22nd January 2016
Affordable HEPATITIS C Treatment Options 2016
The number of options for accessing affordable treatments for Hep C has become very favorable in the last couple of months. I will make a short list of options here.
1. Licensed generic Hep C Medicines from India
As of January 2016 all genotypes of Hep C can be treated with licensed generic Hep C medicines from India. Gilead has licensed four Indian manufacturers to make generic Harvoni and also generic Sofosbuvir.
Bristol Myer Squib has licensed one Indian pharmaceutical company to make generic Daclatasvir.
So with the combination of Sofosbuvir with either Daclatasvir or Ledipasvir all genotypes of Hep C are covered. The cost for either Sof + Ledipasvir (Harvoni) or Sof+ Daclatasvir is the same.
If you are buying the treatment in India a 12 week supply will cost not more than 80,000 rupees.
If you are getting your Hep C treatment shipped from India to your home the cost will be between US$1,250 and US$1,400 depending on the Indian supplier and the means of shipping. For example having your treatment sent by airmail will be cheaper than having it sent by DHL or Fed Express.
Also small operators will have lower overheads than larger suppliers but they may not have the expertise for getting paperwork right for your country.
Whoever you use to supply your generic Hep C treatment from India make sure you can check on their credentials. There are a lot of honest suppliers out there but also quite a few scammers.
2. Unlicensed Generic Hep C Treatments from Bangladesh
Generic Sofosbuvir, Daclatasvir and Harvoni all became available in Bangladesh about 8 weeks earlier than in India.
The Bangladesh generic Hep C treatments, such as Twinvir, were, and remain, unlicensed.
These Bangladesh Hep C drugs are made primarily by two major Bangladeshi pharmaceutical companies Incepta and Beacon. Of these Incepta is the largest and it has traditionally made its business selling generic medicines into Africa.
All of the Hep C medicines made in Bangladesh are made from imported APIs (Active Pharmaceutical Ingredients) imported from China.
There appears to be no noticeable difference in the quality of Bangladesh generics when compared to Indian Hep C generics though this is not 100% certain because both products have only been in the market a short while.
There is no difference in the prices of Indian or Bangladesh Hep C medicines.
So my preference for suggesting the use of Indian generics is solely based on the fact that the Indian generics are licensed by the patent holders of the original drugs and therefore have full access to all manufacturing technology that the ordinal patent holders have. This means that the Indian licensed generic Hep C meds, like Harvoni, are identical to the original branded versions. Except for price.
3. Australian Unlicensed Hep C Generics
At least four Australian pharmacies are buying Hep C APIs from an Australian government licensed importer and compounding them into single dose batches. These generics are in capsules rather than tablet form but have been encapsulated by highly trained professional chemists. The APIs being used are all tested and certified pure in Australia by an independent and government registered authority.
So on one level the Australian generics are very different from the Indian and Bangladesh generics however the active ingredients are identical and the results from the hundreds of people who have treated their Hep C with the Australian generics is exactly the same as the results of people using the licensed Indian generics.
If you live in a country like Canada, Argentina or Ireland where the government is so oppressive of its people that it prevents them importing life saving medicines then you either have to risk having the meds sent in disguised as something else or you have to travel to India, Bangladesh or Australia and buy your generic Hepatitis C treatment there and take it home with you.
Personally I would recommend India over Bangladesh as a destination and I can give you quite a few good contacts in India in various cities.
You can have a great holiday in India, get some good quality cheap dental work done and get rid of your Hep C all at the same time.
If you don't feel like you could cope with India then Australia is a very nice option for getting your generic Hep C treatment. You can travel to any part of Australia and I have an extensive list of doctors who are happy to write you a prescription for which ever Hep C medicine you need. All generic Hep C medicine can be purchased in Australia with and Australian doctors prescription and the meds can be sent to you where ever you are staying in Australia. So have a holiday, walk the beaches, enjoy the Australian life style and get rid of Hep C as well.
29th January 2016
I am not writing in my blog as regularly as previously because most of my time is now divided between doing my PhD at the University of Tasmania and helping people around the world get access to affordable Hepatitis C treatment. With the Australian government making Hep C medicines available with a subsidy on the PBS (Pharmaceutical Benefits Scheme) demand for my assistance in Australia has reduced significantly but not entirely. This has enabled me to focus on helping people with Hep C around the world access generic Hep C treatments.
