1st December 2015
Hospitals in Australia I would not take my liver to:
Yes its a silly title and its mostly for Australians but it really gets up my nose that there are hospitals all around Australia that are still blocking their Hep C patients access to generic Hep C meds.
These are the hospitals where the specialists have either been telling Hep C patients to wait, wait, wait or, even worse, they are still treating people with Interferon and Ribavirin.
In my opinion the worst of these is the Princess Alexandra Hospital in Brisbane
Next worst is probably a couple of liver clinics in Sydney and the Coff Harbour Liver Clinic
A classic example of how these hospitals and their staff work is found in this email conversation I had with a patient from one of these two hospitals. It began in early September 2015:
I saw your story on ABC and would like to get these drugs as I have
suffered hep c for 15 years, how would I get these drugs?
I am currently on a waiting list but this has been taking for ever, I
have gone through a couple of trials and little success with interferon.
Can you help as I saw you can get this posted,
Once again I very much appreciate you taking the time to help me,
Thanks for your email.
The main issue when considering your options for treatment is your genotype.
As you most likely know the Sofosbuvir/Ribavirin treatment at best only has about a 68% success rate for genotype 1.
Currently Sof/Riba is the only generic Hep C med coming out of India, its a good option for G2 and G3 but you may also consider generic Daclatasvir from Mesochem in China which is a good option for G3 if combined with Sofosbuvir.
Generic Harvoni is expected to be available in India in December this year, this is a better option for G1 than the Sof/Riba.
Please feel free to write if you have any questions
p.s. Please remember that I am not a medical doctor and any advice I
give is purely based on my own personal experiences and observations.
Please seek professional medical advice on treatment options.
I have an appointment with my doctor on Monday night, I will have the information I require for my illness and will be in contact with you shortly after that.
On 25 Sep 2015, at 11:06 pm,
Good Luck with the doctor #####
Sent: Wednesday, October 7, 2015 11:04 AM
To: greg jefferys
Subject: Re: Information on India #####
Our system takes its time, after several calls and a week of waiting I was
finally able to get a nurse to contact me and give me the details I need,
G 3A is my type,
I'm a relapser
Liver is in good condition
Low viral count,
They say by December they will have Harvoni approved for my use,
What is your opinion?
On 7 Oct 2015, at 1:47 pm, greg jefferys <firstname.lastname@example.org> wrote:
Ask them to assure you in writing that they will have Harvoni by
December... I will bet you $100 that they will not.
I bet they will not even guarantee next April, or next July. Wait wait wait... I've been hearing that song a long time, too long.
But I hope I am wrong
Finally in December this email arrived
Sent: Wednesday, December 2, 2015 6:41 AM
To: greg jefferys
Subject: Re: Information on India
Yes this government is useless!
I would like to go ahead and source these drugs from you if possible,
Yes sadly here we are in December and nothing on the PBS and the hospital has nothing to offer you. And you know you are not alone... all around Australia specialists and liver clinics have been telling patients with Hep C to not buy generic Hep C meds but to wait until December for them to be listed on the PBS and here we are in December and those same hospitals and clinics are telling people to wait until February.
And you know in February they will be telling people to wait until April and
in the intervening months some of those people they told to wait would have
got cirrhosis, or liver cancer or died!
Please find info attached on the generic Daclatasvir situation, the best treatment optrion for G3 according to the latest reports. As you will see there are several options now, including getting it from India or Australia. In contrast to your hospital I can promise that you will have these medicines in 7 to 10 days max.
After writing and posting the above spleen venting rant I started to wonder if I was not being a bit harsh on the doctors in Sydney?
Then to my astonishment a few minutes later I received a phone call (which is very rare) from a woman who had been a patient at the Sydney liver clinic for more than two years.
She told me that after two years of being told to wait and wait and wait for the new Hep C meds to come onto the PBS she finally decided to use Indian generic drugs to cure her Hep C.
She did the right thing and flew up to Sydney to discuss this choice with her Doctor. This involved considerable time expense as she live a long way from Sydney but she felt it was the right thing to do.
Well her doctor's response left her stunned. He abused her, told her she was being irresponsible, that she would lose all support from him and generally berated her.
Now this is a mature, well educated woman who works in the health industry and all she wanted was to be cured of her disease, which this clinic was not doing.
