good news for all us geno 1s - and especially for Marilyn!!!

*** sofosbuvir and daclatasvir ***

Me AND Henry AND Billy Vaughn. With me, it would depend on whether or not Medicare will cover it.

I perused this quickly so I may have missed something but it says:

"...a treatment that combined ...sofosbuvir and daclatasvir.... youll be the only one of 7 billion people taking this..."

That's not true...I took those drugs and so did others on my trial.

They make it to be read as if it's so easy to get both of these drugs when Gilead & BMS are not even collaborating to test this combo any longer...

It turns out to be more complicated than just getting each of those drugs and then giving them to your patient because the only way a transplant doctor or hepatologist or even a director of transplantation can get either one of these drugs is by applying to the FDA for both of them through their compassionate access program which is an emergency option of last resort....

The patient also must qualify by being certified that they only have less than 12 or 18 months to live and the other treatments are of no use...

But, that just part of the difficulty in obtaining this emergency treatment because if I remember correctly, the patient must pay for the drugs and the drug manufacturers must also approve the use of those drugs also which i n this case is moot since it has already been done.

So I guess that's what Marilyn, myself and Billy need to find out if that is indeed true about having to pay for the two drugs because I know that I qualify based on my health and Marilyn would most likely qualify as well sing her ILB28 is a TT and doesn't have that much time to wait until the new drugs become approved for use by the FDA & Medicare...

I cannot speak for Billy because I don't know whether or not his condition is as dire as mine and Marilyn's are currently...

I do know this... I'm taking this news article and the copy of that study that was done earlier with Sofos & Daclatsivir on a post transplant patient for the first time and I'm going to break down my liver transplant director's office door and demand that he get these drugs for me to take so that i can finally be cured of this freakin virus once and for all time!!!

Well maybe instead, I'll drum up a petition with a thousand signatures and simultaneously send the filled copies to the major newspapers in my region, all of the major local TV news organizations, my congressperson, etc...

I'll get all of my friends, both in NYC and anyone in here that wants to help, all of the people who have cared for me over the years, my former students, my community, my church, the state senator and governor, my military buddies and anyone else that I or anyone else can think of that will sign my petition and we'll send it to the director of transplantation here @ UPMC!!!

I'll put so much pressure on these folks that they'll be forced to get me those meds so that I can finally have one less thing to worry about and finally be cured!!! I have got to get busy!!!

Thanks for that story Kramer!

Respectfully,
Henry

Sorry!

It's "since" her ILB28 is a TT instead of "sing"

I emailed my coordinator the site after reading it and asked her to please see to it that my GI doctor, who is part of my transplant team, considers this for me. I'm sitting here tonight with a big tummy again from the fluid that I'm told has to do with the partial blockage in the portal vein. And it's only been a month since I was tapped. It's hard for me to communicate with my doctor unless I make an appointment with him. I'm getting more and more sensitive to foods - no diarrhea in a couple of weeks, but I've taken myself off all milk products, gluten, and iron. I have abdominal pain much of the time, and stay anemic. Billy Vaughn's biopsy in June showed the same as mine - phase 2-3 fibrosis.

I got an email back from my coordinator today saying that my GI doctor said that I'm not a candidate for this treatment. I suppose I would have to make an appointment to go see him to find out why I'm not a candidate.