Over the months I have developed quite an understanding of the International Hepatitis C situation and how Big Pharma has manipulated the market places around the world creating situations, where doctors and other health professionals refuse to prescribe generic Hepatitis C medicines even though they prescribe every other form of generic medicines.
Obviously Big Pharma has focused most of their attention on gaining control of the markets in the large wealth countries in Europe and North America because this is were the huge profits reside.
Regardless of that it is still possible for people in all those countries to access affordable Hep C treatment. In Europe anyone who lives in a country to prohibits the importation of generic Hep C meds for personal use, such as France, Germany, Italy, Ireland and so on can simply fly to the UK and stay there about 5 days and have the Harvoni or Sofosbuvir sent to an address there. Its perfectly legal and simple if you are from an EU country.
If a person lives in an Eastern European country they can do the same thing by going to Romania or Moldova and organising a shipment address there.
If anyone is interested in those options I can email information on the exact process.
Meanwhile generic Hepatitis treatments in the USA are flowing through. More and more US doctors are now writing prescriptions for generic Harvoni and other generic Hep C treatments from India. This is happening because they are seeing the results of those people who have undertaken treatment of their Hep C with India generic Harvoni or the Sof+ Daclatasvir combination. They are writing prescriptions and supporting their patients if the importation is challenged by the FDA, which is happening less and less.
Recently I received a phone call from an Attorney in the USA whose client I helped to import generic Harvoni from India. This client, like many US people with Hep C, had health insurance but was refused access to Gilead's Harvoni because he "was not sick enough".
I hear this story again and again from the USA where people have had Health Insurance all their working life and then been refused access to treatment in the USA and been forced, in desperation, to buy generic Hepatitis C treatment from India.
Anyway this attorney is based in Kentucky and he is organising a law suit against his client's Health Insurer. He would like to hear from anyone in Kentucky or Florida who has been refused coverage by their health insurer and may be interested in joining a class action to sue this Health Insurance company.
If you are interested please email me and I will send you this attorney's contact details
4th February 2016
I get four or five email like this nice little email, below, every day now. It is indicative of the effect of people taking control of their own lives and their own health and getting results.
I thought I would let you know treatment progress with Ledifos.
Genotype 1a, Fibroscan 13.9 kPa F3-F4. HCV RNA 188,000 prior to commencing treatment.
7 Jan, 2 weeks after commencing treatment, HCV RNA not detected and liver function within normal range.
21 Jan, 4 weeks HCV RNA not detected.
My specialist was a bit surprised and I was very happy that I responded to treatment so quickly.
I am very grateful to you for assisting me to source affordable meds. I plan to return the unused Ribarvirin to you when I travel to Australia on 4th March.
Many thanks and best regards,
As I said above these results are coming in everyday now. To be honest I have had, in the last 6 months, only one person contact me to say that they had relapsed. This was a guy from the USA who had Genotype 1 and decided to take the gamble of a cure just using Sofosbuvir and Ribavirin. He new he had about a 70% chance of a cure and flew to India himself on those odds.
He did a 12 week treatment and, sadly, the virus was not totally removed and he relapsed at 12 weeks out from the end of treatment.
He now plans to return to India and do the treatment again with generic Harvoni.
That is the only story of a relapse from a person using a generic Hep C treatment I have received as of today.
Proposed EASL Generic Treatment of Hepatitis C Paper: Help Requested
On the subject of Hep C generic treatment results Dr James Freeman is putting together a paper for this year's EASL conference (EASL = European Association for the Study of the Liver).
He is trying to gather together as many treatment results from people who have treated their Hep C with generic DAAs from India, China or Australia.
What he needs is a copy of your pre-treatment viral load and your post-treatment viral load. It does not have to be SVR 12. It can be any viral load test done after your treatment ended. It can be the day after or the week after.
He would also like to know which drug combination you used to treat your Hepatitis C and what genotype you had and duration of treatment.
Also your age and gender.
So in summary
Copies of viral load reports
If you would kindly email this to me I will be assisting Dr Freeman with this project and will forward your data on to him.