She was stunned!
She stood up and walked out without a word, on the verge of tears. But this is a woman who will not be bullied!
She had made up her mind she was going to get cured and so she would.
She left that liver clinic and went and saw another liver specialist at another liver Clinic that actually cares about the health of its patients (its one I have regularly praised in this blog). She immediately got a prescription for Indian generic Sofosbuvir and Daclatasvir and even as I write this she has begun her treatment. By the New Year she will be at "no virus detected" stage.
Was I being a bit harsh on the Liver doctors in Sydney?
I don't think so!
Coffs Harbour Liver Clinic
Over the past few months I have heard so many terrible stories about the Coffs Harbour Liver clinic that one would think we were dealing with a 19th century institution. I have heard of them bullying doctors who have prescribed generic medicines to people with Hep C. I have heard of them refusing to monitor patients who have opped for using generic Hep C meds to find a cure. I have heard of them banning patients who demanded their right to choose their own medical treatment using Indian generics.
Here is another.
Sent: Thursday, December 3, 2015 10:48 AM
To: greg jefferys
Subject: Re: Help sourcing medication hep c genotype 3
Hi Greg, Thankyou again for your list of doctors. My doctor is ######. I've never really been happy with her for many reasons(between us) but I keep persisting in saying I want to get rid of hep C. She has now finally sent me to coffs liver clinic after more than 3 years of constant blood tests etc . I told the clinic Hep nurse my doctor was supportive of me wanting to get the sof and Dac. The nurse at the clinic was not very interested in anything I had to say and just spoke over me making me feel very upset. I asked questions but was cut off every time. I did manage to find out that the Coffs hep C clinic is using Vickera Pak . I had Sofosbuhvir and Daklatasvir written down the nurse screwed her pencil into the words and said "that's the one we want".(softly, like to herself) She kept telling me my liver is not that bad. It was obvious she was not being honest with me. So after the session she walked out and I had to say "can you please make me an appointment to see the specialist" So now I wait until January and have been told to have MORE blood tests an an eye examination?. My doctor refuses to write a script until I have seen a the hep C specialist in Coffs clinic saying "I have to cover myself".I asked why and she got angry with me. So it just goes on and on like a merry-go-round. I made an appointment to see Doctor ##### who was on your list but it is not until January. the doctor you suggested from Toormina/Sawtell will not take any new patients. I was so happy when I heard of the new drugs but now I'm just miserable again because I feel like a puppet. I am on a disabled pension so I can't afford to take a trip to India. And I had already taken a bank loan for the Sof/Dac.and spoke to Adam on several occasions. Why do they have to make it so Darn hard. I feel lost. One day I hope to send you an email with some happy news. I do thankyou for your help and whish you a happy healthy xmas.
PS-i' love reading your blogs and the success stories, I'm really happy for those people.
The end result is that I organised this person with an appointment with Dr Sandra Cabot in Sydney and hopefully he will begin his treatment before Christmas and will be at " no virus detectable" stage when he sees that specialist in January!
4th December 2015
After my little self righteous burst indignation I am pleased to be able to share some more good news.
The Liver Clinic at St Vincent's Hospital in Sydney will now monitor patients who are having their Hepatitis C treated with Indian generics.
This is a big breakthrough as it is one of the three most important liver clinics in Australia.
The weight of numbers and the undeniable results being achieved every day, all around the world, are making a big difference and the status quo is changing. I predict by this time next year every person in Australia with Hepatitis C who wants to get their Hep C cured will have access to affordable treatment.
Dare we dream that in a few years Australia will be the first country on Earth to defeat Hep C on a national level. It is possible.
This leads to the topic of the USA and Canada.
Everyday now more and more people from the USA and Canada are flying to Australia to access affordable Hep C medication. They are flying here because their own governments are blocking their access to treatment. They are flying here for the cure, flying home with the cure and getting cured.
Every day now we get news of someone in the USA reaching no virus detected phase.. usually after only 4 or 6 weeks of treatment.
But wait there's more!
We are organising shipments of generic Hep C meds from India, we are doing it legally and we are getting scrutinized by the FDA and we are getting through. So far every parcel of generic Hep C medicine we helped organize for the USA has made it to the patient.
Sometimes it takes a small battle with the FDA. Sometimes some pleading. But we give patients 100% support in everyway we can and, so far, every shipment has got through.
