What's the latest news on FDA approval for VX-950?

[ChrisDDD]

I'm a genotype 1b non-responder to interferon '99, Peg-interferon&Riba 2000, Infergen&Riba 2005 developed retinal hemorrhaging-automatic disqualifier for clinical trials.  Never achieved more than 1-log drop, infected 1976.  I'll be 56 in October, high BP, arthritis, mild stroke 6/2009.  Docs want to treat next year with Peg&Riba&VX-950 or other?  PI's still 10 years out?  Current success rate with VX-950 40%?  Why bother?  Arthritis getting so bad I probably won't be able to give myself my shots.  Any good news out there?  Gregg Allman weighing heavy on my mind.  Feeling pretty hopeless.

[frijole]

i think it is possible to be on transplant lists in several states.  Therefore you can pick one that has a short list and as long as you can get there, you are in.  Case in point was Steve Jobs. Apple's founder.  In 2009 he got his liver transplant asap.


June 29 (Bloomberg) -- Steve Jobs, Apple Inc.’s chief executive officer, got a liver transplant quickly because of a U.S. system that favors patients with the means to rush to geographic areas where there is less competition for organs.

Memphis, where Jobs got the transplant, is one of several U.S. meccas for liver patients who can afford to travel, doctors said. Flight records show Jobs’s personal jet flew at least six times this year from California, with one of the longest transplant lists in the U.S., to Memphis, where the wait is shorter.

Sounds like you have tough luck if you live in California.

frijole

[ChrisDDD]

Thank you!  I do feel better knowing I have company, Bill, though that means other people are in the same boat as me, which is not good.  Thank you also for the info on VX-950, as I have plans to make about my life and I often think we patients know more than the doctors sometimes?

I must say to all of you that my suspicions that celebrity status=liver transplant began a few years ago with David Crosby.  I always loved Crosby, Stills, Nash & Young, but I was furious when he said his celebrity status had nothing to do with his having gotten a transplant (snap of the fingers) just like that.  Bull****!!  Same with Gregg Allman.  I don't know if Steven Tyler of Arrowsmith got a transplant, but he did admit to having the disease, along with Naomi Judd years ago.  Does anybody else feel angry that they don't do more to raise public awareness of this awful disease and pour more money into research to help us?  Agh!

[tashka]

Very interesting information. I didn't think about it. I am sure it is considered ethical.

[Bill1954]

Where I live in California, it’s common for people that need a transplant to list in two or more centers. The facility usually requires that the person remain within a 6-8 hour radius from the center at all times, in the event an organ avails itself.

Now if a person can access a private jet, I imagine they could list virtually anywhere and still be in compliance with the required time frame. I believe that might have been the case with Apple Computer’s Steve Jobs; he was transplanted recently. While his residence was in California, I think he listed and was transplanted in Tennessee?

I’m pretty sure this is considered ethical by UNOS; regardless of how others might view it. I wonder if someone that is more knowledgeable on this subject can weigh in on it?My feeling is that it's not so much celebrity status that drives this, but the availability of wicked-quick transport.

--Bill

[tashka]

Yes, I also get the impression that celebrities don't have to wait too long for a transplant. They just get it as soon as they need it. I don't know how and why it happens. My belief is that everybody should be in the same line. Are they moved to the front of this line ahead of other non-famous people?

So many people die while waiting for the liver-and never get the organ. I never heard of something like this happening to a celebrity. Another situation-again when the waiting time is too long-is when the patient becomes so sick that he just can not handle transplant and dies soon after. Not only human life, but the precious organ is wasted.

[copyman]

speaking of greg allman, does anyone find it odd that celeberties are able to get transplants much faster then the average person. I guess you can get anything if you have money.
some say money can't buy health but it sure helps if you have it, especially if you need a transplant.

It is a known fact you get better health care with good insurance and money!

[Bill1954]

Hi Chris,

Sorry to hear you’ve been struggling lately. The latest poop on VX-950 (now Telaprevir) is a late’11 release, according to my hepatologist at last week’s appointment. There’s a thread with some updates on Allman in the HCV social community here:

http://www.medhelp.org/posts/Hepatitis-Social/Gregg-Allman-transplant/show/1272870

Hang in there; for what it’s worth, you have lots of company around you waiting for better therapy. Take care—

--Bill