5th February 2016
Today I heard a couple of pieces of disturbing news concerning access to Hepatitis C treatment on Australia's PBS. One came in the email below:
Sorry I didn't know of any other way to contact you. But I went to Lismore liver clinic in New South Wales today. I have Hep C genotype 1a. F1 borderline 2. 8.4 hundred thousand viral load.
I was told I'm not sick enough to get on PBS until at least 2017. So I live in northern NSW, at ###### 2.5 hours south drive from Gold Coast n 1.5 hour drive north of Coffs Harbour. I was told to contact you as even my own doctor won't prescribe this medicine. If you know of any treating doctors who will prescribe me on March 1 or around then on the PBS can you please let me know. I'm able to get to Gold Coast or down Coffs Harbour way.
Thank you so much
Sadly this email seems to confirm my initial fears that access to Hep C treatment with the news DAAs such as Harvoni, Sovaldi and Daclatasvir will be triaged.
Of course it will be because there is no way that Australia's public health service could ever cope with more than 100,000 patients wanting treatment for their Hepatitis C.
So it is the old story we have heard again and again. People with Hep C being told that they are not sick enough to get treatment.
The person who wrote the above email in borderline F2 .... so she it told to wait until 2017 when it is likely that she will be F4, have scars on her liver, have cirrhosis, have a greatly increased change of getting liver cancer.
So she has to wait 2 more years knowing that the Hep C virus is slowly chewing holes in her liver and destroying her life.
It is very disappointing but this is the same story in the UK where people were told that access to Hepatitis C treatment there would not be traiged but it is. And it is the same in the USA where people wanting treatment for Hep C through their health insurance are routinely told that " they are not sick enough."
9th February 20165
Bangladesh, Twinvir, Darvoni and Daclatasvir
I receive this email from a US citizen who lives in Cambodia. He flew to Bangladesh buy his generic Hepatitis C treatment and purchased generic Harvoni, as Twinvir, from Incepta in Banlgadesh.
He was extremely happy with the professional reception he received in Bangladesh from the people at Incepta and just as happy with the results of his Hep C treatment using Twinvir. He was concerned that Bangladesh is being ingnored in favour of India and he has some good points, as well as tips for going to Bangladesh, which can be cheaper and more convenient for people in South East Asia and other parts of the world.
Thanks for all your hard work. Bangladesh should not be forgotten as a good and reliable source of generic Hep C treatment. It seems to be flying under the radar on a lot of the Hep C forums.
My own story may help level the playing field.
The "licensing" by Gilead of certain companies, might just boil down to their ability to collect royalties - nothing more.
Three months ago I traveled to Dhaka, Bangladesh. I arrived at noon. After checking into a hotel I hired a taxi to take me to Incepta Pharmaceuticals. They produce generic harvoni labeled Twinvir. Their office and shipping complex in Dhaka is very convenient. The management was happy to answer any questions I had. With my doctor's prescription I was able to purchase a 6-month supply of Twinvir (I have stage 4 fibrosis). They mentioned that some people who have traveled to Bangladesh from places where their doctor refused to provide prescriptions for generic Harvoni were able to purchase the medicine with a doctor's letter stating they had hepatitis C.
I flew home the next day. I started the treatment right away. A blood test after 2 weeks showed the virus was not detected and liver functions improved.
A blood test after 6 weeks also showed that the virus was not detected and liver functions had dramatically improved. After 3 months (this week) a blood test showed the virus was not detected and liver functions were now, in some cases, in the normal range.
My doctor has been more amazed than me!
He has since gotten a number of his other Hepatitis C patients on Twinvir. Some were treatment naive like me, others who had relapsed from former treatments. He wanted to show me the 2-week test results from several of them and all showed that the virus was not detected.
Bangladesh has several excellent pharmaceutical companies (including Beximco as well as Incepta) recognized by WHO, etc. Unlike India,because of their extreme poverty level, they are exempt from international patent laws. Indian drug companies, on the other hand, are required to pay royalties to Gilead. The price I paid was about $11 USD per tablet but I paid in the local money called Taka. The bottom line: For the price of a round-trip plane ticket, a one-night stay in Dhaka, a $50 visa on arrival plus $11 per tablet ? I was able to get a treatment that really is working!!!
