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I'm scared as hell...sometimes.
Jun 9, 2006

I am 24 year old, african american male who just tested HIV positive 2 weeks ago. I have gone in for more tests and am awaiting my T-cell counts and all of those other tests they sent off for. I am a journalist, from schooling, so I have been researching a lot about the current affairs of HIV care. One of the things that I am finding, or not finding, is the lack of any real empirical studies about people LIVING with HIV. I see the numbers on how many don't know, how many are dying a year, etc. But there does not seem to be any information, studies on those living with this. I read the wonderful first hand accounts on this and other websites, and I am hopeful and scared all at the same time (My emotions have been spinning like a top these last two weeks.) Sometimes I feel like I will live forever and then sometimes I feel like I am going to die in the next hour. My biggest fear is once I do start treatment ( I figure I have been infected since 21, with no signs of infection) how effective will it be. I am showing symptoms of an active immune system, namely peripheral neuropathy, occasionally, so I might be starting treatment within the next year or two. I don't know. But I can't find any hard evidence about drug treatment. How many people who start treatment actually sustain there treatment for long periods of time? Once they do require a resitance to a medication, how long do they last on a new regimen? I understand that HAART is only about 15 years old, so a lot of it is short term knowledge, but out of those who have been taking these meds, how many have been on the same regimen since they started? Are a huge number of people finding that the HIV virus is mutating even when they are adhering to their regimen? This was a long post. And I probably rambled a lot, but fear does that to me. Especially with my young age, I will probably be dealing with these emotions for a long time (if all go well, maybe until my 60s, 70s, 80s?), so my mind just needs to be eased a little. I am pragmatic, but optimistic, so I hope for some good news back. Thank you for your time.

Response from Dr. Young

Thanks for your post.

I'm not sure where you're looking for your data, but as a journalist, you must have access to a few good search engines.

It's not too difficult to find a lot of scientific studies from the US or other countries about the impact of HIV or the changing epidemiology since the advent of combination therapy (or HAART).

The CDC's MMWR journal just released a special issue on the 25th anniversary of HIV- a link to the epidemiology is:

http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5521a2.htm

There's overwhelming data (published) about the impact of drug therapy. Here's the one that started it all, from our HOPS cohort analysis in the US:

http://www.thebody.com/confs/retro2004/steinhart1.html

Many patients have remained on their first combination therapies, though most have moved on to easier and less side-effect prone medications. The vast majority of patients now can expect easy to take, potent medication regimens that can work well for years, if not decades (but the later is a prediction).

I hope this is a useful start for you, BY



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