsible for the research and development of these important drugs. Gilead simply purchased the intellectual property and then added a huge profit margin by multiplying by about 1,000 times the cost of production.
Gilead did what the “most hated man in America” Martin Shkreli did, it purchased the rights to a medicine and then put the price up to an outrageous level that made the medicine completely inaccessible to most people.
The only difference between the two is that Gilead has much more experience in public relations and media management than Martin Shkreli; and much, much more money.
But back to the drop in DAA sales.
Even with a $1billion drop in sales Gilead would still have made somewhere in the order of $5 billion dollars gross profit from its Hep C DAAs in the first quarter of 2016 and I would guess that in 2016 Gilead will make around $20 billion in profit from DAAs (including royalties from licensed Indian generics). Not a bad profit for the year, and that is excluding profits from other drugs that it has the monopolies on.
Gilead is a company that profits from people’s sickness, squeezing money from anyone who can barely afford the cost of medicine and excluding everyone who cannot.
But even when making those monstrous profits of tens of billions of dollars this year it will still annoy the dark lords of Gilead that some of their profit, some of their market share, is being eroded.
Like the feudal lords and robber barons of yesteryear these people are as much concerned with territory, power and control as with wealth and money.
So Gilead spends a few hundred thousand dollars fighting in the Indian courts to regain control of Sofosbuvir in India even though they are making hundreds of millions of dollars from the existing licensing agreements.
So we see FixHepC’s advertising on Facebook removed.
So we see Western Union block my accounts.
So we see DHL refusing to ship generics out of New Delhi
All little things but these are the small victories that greedy and petty people thrive on.
Now in Australia the TGA (the Therapeutic Drugs Administration is an Australian government authority which has similar roles as the FDA in the USA) has stopped Dr Freeman’s Buyers’ Club from operating in Australia.
I am not saying that Gilead was responsible for the TGA’s decision but Big Pharma wields big influence and the TGA is made up of people and people can be influenced by power and by wealth. Gilead has money and power in large amounts.
Of course such an action by the TGA because we know the kind of people who move in the shadows of such organisations. It was expected and, being a man of foresight, Dr Freeman and his friends planned for this and the entire operation switched seamlessly to a more friendly environment in the nation of Myanmar (Burma). So this stupid action by the Australian TGA and its incompetent, bungling bureaucrats does not affect in any way FixcHepC’s operations as it is an internet based business and so its day to day operations will not be altered and FixHepC will continue to provide affordable generic treatment options to people around the world afflicted with Hepatitis C.
Below is a copy of the post by FixHepC from their website:
The TGA has advised that, in their view, the fixhepc.com website appears to promote the use and supply of prescription-only medicine.
The promotion of prescription-only medicines to the public is an offence under Australian law.
Accordingly there is no access to:
fixhepc.com.au or fixhepatitis.com.au.
fixhepc.com is now available via Fixhepc.com itself has been transferred to Myanmar where it can continue its work of assisting with equitable affordable access to hepatitis C medications to patients around the world.
See more at: http://fixhepc.com/tga#sthash.vJc5oVig.dpuf
So Big Pharma has used it influence to try to shut down FixHepC but has failed.
But they will try again, and fail again and then they will try again.
However the genie is out of the bottle and will not be put back in.
With more than 150 million people with Hep C around the world needing access to affordable generic treatment the work of Dr Freeman and others like him will continue and access to generics will become easier and the attempts by Big Pharma to block access will fail.
But there will be a struggle and there will be many more attempts by Big Pharma to block access to affordable generic Hep C treatment but we, the people, will not falter in our struggle find ways of giving people access to affordable treatment.
24th May 2016
Everyday I receive emails from people around the world about how their government is preventing them from accessing generic Hepatitis C treatment by blocking shipments at the border.
Today I received an email (copied below) from a person who I am in the process of assisting in getting generic Hep C meds. He will drive across the border of Latvia to another country where a friend of mine has a 12 week treatment of generic Harvoni wafting for him. I am organising the meeting and then this Latvian will drive home and begin treatment of his Hep C.
It will not cost the Latvian government anything. The medicines he will be using will be generics manufactured in India under license from Gilead by an internationally respected and certified pharmaceutical company.
He has to drive across the border because Latvian Customs regularly blocks shipment of generic Hep C meds and returns them to India.
The same happens in Italy. If an Italian with Hepatitis C seeks to import their own treatment, thus saving the Italian Health Service about 30,000 Euros, the Italian Customs will seize the generic Harvoni and either return it to India or destroy it.