Maybe over the next few months the FDA will start to change its attitude too. Maybe it will get easier and easier to send generic Hep C meds to the US by mail order?
We hope so.
If you want more info on accessing affordable generic Hep C meds from reliable sources please feel free to email me. I am happy to give contact details and other information for free.
6th December 2015
Well it has been an interesting couple of weeks with a steady flow of people from all around the world coming to Hobart to pick up their Hep C meds.
This week I met up with two guys from the USA and a lady from Ireland. They all decided to combine the medicine collection with a week or two of Tasmanian holiday time.
Tasmania is a great place to start treatment, lots of fresh air and open spaces. One guy hired a little van and is driving around and doing wilderness walks. Another lady is staying in a self contained Teepee up in the mountains and will spend her second day of treatment doing a tour of one of Tasmania's great limestone cave systems.
They have all come to Australia because their own governments have abandoned them, have blocked their access to the medicines that would save them, would cure them. So they have come to Australia, to Tasmania to get their cure and start a new life free from the curse of Hepatitis C.
And so it is that Tasmania leads the world in providing people with access to affordable medicines. Every day we help people from all corners of the Earth to access affordable Hep C meds.
If people can not afford to come to Australia then we give them information and contacts for getting the meds from Bangladesh or India or China. Information of reliable suppliers of genuine medicines.
And every day more people are coming back to us with news that they have reached " NO Virus Detected" stage in 2 or 4 or 6 weeks.
This is no longer one or two people each day, it is 50 or 60 each day and soon it will be hundreds each day.
So despite the efforts of Big Pharma to hold us to ransom we are getting the medicines and getting the cure.
Here is a link to a news story Dr Freeman and I did today. The Hobart Buyers' Club
The International Situation
Now days more than half my emails come from overseas.
The interesting thing that I have noticed is that the people from poor Eastern European countries like Romania or Serbia and people from poor South American countries like Brazil or Ecuador are in the same desperate need as the people in the USA and Italy. They have Hep C, their government will not assist with the obscene cost of the drug and they can not afford to travel to India to get it. In places like Serbia and the Ukraine their governments prohibit the importation of generic drugs. Obviously their politicians are being paid off by Big Pharma. In some countries like Romania they can import the Hep C medicines but the cost even of the generic version Harvoni represents about six months wages for the average person in Romania.
The same applies to Brazil. Yet people will be well and will borrow money from friends, family and even the bank to get well. I try to help in a small way by providing people the meds at cost but even that is too high a price for many. It is a sad thing and I do not know how the people who run companies like Gilead and Bristol Myers Squib can sleep at night knowing that their pricing policies are causing so much suffering, misery and death.
Still we try to help where we can and we see the results.
An email received today from Brazil
You may remember me, you help me get the medicines from India, I am from Brazil and have bought the medicines with your intermediation. I have just taken the results of blood test after 30 days on treatment (SOF/RIBAV), and AST/ALT came into normal range (27/19) and the virus is not detectable any more (the last result before treatment showed 4.400.000 UI/ml). I "had" (don't have any more) Genotype 2, and I wish I can say that I am cured in a few months.
Thank You again for your help and congratulations for your recent cure.
So this was a story that had a happy ending.
Below is another email that I received today... a story of refusal to be beaten by disease and greed.
Please note that the AbbVie V-Pak did not work. Now if you purchased a car or a computer and it did not perform as promised you would expect the manufacturer to refund your money but if you buy a drug treatment from AbbVie and it does not work then they keep your money and wait for you to die.
Let's face it Big Pharma is a corporate world that is populated by people who are motivated by greed and feed on human misery and suffering. They are truly the scum of the Earth and the politicians and Hep C advocacy groups who have been bought out by Big Pharma are just as reprehensible.
I read your forum about helping people to cure HepC and I must say you`re very noble person in this world.
My story is very simple I was diagnosed with HepC in 2013 (Genotype 4, no Fibrosis) and waited long time for medication and bought Viekarax (AbbVie for 32 000 EUR) and underwent Viekarax + RBV for 3 months only to get my last results to see that it did not worked our for me...
In my country 32 000 EUR is huge amount of money I borrowed money from bank for this and now I`am more or less with payments to bank with no results.
