emo Would you like to be part of a social movement?

6 years 8 months ago #734

Meanwhile Gilead stocks have been downgraded due 'to the hullabaloo over high drug prices'. :woohoo: :woohoo: :woohoo:


NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24. :-)
A thousand thankyous to Dr James and the amazing FixHepC team.
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6 years 8 months ago #1138

I can help looking up info if people are on the move, good with a comp and Internet etc etc
Pretty good on a computer.
Once I'm better I can help more.

Wishing everybody well :)

GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

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6 years 8 months ago #1146

I'm in

Diagnosed with the filth in 2002
Two unsuccessful battles in the interferon war of attrition
Almost beaten into submission between 2008-2014
Finally got the good stuff in 2015 - awaiting SVR
Currently releasing my inner activist. GRRRRRRR!

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6 years 8 months ago #1178

Universal clearance in our time.

It's the sort of project that George Soros Open Society Foundation might help you with

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  • emilio
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6 years 8 months ago #1183

I'm willing to meet and greet in Sydney for anyone not wanting to fly direct to Tassie. I'm happy to help anyone out who needs some down time and accommodation My partner Denise and I have lots of room here and could do this for anyone who is stretching their budgets to the max. Hopefully this will be all sorted soon/down the track but until then happy to help. Em

Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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6 years 8 months ago #1311

We're not shy, so we asked the FDA

"If a drug (Sofosbuvir) is approved in the USA, however, too expensive for consumers and not covered by insurance, can the patient import the drug from another country? Would affordability qualify as a reason to address availability in the USA?"

Their answer....

"Unfortunately, you cannot obtain Sofosbuvir through personal importation because the drug is approved and available in the U.S. Although I understand how the price of the drug can be an access barrier for you, affordability is not considered when the Food and Drug Administration (FDA) is determining if a medical product can be personally imported into the United States.

I hope this information is helpful. Contact me if you have any questions or concerns.

Take care,


Deborah J. Miller, Ph.D., M.P.H., M.S.N., R.N.
Health Programs Coordinator
Office of Health & Constituent Affairs
Office of External Affairs
U.S. Food and Drug Administration"

I say what are they going to do? Throw everybody who buys generics in jail? Because we have 233,000 veterans with Hepatitis C (180,000 diagnosed the rest undiagnosed) under the care of the Veterans Administration and as of June they had only treated 39,000 (only 8.000 with the new meds) and they say there's no more money to pay for treatment.

In the 1980's people with HIV started Buyers Clubs to sell supplements unapproved by the FDA in an effort to improve their conditions. The FDA finally allowed it when HIVrs held protests and had one where they laid on the floor with tombstones above their heads that said "Killed by the FDA", etc.and it made the national news.

Unfortunately, people with HCV are not as organized.

Anyway, I see why I was invited to this site. I'm known for attempting the impossible, out in the forums where my shield of "good nurse" doesn't protect me.

Mesochem is selling both sofosbuvir and Daclatasvir (both powder form) without a prescription. $1800 American dollars for both. Lots of people in the forums are using them without a doctor. That worries me. Nobody should treat on their own. Plus they're doing very creative things when they can't find a compounding pharmacy to make the capsules for them. One woman said she puts the powder in a tablespoon and adds a little water then drinks a glass of juice to get rid of the taste. Others are getting different size capsules, some add fillers, most don't.

Re side effects:
We lost one on Sovaldi+Olysio, liver and kidney failure and a post transplant patient ended up on permanent dialysis (had a GFR of 23 at baseline) and tests showed he had a heart attack during treatment with Harvoni. One forum had a heart attack (Sovaldi=Riba) and another had a man who had chest pain for the last 3 weeks of treatment and refused to stop (his doctor gave him Tramadol). He was having cardiac symptoms a few days after finishing treatment. I sent him to the cardiologist.

Plus I'm seeing quite a bit of retinal damage. Well recorded because some of the people had eye exams before and after treatment and their vision got worse (studies did eye exams and they did them for a reason). One of ours had a detached retina a few days after finishing treatment with Harvoni. So far people taking generics are complaining of only minor side effects. Some are not talking, I guess they're taking the 5th. ;)

Pee Pee Price :lol:

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6 years 8 months ago #1312

Since I started self-treating with DAA's that I encapsulated myself (well, the Dac anyway), I've variously: had a heavy cold; sustained an assortment of cuts at work; had a dose of loose bowels after eating a very spicy curry. It's almost certain that all of these are directly attributable to the meds that I'm on. I mean: People only get sick and injure themselves when they're on meds, don't they? It has to be the meds. Definitely. Not only that, my wife and son also had heavy colds at the same time as me, and my wife has had a bad stomach for the last couple of days. Those dastardly meds I'm taking are at it again! They're sneaky.