The same happens in Serbia.
So every day now I spend a lot of time figuring out ways of getting generic Hep C medicines to people with Hep C in countries like Italy, Serbia and Latvia.
Of course the best option for people in these countries is to fly to India and buy the meds there and return home with them.
This is perfectly legal but it is an extra cost that many people cannot meet so I help them find other ways.
So the question arises: Why do governments prevent their people from accessing medicines that will cure a potentially fatal disease like Hepatitis C? It is a disease that has huge social and economic costs and all these countries, like Latvia, Serbia and Italy are not rich countries. They are struggling to provide any treatment through their health systems.
So why do they stop their people getting treatment?
Is it corruption or is it incompetence? I don’t know.
Thank you so much for organizing these generic Hepatitis medicines for me. I know how busy you are fighting this live/death fight for all people who suffers from Hep C. I’m reading your blog.
Lately there is also big attention in Latvia about all this drug deal. Yesterday in news portal was a story about woman who was working in laboratory in hospital for years diagnosing Hep C and now she became sick and tried to purchase generic Harvoni from India and of course Latvian customs seized her drugs and sent them back to India. In the news was a letter this woman wrote to the President of Latvia explaining how lot of people is betrayed by their own country. We pay taxes, we do care for our own health, but gov can’t afford to heal people and there is only 160 spots for treatment with new medicine in a year. So basically, if you are infected but you don’t have cirrhosis yet – you’r out until you will become really sick. Doesn’t matter how old are you. So there are lot of respond from people here about this problem because nobody really realize a real number of people here infected. In this letter to the president woman was shocked about if gov can’t provide treatment then how they dare to take away chance for those who have bought meds by themselves by their own money. This woman was literally crying in this letter that she have been loyal citizen worked in hospital, raised five children and now when she became sick this country doesnt care about her anymore.
It is a terrible thing
Even i’m not treated yet and still are sick … there is days i can’t get out of my head that i should try to do something here to help people with solution. I know that i don t have such a power here, but it … feels like it would be right if i could help somehow … spread the word or … i don’t know !
So I hope you’r doing fine and i am amazed with road you have took fighting the war against such enemy … god bless you!
30th May 2016
The Italian Job: Good News.
Over the last year the Hepatitis C situation in Italy has been one of absurd frustration for Italian Hep C patients. Whilst the Italian Health System is under funded and struggling to provide for Italians with Hepatitis C the Italian Customs officials have been seizing generic Hepatitis C medications like generic Harvoni and Sofosbuvir and Daclatasvir purchased by Italians from India.
The reason that Italian Customs gives for refusing to allow Italians to access affordable treatment, thereby saving the Italian Health System tens of millions of Euros, is that Harvoni, Sofosbuvir and Daclatasvir are all medicines that are available in Italy.
However in Italy the law does allow for Italian citizens to return to Italy with 12 weeks supply of generic Hep C meds.
So I have been helping Italians fly to India and buy their meds there and then return home. But of course not everyone can afford that extra cost. Also a lot of people with Hep C are too ill to fly to India.
In this case if they have relatives or friends in the UK then they have the option of flying there, residing there, and getting there medicines sent there. This works okay in the current EU and UK regulations. However not everyone can do this either.
So a lot of Italians have been in the tragic situation of knowing that the cure for their Hep C is there but their government is stopping them accessing it.
That has now changed.
A loop hole in Italian rules for importing medicines for personal use has been found.
As mentioned above Italian Customs currently prevents the importation of generic Hepatitis C drugs like Harvoni and Sofosbuvir and Daclatasvir BECAUSE THEY ARE ALREADY AVAILABLE IN ITALY (no matter that the cost puts them out of the reach of most people).
However a new generic Hep C drug combination called Darvoni is now readily available and there is no equivalent available in Italy therefor it can be imported if you have an Italian doctor’s prescription.
What is Darvoni?
Davroni is generic Sofosbuvir and generic Daclatasvir combined in the same tablet.
This was the ordinal brainchild of Dr James Freeman, world renowned pioneer of generic Hep C medicines.
He suggested the construction of this pill to the Bangladesh based pharmaceutical manufacturer Beacon Industries last year when he realised that the combination of Sofosbuvir and Daclatasvir was as effective, or more effective, than Harvoni across all genotypes of Hepatitis C.
The other advantage of the Sofosbuvir + Daclatasvir is that Daclatasvir is a much easier and cheaper drug to manufacture than Ledipasvir.
