I was on the verge of retiring from work now I am planning another 5 years after only 2 weeks of treatment !

There is a lot of Hepc sufferers who can afford the generics just don’t stand in the way of them accessing theses meds in a legal fashion

I’ve been trudging in and out of specialists offices and hospitals for years had that many tests I started to feel like a walking pin cushion and only recieved 1 failed treatment regime.

cheers

I contracted Hep C 40 years ago because of silly youthful curiosity – try anything once. I went on monotherapy in 1990’s with no success. In 2007 I went on combination therapy with no success. I became genotype 3 non responder. Very difficult to treat. I have since developed cirrhosis which is longer to treat , 24 weeks requiring 3 drugs. While the government is sitting on its hands I developed liver nodules which are soon to be determined if its cancer, and if cancer, is it a treatable cancer? Buying Indian generics was a no brainer to me. What the fuck would you do? LVT has come back reasonably normal after 3 weeks. I am not in a hurry for VL cause I know its going to take 24 weeks if its to be successful. Besides these nodules are enough to deal with. I have $3,000 worth of a cure. In October 2014 I offered Gilead $30,000 for discounted medicine through my local member Kelvin Thomson. Gilead refused. I have no guilty conscience that I am not adding to Gileads profit margin. People need not have this chronic disease. The only known viral cure is here. Put it on PBS now.

Legislation allows for personal importation and the buyers club started what you and no one else would or could do; provide a pathway to cure. Please do not attempt to interfere with this process. It is successful and legal.

I am six weeks into a twelve week course and am now virus free. I feel much better and my liver now works normally. Please do not create barriers for people like me. I can look forward to my new days and have now started to do part time work again.

Please leave us to our cures and concentrate on getting the rest of the people cured. Please hurry, many are already dead.

silent disease, quiet killer

I sadly know people who are suffering with breast cancer or bowel cancer and other life threatening illnesses. I wonder bout my friends – how many have HepC? – I don’t know because it is not up for discussion.

I don’t censure physicians and specialists who work at Liver Clinics or in Gastroenterology but I do think they are kinda apathetic. I have repeatedly been let down by medicos and institutions. If you were passionate or cared I think you would support progressive health movements and choice. I understand why you maybe can’t.

I consider myself to be an honest person. I have empathy for others and offer assistance wherever appropriate. I contribute to society. Know one knows but me how I am and I do the very best that I can.

People that I know would be surprised to learn that I have HepC. They would maybe question how this happened. I don’t know and it doesn’t matter.

There is a cure but not generally available. The FixHepC Buyers Club and online forum have helped me so much. I want to be cured and I don’t want to die for the lack of treatment. I have children, grandchildren and elderly parents and want to spend time with them as they do with me. I am a human being and I am exhausted. I feel isolated and withdrawn and I shouldn’t live have to live my life this way. I need help. I have lived many years on the ‘outside’ presenting as fine.

I live in Australia supposedly ‘the lucky country’. I pay the Medicare levy. PBS where are you? I also pay thousands of dollars for private medical cover.

Doc Freeman has helped. I have ordered my meds through FixHepC Buyers Club, there is no other option and I am thankful and hopeful.

I am surprised Sabrecat that the Red Cross took this stand. I gave the story to a Journo friend of mine in about ’94 that their blood was contaminated with Hep C. It was breaking news and the media ran with this story for about 3 weeks. The Red Cross knew about contaminated blood in 1990 cause I knew a blood donor who had donated for 20 years was told by the blood bank that he had Hep C, which he got in the early ’70’s. In fact it is documented in the latest history of the blood bank. kindly

It is indeed a no brainer

I pay for my own treatment saving the government $85 000
Big pharma aren’t holding heppers and the government to ransom
That’s what i call a win/ win

Unless of course the government wants to pander to Gilead and their shareholders
In which case they prove they have no brain

Mental Anguish and Time Lost from One of the Lucky Ones
——————————————————————————–

I first learned I had HCV in January 2015. I have probably had it for 36 years. It was only detected by chance after I began to be very tired and sensitive to alcohol.

My specialist advised me not to worry because it is quite curable with the latest DAAs. After a few tests, he told me I was very lucky because I had very little liver damage (F0 or F1). And this, despite a healthy appetite for beer and wine. Great! So it will be easy to treat, I asked? No, you are not sick enough for a treatment, he tells me.

… Oh, I see. Well, I think I see…

Since then, I reckon I have spent about three hours a day for the last 10 months learning about the disease, trying to work out if it is really safe to just wait, and trying to figure out how to obtain a cure. I work as a government researcher, and since my working hours are flexible, almost all of that time was time spent NOT doing my real job, but still getting paid for it.

Here is how I wasted my employer’s time:

* learning about Hepatitis C,

* learning about treatments for Hepatitis C,

* reading about how different country’s national health systems pay for HVC treatments,

* learning about the astronomical prices being charged by the pharmaceutical companies,

* learning a new meaning of the phrase “ware-housing”,

* learning how in nearly every “advanced” country treatment is prioritised to F3 or F4 (which is entirely fair, given the prices, but how the heck do the pharmaceutical companies get away with it in the first place? how do governments *let* them get away with it in the first place?),

* reading dozens of horror stories about people who are denied treatment because they are not sick enough (if anyone ever calls this “ware-housing” again I will punch their lights out),

* scouring HCV patient support group web sites (hmmm, are they ALL funded by Big Pharma?),

* learning about drug patents,

* learning which countries have signed patent agreements with Gilead (hmmm, surely patents with Markush diagrams (i.e. chemical wildcards) can’t be allowed?),

* learning which countries have NOT signed patent agreements with Gilead (hat’s off to the Indian patent office!),

* learning about all the countries and organisations who are challenging Gilead’s patents,

* learning about “voluntary licences”,

* trying to work out if there might be a gastro-specialist in my country who will write a script for me (no hope so far),

* trying to work out how to nudge my next fibroscan results up a notch or two (no, no! don’t even think about it!),

* trying to find out if a doctor’s script in country A will be accepted in country B,

* trying to find out if manufacturer X in country Y will ship to country Z,

* starting to understand the evil consequences of “voluntary licences”,

* learning about “compulsory licences” (there is still hope),

* trying to work out how long it might take to visit India and get a treatment there (shit, is it really true/allowed/enforceable to require doctors and pharmacies to provide Gilead with the names and addresses of patients being prescribed their product?),

* trying to figure out if I ever successfully obtain medication in India, will I be able to bring it back home or will I be breaking the law,

… And so it goes on… so many angles, so many what-ifs to think about.

… And then one day I found the FixHepC web site.

What a relief! There is still some sanity in this world. There is still hope. There is even a doctor on the opposite side of this planet who will see me on Skype, explain the options, write a prescription, and point me to a Buyers Club who will help me obtain the treatment. Finally, it is all so simple, so easy. Isn’t this how every doctor-patient relationship should be?

* Trouble is, it seems like THERE IS CURRENTLY ONE DOCTOR FOR 150,000,000 PATIENTS?

But really,… I am actually very lucky because I am only F0/F1. I only went through ten months of fear and uncertainty. I only occasionally have mild fatigue, dizziness and forgetfulness that I could never explain before. I only occasionally feel stupid in meetings because my brain locks up. I only wasted three months of my employer’s time. But no-one will notice the lost productivity. So why should I feel guilty about that? The chances of passing HCV disease to my partner or her family are really quite small, so why should I worry about that?

So really, … I am one of the lucky ones. My story amounts to almost nothing compared to the shit that so many other people have to go through…