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!!

Hello all.

My Meds came into the UK on Friday and I picked them up and started treatment that day.

There was a problem with the Sob they congealed together apparently this happened before
shipment, as yet I don't know why this occurred.
What its means is they are all need prying apart which is time consuming.

I'll update properly over the next few days.

Am happy I have started treatment.

What are the options for a post transplant patient who failed 24 weeks of Harvoni+Ribavirin?

Thank you,
P

Much easier to ask for forgiveness later, than for permission first. Especially when you KNOW what the answer will be before you ask. Nobody is going to arrest anybody for doing what I did. Worst case scenario-yours meds are "detained", you are notified and given so many days to get them "undetained" before they are destroyed. If Customs refused to allow me to have my 90 day, doctor prescribed, insurance denied treatment-I would go ballistic. I'm talking ACLU, NPR, all the networks the whole of Congress and the president would be sick of me. I can see the headlines: "US Customs denies ill US citizen access to affordable cure for potentially fatal chronic disease."
It would become my mission in life to stop crap like that from happening. If those old slave-holding drunks who founded this country could see the situation today with Gilead.........
They didn't deal well with "unjust stuff". We shouldn't either.
All hang together or be hanged separately.
M

Hi James, I'm Puzzled from Buenos Aires, Argentina. Genoype 3a, between F1 and F2 and a very fatty liver.
I was told in this forum that the best option for me would be Sofosbuvir + Daclatasvir. Do you agree? Will I need to add Ribavirin to those two? I really wish not to need the later... but, doctors opinions come first.
I'm seriously thinking about taking a trip to Hobart to get the meds. Checking on the net for flights and hotels, but not knowing how long I'll need to stay there before coming back home with the meds. I understand I have to do it thru the buyers club.
Anyway, probably in ten days I will be able to see my doctor and talk to her about it.
Another question is what medical information I should ask her for in order to do it right.
Will a prescription from her (she is a senior specialist in an important public hospital in Buenos Aires) be good enough? Should it be written in English or Spanish will be Ok?
I'll thank you for clearing out my doubts... Then I would be Unpuzzled...
Best wishes

Unless you have cirrhosis or recurrent treatment failure Sof/Dac should be good for 95% cure rate. I would see how it goes and retreat if you are the unlucky 1, or in the majorit lucky 19.

Don't guild the Lily. Do enough the first time and more if retreatment is needed.

Hi good people,
I am awaiting my Sof + Dac to arrive to go in for the kill against the hep c type 1a enemy that's taken over my body. At present my viral load is 408000 IU/ml , liver enzymes mildly elevated, probable infection time 9 years but as each year goes by the fatigue gets heavier. This puts huge limitations on my productivity as I get exhausted so easily. After all that, if I still have your patience, would it be worth adding simeprivir to the treatment?
Of course with any comments I will only use them as a guide and I am completely responsible for the decisions I make.
Thanks in advance for any input.

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.

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

Hi D,
The first contact with Rachel was a quote from her on the APIs I had requested from Mesochem on Alibaba. I responded and said I wanted them. She responded and said what was the purpose of the order. My reply was that I was conducting research on the quality of generic HCV treatments in order to make treatment more affordable for the financially challenged. Her next query was what organization I was working with or for. I told her I was a reasearcher with the local university and she could ship it to my office there. She said "university on the address, no problem". So I wired the money, had it addressed to me, with CRM after my name in caps (looked good to me....), under my name, I put so & so university, my address and my cell number.
Thats it. Greg said mention research and I spun a little more involved tale than I outlined above, mentioning some associate professors in an eastern European country and so on. Well, I sent the money, she shipped FedEx that afternoon and it was here 4 days later-3 weeks ago today.
Thats how I did it
M

Gilead Sciences Inc. said its two hepatitis C drugs, Sovaldi and Harvoni, generated $4.8 billion in sales in the third quarter, topping Wall Street estimates for global sales of $4.47 billion.

Per-share earnings, excluding certain items, and overall revenue also beat expectations.

For the year, Gilead again raised its outlook for net product sales, this time by $1 billion, and now expects sales to reach $30 billion to $31 billion.

The Foster City, Calif., biopharmaceutical company, which traditionally had been know for its HIV/AIDS treatments, recently has seen its sales driven by its hepatitis C drugs.

Sovaldi and Harvoni represent two of the most successful drug launches ever, marked by their high cure rates, fewer side effects and imposing price tags. However, the drugs face competition from new hepatitis C treatments such as AbbVie Inc.'s Viekira Pak. Meanwhile, Merck & Co. is seeking U.S. regulatory approval for its combination treatment for hepatitis C.

During the third quarter, Sovaldi sales fell 48% to $1.47 billion.

Harvoni, which c ombines Sovaldi with another drug and was approved in October 2014, recorded sales of $3.33 billion in its fourth quarter on the market, down from $3.61 billion during the previous three-month period.

Analysts were expecting global sales of $1.16 billion for Sovaldi and $3.31 billion for Harvoni, according to a note by Evercore ISI analyst Mark Schoenebaum.

Mr. Schoenebaum said investors likely will be listening on the conference call for any full-year guidance on sales of Gilead's hepatitis C drugs and how they are faring against Viekira. Investors also likely will be interested in comments on the company's HIV therapies, drug pipeline and plans on how it plans to deploy its capital.

Overall, Gilead reported a profit of $4.6 billion, or $3.06 a share, up from $2.73 billion, or $1.67 a share, a year earlier. Excluding stock-based compensation, acquisition-related charges. and other items, per-share earnings rose to $3.22 from $1.84. Revenue climbed 37% to $8.3 billion.

