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DESPERATE AND DYING YOUNG please help dr. cohen
Oct 5, 1999

Dear Dr. Cohen, please help me for I am a 16 year old female and recently diagnosed. exposure was in march. vl is 60,000, tcells are 600. I used my savings account for a phenotype test and it came back saying that I am resistant to most meds available. I want to know if there are any new drugs that are going to be effective in resistant virus within the next year or two. Do IL2 t-cells really WORK? Can you please give me a list of drugs that look promising for someone in my situation? Is it true that hiv may be a manageable disease soon? and is gene therapy progressing to the point that it will WORK and be available real soon? I heard from other sites that gene therapy is the future of treatments and that it should be available in about 3 to 4 years? Please help me no one else seems to care saying, "you still have 10 years to live, be happy with that." it's so hard to go on doctor. Please answer my questions for i am running out of places to look for answers or help. no one helps me saying that i am to young to know what i'm talking about. I am going crazy!!!

Response from Dr. Cohen

First. Don't go crazy. Your panic is loud and clear. But progress is being made. And resistance to current meds is being addressed with new meds that are not far from availability.

You need someone who is an HIV expert to look at the phenotype with you. That is the first step. There may be hints of what can be done based on those results. While it can happen, it is pretty unusual to have a phenotype that shows resistance to every drug available. And there are ways to boost the potency of some of the meds we have now so that if the test shows partial success, we might be able to get success in certain combinations. For example, if your test shows partial sensitivity to one of the protease inhibitors (like Crixivan/indinavir or Fortovase/saquinavir) - recent studies have shown that we can greatly increase the blood level of these meds by adding some Norvir/ritonavir to the mix - and greatly increase the potency by doing this. And sometimes, even when adding several meds with partial sensitivity we can get a response.

And yes - there are new meds in development specifically designed to work when the current crop doesn't. For example - ABT 378 - the newest protease inhibitor - has results suggesting it is quite successful even when the first PI no longer works. Another medication - PMPA - was just shown to have about a one log drop even in those with resistant HIV. T-20 - the first med in a new class of "fusion inhibitors" has also shown to be active. And so on.

These newer meds are not easily available - with the possible exception of 378 which just became available on an expanded access protocol allowing some access to it in the US even before it is approved by the US FDA. But it needs "company" to work - and you might be better off creating a combination of the current meds if the test looks as challenging as what you describe.

But again, you need an HIV Expert to guide you. This is complex and scary stuff. And some of us have been working at this long enough that we can give you input that lets you know that YES you can look forward to more than ten years. With current progress, you just might be able to look forward to many more than that.

Good luck. CC



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