My doctor says that I must try Harvoni or some other treatment plan that contains Sofosbuvir. In my country Harvoni costs 60 000 EUR the amount of money that I can only dream...
I still have to the bank for Viekarax 8 years, it pains me a lot to understand that I have to pay for something that did not worked out...
In my country government does not pays for Hepatitis C medication only for old treatment plan (Interferon + Ribovirin) which in my case will not work out.
I read that there will be available generic Harvoni do have some solid lead to some pharmacy or place where I can buy that ?
I will manage to collect required money for generic version.
Thank You a lot!
9th December 2015
A follow up to the above email sheds further light on the general greed and evil nature of Big Pharma. Here is AbbVie a huge multi-national drug company making all sorts of promises to sick people that their Hep C drugs will cure this man's Hepatitis C. On the basis of these promises this man borrows a huge sum of money from the bank and buys the AbbVie treatment. When the treatment fails he is given the brush off. And of course they keep his money even though their product did not perform as promised. Companies like AbbVie and Gilead are ghouls feeding of the ill fortunes of others, worse than parasites. The people who work for them, who assist them in their foul practices are complicit in the same evil.
As we live in the world where all is based on money I'am not in best situation.
Yesterday spoke with local office of AbbVie about refund they refused me. They asked me to provide evidence that I did all the pills according to treatment guidelines. How can I do that, have no idea. I felt that they found very quick reason to get rid of me.
One friend told,me that I can hire lawyer for this and try to go to court, as they promise 100% cure rate for genotype 4. But court would take years and I can't afford lawyer.
Finally the Indian Generic Harvoni Price
Well it has been a long wait but today I received the official prices for generic Harvoni being shipped out of India.
The good news is that it will be a little cheaper than expected with price varying between US$1,300 and US$1,500 for a 12 week treatment, depending on the supplier and shipper.
So if you are ordering generic Harvoni from India the absolute maximum you should be paying is US$1,500 including shipping and all other costs.
December 13th 2015
A brief summary of the Generic Hepatitis C Medicines Situation
Well we are approaching the end of the year and many things have changed in the past six months so I thought I would summarise things.
Indian generic Harvoni
Harvoni is a combination of two drugs made by Gilead. Harvoni is Sofosbuvir 400mg and Ledipasvir 90mg. It was made specifically to fight Hep C genotype 1 and is most effective against this genotype but it is not much better than other combinations such as Sofosbuvir + Daclatasvir. Gilead has spent a lot of money promoting Harvoni so there is a perception that it is THE drug for genotype one but the reality is that it is probably only one or two percent more effective than Sofosbuvir + Daclatasvir.
That said it is still a very good treatment for genotype 1.
Branded Harvoni retails at around US$90,000 for 84 tablets in Western countries such as the USA and in Europe.
Licensed generic Harvoni was released in India this month (December 2015) and retails in India for about US$1,250. It can be purchased from many online resellers and shipped to just about anywhere in the world but the prices vary greatly as soon as it is resold to Westerners.
The correct price for Indian generic Harvoni shipped by DHL to anywhere in the world is around US$1,500. However I have seen numerous prices as high as US$3,500. It still astounds and saddens me that people can be so greedy.
So if you are considering purchasing generic Harvoni from India then you should not be paying much more than US$1,500. Sure if you have a reliable supplier who charges US$1,600 or even US$1,700 and guarantees that you will receive the medicine without any problems then pay the little extra but don't get ripped off.
I can certainly help you get generic Indian Harvoni shipped to you for less than US$1,500 from very reliable and honest suppliers.
Along with the release of generic Harvoni in India came the release of licensed and unlicensed generic Daclatasvir.
Daclatasvir is made by the pharmaceutical company Bristol Myers Squib. Combined with Sofosbuvir it is a highly effective treatment for all genotypes of Hep C and it is MUCH cheaper than Ledipasvir.
The advantage of the Sofosbuvir and Daclatasvir combination treatment for Hep C is that it has a very high cure rate for all Hep C genotypes. This means that if you live in a country where the cost of getting tested for genotype is extremely high you can simply order Sofosbuvir and Daclatasvir and take it knowing that you will have a better than 90% chance of curing your Hep C regardless of the genotype. For Genotype 2 and Genotype 3 the cure rate is above 96%
And Sof+ Daclatavir is much cheaper than Sofosbuvir + Ledipasvir.