Last Edit: 6 years 8 months ago by Alsdad.
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6 years 8 months ago #1316

Hi PeePee, Thanks for responding. I haven't spoken with a soul about my situation and I suppose I was looking for a shoulder to whine on. (Bartender tired of hearing it!) I'm prescribing myself 24 weeks of treatment, cirrhotic and all. The medication by itself runs over $8000 a week x 24 is uhm, a lot. Forget about the tests, doctors etc. I figure on 3 choices: #1- steal the meds or enough money to buy them, #2- find the meds at an affordable price #3-just die. Gonna have to go with door #2 on this.. Either the pills or the API's. I think API's are gonna be best choice for me at the time. Through the brain fog I don't remember exactly where it is but it is illegal for a pharmacist in the US to compound these API's. Still gotta go with door #2.
Is curious you mention HIV. I did go to an HIV clinic several weeks ago and they said they would help but appt. would be next year. They did call yesterday with an appt for Monday. Am hoping this is behind door #4. I did mention I am cirrhotic and just feeling pressed about time on this. I am hoping to stir some things up in this country, right after SVR. :)

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6 years 8 months ago #1318

Thank you for posting this. I have updated the side effects page to link back here and added some additional data to it around the ADRs and mortality risk.


One of the problems with this demographic group is age.

At the age of 65 you have over a 2% per year risk of dying, or 0.5% per 12 weeks.

What this means is that if I started a hair brushing trial, and brushed the hair of people in this age group every day for 12 week, and did it to 200 people, one would probably die (statistically) during this period.

Now intuitively we know it was probably not the hair brush that killed them, but they still died while having their hair brushed daily.

Sadly some people will die taking these medications, but when you look at the big picture 10,000 times as many people died last year (500,000) because they did not take these medications, than those who may have died because they did take them (< 50).

Last Edit: 6 years 8 months ago by DrJames.
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6 years 8 months ago #1327

Believe it or not, US compounding pharmacies are okay with making the capsules. People in the UK are the ones having trouble finding compounding pharmacies to do it. One of the pharmacists said they can't do it because their insurance doesn't cover them. Some of the people in the US are getting prescriptions from online docs. You know, those places where you can talk to a doctor for a fee.. Are you close to Mexico? Importing is legal in Mexico.

I used to have a boss who always said, "Pee Pee, there is no such thing as no. There is always a way as long as you don't give up."

BTW, people who clear are reporting the brain fog goes away. So hang in there.


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6 years 8 months ago #1328

Oh come on, give me a break. My score will be on the minus side. :(

Actually, I'm fighting to get 233,000 treated In the group with the highest infection rate, the lowest treatment success rate and the shittiest medical care. So I tend to be over protective.

Pee Pee

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6 years 1 month ago #15360

Dr Sylvestre is passing this message....

"Do you know or work with high risk Californians who want hep C treatment? Then we at the OASIS Clinic would like to partner with you to make California hep C free. It's time to stop talking and start doing.
We are talking active drug users, persons new to drug treatment. Street persons, sex workers, persons with mental illness. Etc. We consider these our people and want to help them.
It will work something like this. We have the medical licensure to treat hep C in anyone who lives in California. We will figure out how to get the hep C meds -- somehow. We will do this for free. Each person referred for HCFC treatment will need a local sherpa. Someone to help us obtain the necessary labs and a local pre-treatment physical exam of some sort. To set up something like a Skype call before treatment to run through the treatment process. And most important, to help them manage their meds and take them on time.
We expect challenges but we'll figure them out. Your challenge is to identify those at the epidemic's ground zero and set them on a hep C free path.
To maintain confidentiality, we've created a secret group called Hep C Free California. We will share with each other ideas, problems, challenges, and successes on that page. It is a secret group, so you can't search for it. You will have to share this post widely and message me or the clinic if you would like to be added to the group.
Time to stop talking. Let's go."


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6 years 1 month ago #15367

Have 2 cents and if is worth 1 cent to three I am nearly double. My little story: no insurance etc. (do have 2 cents!) A while back I knew I was losing it. Don't believe it but must be depression. Stopped at MHMR and was diagnosed as severe. They also want blood test, cool. Liver panel sucked, AST=156 ALT=96 and such. We talked and HCV test came up. Came back positive, not much else they can do about that. Tried an HIV clinic and they helped, blood tests, RNA and all. They have continued to monitor since (they are a St. Luke's affiliate). They now are serious about their HCV program and MHMR has taken an interest and are attempting to begin a program for such. Have another app't there next week, actually both places and maybe can double my pennies there. My point is there are sherpas to be found out there.
As for the monitoring I am scheduled for another blood test next week and then a test for SVR12 in 13 weeks and another at 6 months and 12 months. Anyone in deep S. TX. sharing our issues I can certainly spare a penny.
And a thanks to so many on this site as surely you are worth dollars now! Oh, and thank God for sherpas!

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  • Chattypie
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4 years 3 months ago #26052

Dear Alsdad, the Hepatitis C Trust in the UK provides details of help, medicines, fixHepC and funds PLUS it petitions the government for resources for sufferers. Please visit their site as they were the people who told me about Dr Freeman's website .

< www.hepctrust.org.uk/ >

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4 years 3 months ago #26065

Asldad is about SVR 104 now :-)

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