TOPIC:

If you would like your voice heard please post your views here. These will be presented at a high level meeting between the Buyers Club and key decision makers in Canberra on Friday 6th November.

Make it short and sweet. Write anything you like but some suggested topics are:

• How Hep C has impacted on you and your family
• The mental torment of knowing cure exists but is unavailable
• Your views on the Buyers Club and parallel imports being facilitated by others
• Your views about Big Pharma pricing
• Your suggestions about what Government can do to help (without breaking the budget)

And of course if you've accessed these generic medications and attained cure..... that's a pretty compelling story too.

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 after injuries in a motor vehicle accident left me with a raging opiate addiction, that was 22 years ago, I haven't told my family or friends ...too embarrassed and ashamed I guess, I moved 500 km away from home and for the last 15 years I've lived a life of seclusion and misery, I don't expect the government to pay for my mistakes, but please don't stand in the way of me or many others being able to finally get an effective treatment at our own expense. I'd just about lost all hope until I found FixhepC. I'm grateful to the scientists who developed these amazing drugs but very scornful of the price tags that are being imposed.

Thankyou

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.

I take full responsibility for my misspent youth, and have paid the price in many ways over the past 30 years. Single and childless, HCV has been my shameful secret, although I have lived a full life with contributions and responsibilities to the community. The first real discussion with my parents about being HCV positive was after placing the order with the Buyer's Club, ie, when the solution was in sight. Waiting for the cure to list on the PBS has been agonisingly frustrating, and reinforces that we Heppers are marginalised. I was prepared to go to India or anywhere else to access the generics. Thankfully, the Buyers Club assisted me to import, test and compound the generics, and I applaud the professionalism, compassion and initiative of Dr James Freeman and his team. It's Day 19 of treatment and the mental and physical improvements are significant and magnificent. A huge weight has been lifted. I can return to the workforce. I have a future.
In my opinion, the obscenely greedy Gilead is not only acting unethically but criminally, and Big Pharma need to be controlled so they cannot hold governments to ransom like this, at the expense of human lives. The Australian government (and US & UK & ?) should save lives and money by dealing direct with Mesochem or similar reputable providers 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.

I refuse to apologise for my youth and I take responsibility for my actions!! I will not take on shame by ignorant people who may judge me, whilst some make a fortune from my illness. Like most people who are older, when I look back on the past I would change many things and having Hep C is one of them. I have had HCV 40 years and have been diagnosed for 26 years. Since diagnoses I have been unwell. I have had many periods when I have been unable to work or have a social life and it has impacted on my relationships.
I have forced myself to not lie down with this illness. I participate in life & community. I have dragged my body around when all I've wanted to do was give up because I am so fatigued, nauseous and full of pain. I never went on Interferon as I saw the consequences of the drug and decided I would cure myself through alternative therapies. That didn't happen!! Last year I quit my part time job as I became very unwell. The HepC progressed and I was facing taking Interferon. I anguished over this decision and thought I would wait for the availability of the New Drugs on the PBS. The stress of waiting started to take its toll & impacted on my health. I started to get anxiety. I can not afford to wait for the Governments decision. I am going through the Buyers Club and I feel absolute relief that I am taking my life into my own hands. I am awaiting the arrival of the drugs and should be on treatment next week. In 12 WEEKS I will have a cure!! I am indebted to Dr James Freeman & team and his compassionate & tireless efforts to help myself and many many others. The Buyers Club has given HCV suffers a sense of hope that they are cared about and they have an opportunity to cure themselves. Why do you think the Buyer Club is so successful in such a short time? People are desperate and he is listening! I urge the Government to support HCV suffers and come to some decision now. To end this stalling and come to an agreement with Gilead. Listen to the people!!

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 contracted HEP C after a blood transfusion. This occurred after I had an accident serving with the Army Reserve.

The Red Cross told me to take a hike and acted like a hit and run driver. Their Queens Counsel told me if I wanted to pursue them they would bring in expert witnesses from the USA and when I lost they would take me for their Court costs. NSW Health Minister did not want to know then, and current one (in opposition then) could not be bothered replying to a letter I sent her.

I took the big hint and took a hike and got on with my life. I have worked full time since then, and after a HCC was re-sectioned, and I still intend paying my way. I am/was lucky my health and qualifications were such I could.

The option of the importation of these drugs is legal so I expect there was some reason for this - don’t fiddle with it. The Australian Government is there to represent and protect the interests of all of us. No one showed any interest in me in the 1990’s; don’t start showing any concern now that some ugly American company does not know that when you have had your fill, you get up from the table and leave some for someone else.

I suppose I can afford the costs associated with importation; subsidising the importation for reasonably priced medications for the those who cannot seems a ‘no brainer’ to me.

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

So the blood transfusion I had in 88 at a Sydney hospital may have been the culprit ?

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

Bloot wrote: 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

Yeah that's my concern too Bloot.

All they have to do is tweak a small element of legislation and groups like the Buyers club cease to have a legal avenue.

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...

Dear Australian Government,

* Even for people who are "not very sick with HCV", the disease comes with a very high before-treatment cost, through mental torture and wasted time. Thanks to new DAAs, the concepts of "patient support groups", "educating patients", "managing hepatitis C" are now all obsolete. All that remains is to treat the cause of the problem, not the symptoms.

* Ware-housing patients and delaying effective modern treatments has no medical basis. The prices set by Gilead have no economic basis. Gilead's arguments about future cost-savings compared to treating terminally ill patients is breath-takingly immoral. Treat the cause of the problem, not the symptoms.

* Please remember that whatever price Australia might fix with Gilead, there are many millions of people in this world for whom even $1000 per treatment is hopelessly out of reach. Treat the cause of this problem, not the symptoms.

* Please, please, please do not negotiate with Gilead. Just issue a compulsory licence for the products that they bought-in and tell them the royalty Australia will pay.

* Please, please, please, never sign anything that allows a manufacturer to segment the world market. This encourages corporate monopolies. When medication is concerned, this encourages corporate evil. Treat the cause, not the symptoms.

* James Freeman and FixHepC are leading the way back to sanity. Please support their efforts to treat ANYONE who has HVC at a reasonable cost, despite the best efforts of Big Pharma.