Without going through the red tape and being "put on hold" by some public or private medical plan with political or commercial agendas.
Second email after a request from me for a little more information on the process of travelling to Bangladesh and buying Twinvir.
I am a US citizen living in Cambodia. Bangladesh offers visas on arrival for many countries. Some countries are visa-exempt. The visa on arrival costs $50 US plus a $1 bank service charge, the banks have little kiosks right in the airport terminal of Dhaka, one adjoining the visa-on-arrival desk. Easy! I just asked for visa for a few days - actually, I had what I came for and left the next day. After going through immigration, there are many bank kiosks to change money to the local currency - Taka. The rate is as good or better than elsewhere in the city - right at the airport. I calculated all I would need for the Twinvir and any other expenses, and changed it right there. Easy! The Thai Air daily flight from Bangkok arrives daily at about 12:30 p.m. I had booked a hotel room online and had their car pick me up at the airport. I checked in my hotel, hired their car to take me to Incepta - about a 30 minute drive. I got my Twinvir and was back at the hotel by 4 p.m. The next day I flew out of Dhaka. No problems with customs anywhere, though I did keep my prescription handy if it was needed.As I explained earlier, my doctor has encouraged others to do the same, and they are doing it as well. At the airport, the hotel and at the Incepta many speak English fluently. The Incepta office/shipping complex is in Tejgaon District, Dhaka. Many drivers know the location. It is also near to Nabisco, which many more people know the location of. Beximco Pharmaceuticals which produces generic Harvoni named "Lesovir-C" is located in the Dhanmondi District, Dhaka - also close by. But they were out of stock when I was in Dhaka.The Beximco agent I spoke with is named Badrul. He can be reached at email@example.com or by cellphone: +88 0171 933 5956. To contact Incepta: Dr. E.H. Arefin - cellphone: +88 017 130 48 994 - he can arrange shipping through proper channels.Or Brand Managers: Asif - cellphone +88 017 1333 8492 or Alimul - cellphone +88 017 1338 0056. They are all very helpful for those who wish to travel there. Dr. Arefin at Incepta related that they source their APIs currently from the Halcyon Corporation. Incepta also produces Daclisavir. Their lab uses a mass spectrometer to assure that Twinvir is the equivalent of Harvoni (sofosbuvir 400 mg. + ledipasvir 90 mg.).
10th of February 2016
It's been 6 months since my treatment was completed and last Friday I went and got blood taken for my 24 week post treatment viral load.
Got the results today. No Virus Detected !!!!!
So I am officially SVR 24
Last May I travelled to India to buy generic Sofosbuvir and Ribavirin to treat my Hep C genotype 2. I did 12 weeks treatment supervised only by my GP. I had a few minor side effects like insomnia and some anxiety but nothing worth worrying about.
toward the end of my treatment and after I completed my treatment I noticed a few weird things like my typing skills had gone strange, I frequently typed words back the front or scrambled. It was kind of like having Dyslexia. I was a bit worried about that but it went away after a couple of months. The end of treatment was most note worthy by the increase in strength and energy. People kept commenting on how much better I was looking. When I saw photos of myself from before treatment I realised how haggard I had been looking.
Now I am SVR 24... the people in the Hep C world who rubbished what I was doing now have egg on their faces. They were specialists in hospitals and the heads of Hep C advocacy groups like Hepatitis Australia... all warning people against using "dangerous" Indian generics now pretend that they really always supported the use of generics.
Now there are thousands of people who are cured of their Hepatitis C because of Indian generic Hep C medicines. Hurray for India!!!!!
13th February 2016
Bad News. Indian generics being blocked.
Well I was hoping that I would not ever have to write what I am writing now but it is not unexpected.
This week all shipments by two major Indian suppliers of Indian generic Hep C medicines have blocked at the airports by Indian customs.
In conjunction with DHL the shipments leaving India are being seized by Indian Customs.
Whether they will be released or not is another question??
One major supplier has already ceased shipments as the costs of having the shipments seized and not released mount up. This is mixed with the fear of prosecution.
It seems that Big Pharma is not going to allow the poor peoples of the world to access affordable Hepatitis C treatment.
They will have to pay the full, obscene price or die.