Beacon Industries reacted swiftly to the challenge of creating this new Hep C medicine and when they were thinking about what to call the new drug combination Dr Freeman half jokingly suggested ” Darvoni “.
So Darvoni it was and Darvoni is are now in full production.
True to Dr Freeman’s prediction Darvoni is significantly cheaper than any other generic Hep C drug on the market with a 12 week treatment costing less than US$1,000 including shipment costs.
Also Dr Freeman’s recently trials using generic Hepatitis C treatments showed two things:
1. That the Sofosbuvir + Daclatasvir treatment is as effective or more effective than Harvoni and works across all Hep C genotypes, something that Harvoni does not do.
2. That a single tablet combining these two drugs is significantly cheaper to produce than generic Harvoni or buying Sofosbuvir and Daclatasvir in separate tablets.
Why have Sofosbuvir and Daclatasvir not been combine in on pill before?
Sofosbuvir is made by Gilead and Daclatasvir is made by Bristol Myer Squib. These two giant, international pharmaceutical companies are rivals and like warring dictators they would not reach a compromise even if it helped them both and the people with Hep C.
This kind of production can only occur in a country like Bangladesh that is not a signatory to the international patent agreements.
How Reliable is Darvoni and Beacon Industries?
Beacon Industries is a long established manufacturer of generic pharmaceuticals. Its main market is Asia and Africa. Beacon imports the Sofosbuvir and Daclatasvir APIs from China and compounds them and makes them into tablets. Their factory is very modern and their administration and manufacturing teams are highly trained.
As mentioned previously Dr Freeman has had Darvoni tested in one of Australia’s leading chemical testing laboratories and also monitored it use in patients. The quality and effectiveness of Darvoni has been found to be to be of the highest standard.
So now Italians and people from other countries around the world have access to an effective and affordable new generic treatment for Hep C… Darvoni
1st June 2016
Developments in Generic Hepatitis C Medicines in India
Because of the increasing demand for generic Hep C treatments from India and the money that can be made supplying these medicines a number of things have happened.
Firstly a huge number of “suppliers” has been spawned. Most of these people have no experience of a pharmaceutical or medical nature but have simply seen a chance to make quick money by creating a website and selling generic Hep C meds online.
I recently did an interview with a Chinese reporter who told me that there were now hundreds of websites in China selling Indian generics to the Chinese, often to outrageously high prices.
In India it is the same and most European countries have “suppliers”.
Some are good, some not so good and some are just plain rip off merchants.
This proliferation of ‘suppliers’ has created quite a bit of competition between them, which on the surface is a good thing because it has reduced prices however it has also created some problems.
In order to sell at a competitive price some suppliers of generic medicines have reduced their price to below actual cost and are making their profits by putting inferior or fake medicines in with the real meds. This means that whilst a patient will get a response, such as a viral load reduction and an improvement in liver function, the response will not be sustained because of the low dose level.
Another consequence of competition is that people are saying that one brand of generic Hep C medicine is better than the other.
For example a supplier of Cipla products will say that the Hetero generic Harvoni is not good quality and visa versa.
The reality is that all licensed generic Harvoni and Sofosbuvir is made by two India pharmaceutical manufacturers Hetero and Natco; all the other brands are made by these two companies and simply have different coloured tablets and different labels.
Here is an extra from a post by well known international Hep C advocate Giten
It has been brought to our notice that people are saying some brands of the Hep C medicines are better in quality than others. It is NOT TRUE. If you are sourcing from India, all the medicines are manufactured, currently, either by NATCO or Hetero. It apparently is coming from people who sells mostly Cipla (Hepcvir L) brand. This is completely wrong information and please do not believe in this as it could be that they are spreading to sell the medicines they have. Anyone who has a Hepcvir L or Hepcdac bottle right now with yourself can check in the packaging and bottle and you will see it is written there that it is manufactured by Hetero. Please share this information, do not spread such rumors and please do not believe in it if you hear……….
2nd June 2016
Generic Hepatitis C Treament in the UK… Things are improving
All around the world the resistance by the medical “Establishment” to generic treatment of Hepatitis C is being slowly eroded by the reality of results, of cure rates.
I recently met two students in London who are studying a post-grad course in social change at one of Londons most prestigious universities. For their final project they are studying inequality relating to access to healthcare – they are specifically interested in Hep C and access to generic treatment in the UK and around the world. What happens in the situation when people can’t access Hepatitis C treatment on the NHS (or via their public health service in countries outside of the UK).
