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Re: Clarification for thanbey at www.hcop.org

Re: Clarification for thanbey at www.hcop.org

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Posted by thanbey on September 06, 2000 at 04:36:26:

In Reply to: Clarification for thanbey at www.hcop.org posted by Goerge Tyndall on September 06, 2000 at 00:37:55:

: In reference to your message concerning the topic of hepatitis C. I stand by the statement people are dying daily waiting for the new peginterferon..There are only so many cells in a persons liver and they die daily without drugs to slow it down..The longer the FDA delays the approval of pegasys the many thousands of U.S. citizens will have their livers continue to go bad and they only have so many cells as stated above before its transplant time..Not all will get transplants so the bottom line is people will continue to die without this medicine...

Dear Mr. Tyball,

We are probably not going to agree on this, in spite of the fact that I would like to see the new treatments (especially Pegasys by Roche) available as soon as possible. We (HCOP) supported a fast track for the treatment in the application to the FDA. We wrote sa letter to the FDA urging approval in a timely manner. But the drug is not a different treatment.
It is the same treatment now availalbe, but would be administered less frequently because it would be longer acting in the body. Dosing daily would do the same. Also Consensus interferon has shown similar results to the pegs when combined with ribaviron. This is also currently available.

The contention that people are dying is true, but these drugs will not help those people. The current treatments actually may arrest, reverse and help the liver histologically(stop the cells from dying) even when the virus is not suppressed. And this occurs without the ribaviron which suppresses the virus but does not diminish damage to the liver.
So, the end point of treatment is a histological response(stop cell death), rather than a viralogical (kill all the virus) one anyway. At least that is what most of us who read the literature now believe. We still do not know what the mechanism of cell death is!

And experts are beginning to see that the over influence of the manufacturers has caused people to believe, as you do, that the situation is more critical than it is. The new treatments you have referred to will not help those who are at the transplant stage. Those people cannot be treated with the interferons with any great success and the pegs will not change that.

I just spent a week at a transplant center. The chances of response at end stage is only 5-7% for interferon treatment. That will not change significantly with the Peg.

Those for whom the treatment is currently prescribed suffer ill effects during, and sometimes after treatment. That will not likely change, either. Careful evaluation is necessary before prescribing the current medications. Too often people are still being treated on the basis of the antibody test alone!

People with early cirrhosis may benefit from Pegasys (Roche) as the data shows some improvement for those people. That is surely good news. For those who would be marginal in any sense at all, there are compassionate programs where the medication is available now, but those people are few in number.

The disease moves very slowly. The rates of progression are slowed by abstention from alcohol more than any other single factor.
The scientific data simply does not support your contention that the Peg will save large numbers who would die without it.

According to Dr. Robert Levine (a Hepatologist), rationally sound advice is warranted:

" I will continue to advise a tincture in time for most of my patients with
histologically mild chronic hepatitis C, both because I do not believe that
their prognosis is as daunting as is often stated and because the outlook
for new and more effective therapies is promising. "


Cost-benefit analyses,
and data funded by Schering which say that current treatments are
beneficial for HCV patients with "mild" histologic disease, appear to be
more marketing ploys than hard science (Wong 1998; Fang 1999).

One more thing: the single most important thing our policymakers can do is to institute universal testing and screening in this country.
If they did that, we can teach people to abstain from alcohol early enough in the disease to SIGNIFICANTLY affect the progression of the disease.
I would venture to say that that would help us to identify those for whom early treatment would be effective and to prevent the need for any treatment in the majority of people (80% will never progress, and only 7% ever progress to cirrhosis)
So those following this discussion are urged to write these Congressmen and tell them that!

We would then be able to reduce the DEMAND for transplants because people would be able to prevent liver damage caused by the ignorance of the disease they have.

I hope your wife is doing well. If you wish to contact me off this board, please feel free to do so at thanbey@hcop.org.
There is a need for activism in HCV, but prevention and testing has been overlooked a long time as the marketing of an inferior drug has taken precedence.
It is time the patient and advocate community started to write the agenda.

The bottom line is that more people die WITH hepatitis C than OF it.

Thanks for the discussion.

thanbey

www.hcop.org



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