The evil persons who run these huge multinationals, and their minions, are determined to profit from the suffering of others and they have not been idle.
Big Pharma's cruel servants have been moving behind the scenes with their blood and tear stained money and buying favours where it counts. Now they launch their counter attack, blocking access to the affordable generic Hep C treatment coming out of India.
Perhaps it will be a temporary victory for them, perhaps not.
So we may just have to turn back to Bangladesh.
On that note I share this very helpful email from a person who got meds shipped from Bangladesh
Today (just after a month of taking Twinvir) my brother's blood is cleared from the deadly virus Hepatitis C!!! He will finish the 12 weeks course in 6 weeks!
I want to thank you so so much for the blog, for Al's contact, and for all the information and hope you gave to our family! You SAVED my brother's life. My gratefulness to you is immeasurable.
Let me tell you our happy ending story.
At the beginning I was not sure if I should buy a drug from Al (Bangladesh) or from P J(India). I talked to both guys on Skype. However, my friend's parents, who live in Bangladesh, actually called Aland confirmed that he is a legitimate good guy. So I went with with Twinvir rather that with Ledifos even though Twinvir was $150 dollars more. And I was right.
Unfortunately, since my brother lives in Russia, we could have delivery problems. Through different Russian blog sites, I had read that delivery with DhL was not recommended to Russia since the drug could be destroyed on the Russian border. I was recommended to use AMS carrier. However, Al said that AMS requires additional docs and he would not risk to send with AMS since it might not pass the Bangladesh custom.
So he went to send with DhL. However, when Al came to Dhl office, they told him that 90% of packages with medicines to Kaliningrad, Russia are destroyed or sent back. The problem was with the city Kaliningrad itself since it does not have border with entire Russia (it is former German Königsberg) . Most likely Kaliningrad has an extra parcel package security since it is surrounded by European Union. Al asked me if he could send the medicine to any other Russian city with DhL but I it was not an option for me any longer. I have read that any Dhl packages with medicine might have problems anywhere in Russia.
I asked him to use AMS and he finally agreed. However, he told me that it would be my responsibility if something bad happens on the Bangladesh border to the drug. And it happened. The drug did not go through the Bangladesh border. Thanks God, the drug was not destroyed and it was returned to Al safely.
Al suggested to send Twinvir to any of nearby countries again or he could send my money back. My dad lives in Moldova so Moldova became an obvious option.
My brother's daughter and I got my brother a ticket to Moldova (even though he wanted to wait for summer but we insisted). :))) My brother has fibrosis of a second stage together with vasculitis . Vasculitis significantly increases the speed of the liver destruction. By brother was working 3 jobs , feeding family of five, because he gave up on affording the treatment of $100 000. He buried himself in work 7 days a week from the morning till late night. He was working not stop, lost 10 kg from May till Dec, could not sleep from pain. And then I found your website!!!!!! Anyways, we persuaded him to go to Moldova for 10 days to get a medicine and spend some time with our parents.
Al was so so kind! He did not even take extra money for the second shipment of Twinvir to Moldova. I have read your recent post that some distributors would send the drug but they would not care what happens to it afterwords. Al is not like them. He helped us so so so much!
Long story short, Twinvir arrived safely to Moldova through Dhl.
My brother was at home with my parents for 10 days!!!! He has not been home and has not seen my parents since July 2010 because he was living in ####### and was working 3 jobs. Also is very expensive to fly to Moldova. Moreover, my brother has never been with my parents without his wife since he got married in 1#### when he was just 18 yo. It was first time since 1#### when my parents had a chance to be alone with him and to spoil him a little. He even gained 1 kg for 10 days being with them! They are so thankful to you and Al!!!! After his long needed vacation, he told my parents that he needs at least 10 days of vacation like that away from kids once a year to restore his strength. He said that he felt the love of our parents so so much.
So whatever happens - happens for better! Russian stupid custom rules made my brother see our eldery parents!!!
I attached my parents and my brother's selfie! Also, the special dietary food my dad cooked for him 5 times a day.
PS Now my brother quit one job, so he works only 6 days a week, not 7 and he has time to spend with his kids!!! He looks so so much better as well!
14th February 2016
The Show Must Go On.
