More NY Newcasts on HepC last night!

[nygirl7]

Finding it impossible to believe the major news network out here WABC did a special segment on HepC last night and how INFERGEN is quite a hope for people who have not cleared the virus with conventional therapy.

They said all the basic facts on Hep and interviewed a woman who was obviously a professional if you can believe it (she wasn't laying in a gutter with hooker clothes on and a needle hanging out of her arm I was SHOCKED!) (snark cause it makes me so mad).

She had failed combo and went over to INFERGEN and cleared.

They said of course it's a stronger Interferon and you do a daily shot blah blah.

Still - I wonder why all the major news outlets are now springing forth in the same week with HepC stories?

They also made a ulogy to some guy (politician?) that just died of it and that is how they brought the story up.

I find it to be incredible news that our cause it getting out there so much lately, in a responsible way.

And I wanted to remind...if regular therapy doesn't work we can do INFERGEN, if necessary.

Debby

[GrandOak]

Thank's for sharing your observations.  I too have noted an increase it reporting upon this insidious disease and testimonies of people who have had to or are struggling with it.

I find it insteresting that this all seems to be coming on the heal of the ability for HIV test sensitivities increasing to the point that they can discern HIV from HCV and are finding that many HIV infected folks are co-infected with HCV.  I have been wondering if this revelation is not responsible for acknowledging HIV's dark cousin and may become a blessing which provides more research and innovations (per chance maybe even a *real* effective cure Hallelujah!! ).

[zzzztime]

Does anybody know why Infergen is only talked about for people who have failed somthing else? I'm on infergen 15mcg, my 20th week or my 127 inj. I've not done any other tx.  I cleared the virus by week 2! thats the only reason Im still on it. ThereI have been days that I struggle with the thought of giving up.

[susan400]

Infergen has been around for about 9 years.  The first time I did it was back in 1998.   I've done it 3 different times.  First time was induction (9 mu) as a daily dosing for 1 month then, followed by 3 x a week (w/Riba).    Second time around (started w/9 mu then, increasing to 15mu) 3 x a week and was with Actimmune, once a week & w/Riba.    Third time was daily Infergen (15 mu) and a double dosing of Riba.   I still haven't cleared, even w/Infergen.  I don't know why, it just is.  I don't skip doses, I do every dose prescribed.  I never used Procrit or Neupogen until this last round.  I have no idea why some of us clear and some of us don't.      I'm not giving up yet.............         Some day, they will come up w/something that will work, or like everybody likes to always say, "I'll die w/something else first...".      

Susan

[nygirl7]

Playing the devils advocate is cool. When they first hyped the upcoming story I was SURE they were going to talk about Vertex.

I was surprised as all get out when it was Infergen.

Still - regardless of what it was - that is THREE major stories in the New York news in the last week.  Three stories saying how incredibly prevalent this disease is and that they expect it to soon overtake HIV as a worldwide pandemic.

As long as they are talking about it in such a huge and well traveled metropolitan area as New York - whatever their discussions are...good.

Get the word out!

And please...show MORE professional type people who have the disease and let people know how they are at risk and burying their hands in the sand will only kill them.


If I relapse my next plan is not Vertex it is Infergen.  Has been all along.  For hard to treat virus strains it seems to me to be the most effective FDA approved treatment available today.  Now...Vertex AND Infergen would be the TICKET, but I'm sure nobody would do a special trial for me ;)

[jmjm530]

It works like that, the Anna Nicole thing in mini -- very mini. First a news item, like reported in the Post, and then a flurry of TV shows on the topic for a couple of days and then, quite unfortuantly, NADA. Often these shows have to be put together in a hurry and it helps when the PR department of a drug company comes forth with both a doctor, patient and story, etc. I just imagine the manufacturer's of Infergen must be sh*tting in their boots regarding VX-950. Cause if Vertex lives up to the hype, I can't see how Infergen can stay in business.

As to Infergen and yourself -- firstly, I have a very strong feeling you're going to SVR, so wouldn't even go there right now. But talking abstract, if the Vertex numbers come out real good when published next month, that would be the ticket in my book. Infergen would require another 48 weeks if I remember and Vertex could be as little as 12-24. That's easy math even if you're on ribavirin, which neither of us are :)

-- Jim

[Tallahassee]

NYgirl,

You are so-o-o funny!!!

Talk to you later!

P.S. GOOD LUCK with your bloodwork!!!!!!!!!!!!!!!!!!!!!!!!! I'm sure you will be another success story!

Sorry, have to run.  Have a great day!

[copyman]

when are you getting the test results? hoping and praying for you. good luck

[wyntre9]

Susan,

i'm really pulling for you girl.  Hold on!

Jim,

Cynics are good.

NYG,

I had to respond to that NYPost article.  I sent the reporter an email, with links to risk factors for the virus, etc.

I scolded her for not having sufficiently researched her story and ended by asking if she'd had a manicure or a tattoo lately?

i couldn't help myself.

you're right, i think, that it's important large media are reporting the story but how much good does it do if the info's all wrong?

IMHO, misinformation is more harmful than no information.

[jmjm530]

Thanks for the heads up, but let me play the cynic this morning if I may. The WABC TV story apparently features Dr. Mitchell Shiffman who is a paid consultant for Valeant Pharmaceuticals, manufacturer of Infergen.
http://abclocal.go.com/wabc/story?section=health&id=5125636

What is interesting is how Infergen is being presented as a "New Medication" to fight HCV, when in fact it's not really new at all. The timing is also interesting as Vertex will be releasing trial data at a European Conference next month. It's also not hard to figure out that should Vertex be successful and come to market, it would be a direct competitor to Infergen.

Be well,

Cynical Jim :)

[stangshelly]

I am so glad to hear that this is becoming a more talked about issue. I mean all the hype on hiv yet not hcv..??? I couldn't figure it out. I have sent letters to reps in the state addressing issues and hope to see some type of awareness of the topic here in pa also. The stats are staggering yet no attention to the issue. and no you don't have to be an iv drug user or a hooker to get the virus. We shouldn't be judged in that manner. Its not the point of how we got it, its how we can beat it!