They’ve asked me to put it out that they would be grateful if anyone reading my blog would be willing to complete the short questionnaire about their experience with generic Hep C treatment. This questionaire can be done completely anonymously and the information won’t be sent on to any third party.
This is a really important project with global long term implications so if you have done generic Hep C treatment, are presently doing generic Hep C treatment or are considering doing it please use the link below and fill in the form. This is not only for people from the UK but for everyone everywhere doing generic Hep C treatment.
Meanwhile in the UK things are slowly moving along. I had a couple of emails from folk in the UK this morning. Both have just completed generic Hep C treatment.
I just wanted to check in with you since I have not been in touch since I started my generic Harvoni treatment in March, which you kindly facilitated for me.
The treatment itself was pretty rough since I seemed to have a cold, gum infection, cough or various aches and pains throughout the 12 weeks and my energy levels were all over the place. The note on your blog about taking time out to rest was very helpful advice since it does not usually occur to me to do that.
Two positive bits of news; firstly that I had results back last week from a blood test I organised privately which showed the virus was undetectable after 10 weeks and I just hope it stays that way this time.
Also, I had an appointment with my NHS hepatologist at one of the big London hospitals just before the end of my generic Harvoni treatment. I decided tell him then that I had been taking Harvoni. (Based on what I read on your blog I had not told him when I started, since it seemed to me it could compromise him and potentially affect future NHS support for me).
He is a good guy though and was very supportive; he knows about the Buyers Club which he said was completely reliable. He mentioned that several patients of his were already using the generic approach and that ‘of course’ he wished everyone would – although I assume he is probably not allowed to directly recommend it by law.
He immediately agreed to continue monitoring me for the next 12 weeks and has booked me in to his special clinic for what I guess may be the first wave of UK generic Harvoni treatments.
I thought you would be interested in this information, which may encourage some of the HCV (Genotype 1) sufferers in the U.K to take the initiative…
Thanks and best wishes to you
Long time no speak.
Was waiting to get the final results from my Doctor yesterday before emailing you.
Finally i got the news i was hoping for. HCV viral load undetectable at the end of week 13 after finishing treatment.
Thank you again for all your help in making this happen.
For all hiv+ people out there, living under the shadow of their HepC diagnosis, i would strongly advise to take matters in their hands and get treatment asap. Generic drugs DO work.
As a 50 year old gay man I have a relatively healthy lifestyle. I am a non smoker and i very rarely drink alcohol, i exercise a lot and have a very healthy diet.
I was diagnosed with Hepc (Genotype 4) 10 years ago on top of the hiv diagnosis 5 years prior to that. When i was first diagnosed i was given straight away the option for treatment with Pegylated Intrerferon/ Ribavirin. Unfortunately it didn’t work.
As the years went by i was becoming more concerned about treatment. To my despair nothing was available. The only thing that my Doctor could do was to monitor my health. Even though physically i was in good condition, mentally it was becoming very hard to deal with.
During a routine hospital visit last year, i enquired about treatment on the NHS.
I was shocked to find the cost involved. It was becoming obvious that my chances of getting treatment on the NHS were almost non existent. At that point my consultant suggested i should look into the generic drugs that were becoming available on the Indian pharmaceutical market.
Having looked online i was completely overwhelmed. Not only by the amount information but also about the risks and dangers involved in ordering online. Considering this is not something you can discuss openly with others, i wasn’t sure where to find a reliable source. That is until i stumbled across your blog. After reading it several times i decided to get in touch with you. Your reply and information you provided was very reassuring.
My next step was to have a discussion with my consultant. Having decided that the best course of treatment, in my case was 24 weeks of Sofosbuvir – Ribavirin, i went ahead to order the meds. I was impressed how quickly the delivery was. For the last 12 weeks of the course i also added a course of 12 weeks of Daclatasvir. The cost of treatment was just under £2000. Compared to the risks involved in having to wait treatment on the NHS, i would advise anyone to go for the generic drug option.
I consider myself lucky to have had the full support of my consultant at the Hospital. Once i started the medication the results were very encouraging. The 2nd week blood tests revealed the viral load was already undetectable. Even though Ribavirin was hard to cope with i managed to get through the 24 week course. Despite my Hemoglobin was 110 at its lowest i still carried on cycling to work and the last 2 months of the treatment i also went to the gym on a regular basis.
Yesterday my Cd4 count was 1100, Hemoglobin 144, ALT 16 and HCV undetectable.
Today i don’t have to worry again about HepC for the rest of my life. I hope it works for you too
Thank you again for all your help.
All the best