I want to start by saying that I have been expecting a move from Gilead to block exports of generic Hepatitis C medicines from India ever since generics Hep C medicines became available. For some time I was warning people that is may occur. So it is not really a surprise that it has happened.
Of course I must admit that I thought that, just perhaps, the heartless and greedy bastards who run Gilead may have decided to allow the poor people of the world to have access to generic Hep C treatment and that Gilead would be happy with the dollar or two per pill that they are getting in royalties from India. But no... Gilead is greedy and heartless through and through.
"Pay the full price or die," the executives of Gilead mutter as millions of people around the world slowly die from this terrible, easily cured disease. History will remember Gilead as one of the great examples of inhuman corporate greed.
Lining up the ducks
One has to wonder if Gilead has been lining up its ducks for the last few months, planning an extensive attack on access to generic medicines. Planning how to prevent dieing people accessing a cure.
One would expect so.
Gilead is a company with vast resources, inconcievable wealth and global connections. One only has to recall how my Western Union account was blocked last year. It is still blocked today. No-one who lives at my home address can send or receive money by Western Union. Just a small demostration of Gilead's global influence.
Like Western Union, DHL and Fed Ex are both huge multi-national companies based in the USA. Suddenly, out of the blue, neither will handle generic meds. Neither Fed Ex or DHL will carry generic Hep C meds to Australia or New Zealand where such traffic is perfectly legal. One wonders why.
So how do we respond?
We respond by sending the medicines to people other ways. DHL and Fed Ex are not the only ways of legally shipping medicines around the globe.
So we will start using other courier services. Smaller ones but also with good reputations and global reach. The service will not be quite as fast as DHL or Fed Ex, instead of 5 to 7 days it will be 10 to 14 days but people will still get their medicines. People will be cured.
Greed will not prevent people from accessing life saving medicines.
Justice will prevail and we will make sure that people continue to be able to access affordable generic Hep C treatment wherever they are on Earth.
15th February 2016
I read this very sad post this morning on Facebook. From the daughter of a lovely lady who had just won the battle against Hep C but was taken by the side effects of Hepatitis C.
My mother ##### lost her battle to liver cancer this morning. She was just diagnosed Hep C FREE 3 weeks ago. The moment the doctor told her she was free of Hep C tears were streaming down her face with happiness. This Facebook group, Hepatitis C Treatment w/o Borders, gave my mother and myself so much courage and support.
Wanted to say a massive thank you to Greg Jefferys for helping guide us along the way and giving my mother the opportunity to being Hep C free.
I'm wishing everyone on here success in your treatment... and if you are having early signs of Cirrhosis get yourself checked and look after yourself as soon as possible.
My mother was scared to face the truth and waited way too long to start treatment, till she was so sick we finally came back to Melbourne and she was diagnosed with cancer caused from chronic cirrhosis. It's been a tough 6 months for her but today she rests easy. Peace xx
Every day I am talking to people with Hep C and so many say "Oh I will a few months to see if my appeal to the health insurance company comes through." or "I will wait to see if I can get this through the National Health Service."
And I say don't wait. With Hep C things can go very bad very fast. This happened to me. I went from being very healthy to very sick in just a couple of months. I hear of this happening all the time. Suddenly, after 30 or 40 years of being passive, the virus becomes aggressive. Suddenly damage starts occurring.
Don't wait, don't put it off. Get treatment now and get well. Don't wait until it is too late. Hepatitis C is now an easy disease to treatment and with generic treatment the cost is within the reach of most people.
CNN News Story
One of the most powerful tools we have against Big Pharma is a free and fair Press. The terrible injustice being inflicted upon humanity by companies like Gilead is finally getting more and more media coverage.
I recently did an online interview with a reporter from the US based television network CNN. She was particularly interested in the Indian generics situation and how I was helping people in the USA access generic Hep C treatment, either by assisting them with getting the medicines shipped to the USA or with helping them with making contacts in India.
She would really like to speak with some folk from the USA who have been down the generics path. Particularly she is interested in the story of the frustration of dealing with Health Insurance companies who will not pay for the treatment. The frustration of being told "You are not sick enough!" to qualify for the treatment.
If you would like to talk to this CNN reporter about your experience please email me and I will give you her contact details.