Analysts polled by Thomson Reuters expected per-share profit of $2.87 and revenue of $7.82 billion.

I play guitar Emilio but don't perform , not that good. It's great therapy for the brain.

Our treatment situation is quite similar and expect results will be same. I'm in for 24 weeks and probably will do a month of Riba to make sure. In a docs waiting room now waiting for blood test and will put it on them to monitor my treatment.

Cheers

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

Paul-Jarman-facebook wrote:
I'f you have the cash to get the generics I would do so now Zhuk, as Dr John Freeman said in the radio national interview they are living in cuckoo land if they think the new meds will be listed in the PBS anytime soon !

I've been getting the wait it's coming for years now and just been getting sicker and sicker. There is no difference between the generics and the "genuine" meds. The generics work and you will get rid of the disease unless your very lucky and won't have to speak to your specialist again.

cheers

Hi Paul, thanks too for your reply


It really seems to be 'ostrich-territory' with them on this, doesn't it? Bury their heads in the sand against all logical argument...I wonder what my doctor would have said if I'd been facing a cirrhosis diagnosis - you can still afford to wait? I guess she would


As far as financially accessing it goes, I am on a disability pension so those sorts of funds are beyond my reach, however my mother (who is also a pensioner) has said that maybe she could liquidate some investments she has, so it could be doable in that respect. Right at the moment I have another pressing health issue to address, hopefully it will turn out to be the best case scenario and can be dealt with asap - then I will have to start sorting out everything that is necessary to look into treatment. Which seems to be a fair bit heh. I will also run the idea past my (newly acquired) GP and see if she is favourable to the idea.


Just as an offhand question (now my mind is turning over the options seriously!), having read that India will kick off the production of Harvoni around late Nov or December does anyone have opinions on whether it is better to source from China or India? Realising that one comes in tableted form and the other an API.

Alsdad, funnily enough I was just having a good old rant re the NHS and its incredible bureaucracy. It is getting quite frankly ridiculous and putting lives at risks in a variety of departments.
Anyway, will discuss HepC because that's why we're here

I can understand that Drs not warming to the idea of patients self-treating and possibly buying from dubious sources,
However, if someone like Dr freeman, a Dr. has organised testing of generic medicines at a reputable lab and the medicines have been deemed legitimate, then there really is no excuse. The total lack of willingness to look into it and the pure stubborn narrow-mindedness re improving the situation by is just plain immoral. Surely, if they communicated with Dr Freeman and with the option of electonic mail (*rolls eyes*) we have these days (uh hello??) a standard letter could be drawn up by Dr F / The testing lab stating the medicines had been tested and they are coming from a reputable manufacturer (or words to that effect anyway) - the very least they could do would be to monitor patients even if they are tied up with the legalities of patents and they can't prescribe. After all, it is saving money for the NHS patients paying for their own medicines for heavens sake!

With the will and some creative thinking, they could even set up testing here in the UK (uh hello again?) - No. Why? Because big business rules here in the UK, particularly England and shareholders are in high places - I will leave it at that, . They have got the NHS in a vice and they can't get out.

I also find it totally immoral that they have recently been offering not only Interferon to patients but Boc and Telap. (Yes, indeed). It's been a while now that they have stopped Boc & Telap in North America. What are they doing, using up old stock? of medicines that can harm patients and cause long-lasting negative health problems that not only reduce the patients quality of life, but also end up costing the NHS more, when there are now better options available? Arggg! Not one dot of a holistic approach - as apparently joint pain, nerve pain, eye problems IBS etc etc are ''not considered connected to the virus' or the medicines they have been using, even though there are plenty of medical papers written by top hepatologists , gastros and hematologist s saying the complete opposite and are available for patients to read online! We have to learn about this virus ourselves, because no-one else seems to want to acknowledge any of the symptoms we all have in common and most of us suffer that we all discuss on these forums.

Scotland no longer offers Interferon treatments for GT1s - A start at least. Apart from the fact the new treatments are better and more tolerable, Harvoni for Treatment Naive GT1s for 8 weeks is also cheaper than the triple ! - Absolute madness.

Another thing that concerns me, is Drs don't seem to do much in the way of basic observations eg Pulse, BP, Listen to heart, lungs, look in eyes, reflexes etc any more - Why is that? I have been 'looked at' once since being diagnosed 18 months ago and that was by an excellent leading professor of Hepatology who has since retired and who I booked a private appointment with. I nearly cried after that consultation because a medical professional had actually bothered to check me out nearly a year after diagnosis. He noted a slight tachycardia and slightly raised blood pressure noted in a letter to my GP which was sent to a stranger in Wales because the admin in NHS hospitals is a mess. On mentioning to my GP that I'd like him to check my heart out before treating, he told me to 'go on holiday and relax'. No wonder we are anxious when we go to appointments, we are scared to ask for advise or help re anything! We must remember that many GPs are now shareholders and partners in the surgeries, so financing of tests is a personal concern to them these days. There are many recent articles about how HepC can cause a higher risk of heart disease for example. How many of you have had a Dr listen to your heart lately ?

It seems to me that Drs just aren't 'Doctoring' here in England of late. I know there are some excellent Drs and specialists out there, but somehow they are being restricted and I've read some articles which raise this very concern, A recent one was from a cancer specialist who said he felt restricted in trying things that may work when a patient was deemed 'untreatable', and felt like he 'couldn't be a Doctor' - but that's another story.

I have talked to so many other Hepatitis C patients who have become almost phobic about seeing their consultant or GP - Surely this cannot be right? Why has it become like this?

End rant - feel a bit better for it , I think

Big congratulations on your 8 weeks undetected Alsdad and here's to your consultant for trying to raise the issue.