The reason for this is that Daclatasvir is much easier and cheaper to make.
A 12 week treatment of Daclatasvir will cost you about US$350 compared to about US$1,000 for Ledipasvir.
This means is you buy a 12 week treatment of Sofosbuvir + Daclatasvir it will cost you about US$1,300 delivered.
So if you live in Romania or some other such place where the relative wages are low then you save on the cost of the genotype test and the cost of the treatment, saving about US$500 in total.
The Sofosbuvir story is pretty well told already. Sofosbuvir is still the foundation of modern Hep C treatment and other drugs are added to Sofosbuvir to enhance its performance.
Sofosbuvir is selling in India for less than US$800 for a 12 week treatment and can be purchased online, including shipping and other costs for around US$1,000.
I am happy to assist anyone wishing to fly to India to buy these Hep C drugs by supplying the names and contact details of honest and reliable suppliers in India. I do not charge for this service nor do I get any commissions or any other financial reward from the people or hospitals that I recommend. Flying to India is a good option if you live in a country such as the USA, Serbia, Italy etc that makes it hard for its citizens to import by mail order.
If you live in a country like Australia or the UK or Romania etc where it is easy to import Hepatitis C treatments by mail order than I can also help you with this.
15th December 2015
Well I am determined to finish off the season on a positive note. There are so many good things happening now.
Generic Harvoni and Generic Daclatasvir coming out of India and Australia and Bangladesh.
More and more doctors and hospitals coming on board in Australia and that is filtering through, slowly, to the rest of the world.
For those of you who are thinking about starting on generic treatment for your Hep C the emails below may help you make the decision. Every day I get these wonderful emails from very happy people reporting their progress. And you know I have not had even one email where the person is disappointed with the results.
Finished the 3 month course of medications and am totally clear of the Hep C
on all counts. I will look at a way of thanking you , as people like you
would make the world run in harmony and unity as it was meant . Thank you a
thousand times and may the universe smile on you.
Dr. Freeman, Greg, Adam and Paul:
I just wanted to let you all know I just got word from my Doctor who said the 4 week test showed "undetected" and wanted to thank you all for your kindness and support in helping me access these medicines. Chalk another mark on the board for another US traveler who got cured from generic medicine through your help in Australia. Adam, thanks for helping an 'out of town' customer too,
It still seems a little unreal, even though I knew from all I read that its supposed to work, I always had that nagging fear that for some reason it wouldn't work for me...well at least so far it has,
Thanks again all of you, I also posted on the board too and intend to keep my presence there to do what I can to help others they way the board and all of you helped me.
The email below is particularly potent because this patient had been told by his doctor that he would not live to see Christmas this year. He and his brother contacted me and then went to Chennai and purchased the generic Hep C treatment there. His brother wrote to tell me that not only was he still alive but hale and healthy!
Hi Greg, just to touch base with you. ##### has been on this medication for
2 months now all is going great. But we have a small problem the specialist
from R P A said he my need another 3 months supply. Greg if this is can we
sauce it with you. Not real keen to fly back to Chennai. But in saying that
I would if I have to. He seen the specialist today and the specialist said that at this rate he could live for another 10 years. He's going great for someone who should not have seen Christmas this year. Thanks to you Greg your the life saver and I still have my twin brother
I am sure you are very busy, keeping up with the roll-out in India... but thought i would get you a quick update....
One of the surprising improvements of this treatment has been of a psychological and emotional nature. I was really down in the dumps before treatment, for whatever reasons, and now i am back to my effervescent personality - YEAH!
Week 5 of treatment and it seems (i hope) that the worst is all behind me. Insomnia continues to be an issue, but i have had insomnia since i was about 8 yrs old, truth be told.
Doc did run a liver panel and a blood panel... no viral load. She was pleased with the test results and said other than a slight bit of anemia (possibly), i was good to go. She does not feel it necessary to run viral load until 12 week point.
another thank you email my name’s #### I started treatment 6th Nov now clear
of hep c can’t thank you enough for your help ! I’m over the moon & feeling
great ! can’t believe it all happened so quick it’s amazing what you have
achieved ! I’ll be getting on with my new life now good on ya Gregg ..
