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

Universal clearance in our time.

It’s the sort of project that George Soros Open Society Foundation might help you with
https://www.opensocietyfoundations.org

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,

Deb

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

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.

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.

Peeee

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.”

P.