Hi greg, just had my viral load done after first four week and its undetectable, thanks so much. ###### :)
20th December 2015
Announcement by Australia's Federal Health Minister that New Hep C Medicines are to be listed on Australia's PBS. Is It Just Smoke and Mirrors?
In Australia we have a government funded health insurance scheme call the PBS (Pharmaceutical Benefits Scheme). This scheme subsidizes various approved medications so that residents can purchase them at affordable prices.
Hepatitis C treatments using Interferon + Ribavirin and Simeprevir have been approved on the PBS for a number years and are essentially free to people approved for treatment. PBS approval for these two treatments has been triaged and about 3,500 people have been treated each year on the PBS. The cost of an Interferon + Ribavirin or Interferon+Simeprevir treatment was around $50,000. The success rate with these treatments was around 60%. Because of the low success rate of this form of treatment and the terrible side effects Interferon was being phased out in 2015 and my understanding is that the treatment was due to cease entirely in 2016.
In the mean time Federal Health bureaucrats have been negotiating with Gilead and Bristol Myer Squid for an affordable purchase price for the new generation Hep C treatments that would replace the Interferon based treatments. Gilead was holding out for a price of about $80,000 per treatment and the government was saying that it would not pay more than the $50,000 it was currently paying for the Interferon based treatments.
Then along came the flood of India generic meds onto the Australian market. Gilead must have seen that its negotiating position was rapidly slipping as more than 100 Australians every week started treating their Hep C with imported generic Sofosbuvir and Daclatasvir and Ledipasvir.
At the same time the Hep C situation was getting a lot of news media attention and pressure was being put on the Federal government to make the new Hep C treatments available to all Australians with Hep C.
Then yesterday the Federal Health Minister sent a press release around the Australian news media, which was published without question by our news outlets. There was no questioning of the figures, no analysis of the claims. All critical commentary was totally absent because it was announced with much fanfare that the Federal Government had made $1 billion available for eradicating Hep C from Australia. That Australia would be the first country on Earth to eradicate Hepatitis C.
I was sent a copy of the press release by a friend in the news media and asked for a comment.
My comment was "This reads like rubbish, there is no costing and no numbers."
My friend in the news media was appalled by my cynicism and accused me of be negative about what was a great thing. The government was doing a great thing for people with Hep C. I hope this is so and I am wrong and he is right but perhaps this " new money" for Hep C is just political smoke and mirrors.
Firstly if you go past the headlines and read the details it is actually one billion to be spent over 5 years, about $200 million a year, or the same amount as was being spent already each year on treating people with Interferon. This means in real terms that the PBS scheme will treat about 4,000 people each year, or less than half of the 10,000 new cases every year if Gilead has agreed to a figure of $50,000 per treatment. If it is half that, say $25,000 per treatment then the $200 million dollars per year may almost cover each year's new cases of Hep C in Australia.
Every year there are around 10,000 new reported cases of Hepatitis C in Australia.
Last year about 4,000 people are treated with Interferon based treatments in Australia, this has been the case for the past five years.
So over the last five years this already cost the government 1 billion dollars.
So this supposedly "new" money is not new at all. All this one billion dollars does is shift the spending from Interferon to the new DAAs.
Whilst it is very good to see the end of Interferon treatment at best this money will only treat the annual increase and will do nothing to reduce the overall number of people with Hep C. And it is very likely access will be triaged.
If it was not triaged the entire one billion dollars would be totally used up in two years just treating the years new cases plus another 20,000 people from the existing pool of people with Hep C. So it would have no impact on the remaining 200,000+ people who have already been diagnosed with Hep C.
So it seems to me that this is a sad, sad cynical case of political spin in response to the publicity that is being focused on the Hep C issue.
The truth is that the Federal Health Minister Susan Ley actually refused to speak to Dr Freeman when he flew up to Canberra to discuss the issues surrounding Hepatitis C treatment with her a month ago.
I really do not want to sound ungrateful because I am really happy for the people who will be able to get access to these meds but the reality is that most people will not get access and access will be heavily triaged as is the case in the UK where the government there pulled the same stunt earlier this year.
I get at least two or three emails every day from desperate people in the UK who have been refused access to the NHS Hepatitis treatment scheme "Because they are not sick enough."
I sincerely hope this will not be the case in Australia and that my cynicism is unjustified and that in five years everyone who has Hep C in Australia will be cured.
I hope that is what happens.