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- MICHAEL PETRELIS
Friday, June 01, 2007
AIDS IS NOT over, but HIV research activism has diminished to such a low point that one could be forgiven for thinking the epidemic is no longer a crisis.
The Office of AIDS Research Advisory Council of the National Institutes of Health met in April and there were barely more than a dozen members of the general public in attendance, myself included, and I was the lone person to address the council during its daylong proceedings.
Officially, OARAC’s advance agenda allotted just five minutes at the end of the day for public comment, but the co-chairs, Dr. James Curran of Emory University and Dr. Jack Whitescarver of the NIH, after each scientific presentation asked for public comments or questions.
Given that I’ve been suffering “protease paunch” lipodystrophy from my AIDS cocktail, I was keen to hear about research to control such side effects or maybe even reverse the fat changes in my body.
Some of the OARAC members, especially Dr. Curran when he was at the Centers for Disease Control, and Dr. Ron Valdiserri, who now works for the Veterans Administration but once ran several HIV prevention programs at CDC, have been on the receiving end of my activist ire over the years.
In his presentation on cardiovascular disease, Dr. Steven Grinspoon of Harvard Medical School, reported that bypass surgeries are significantly increasing for people with AIDS, due to the extra burdens on the heart from drug cocktails. He expects this trend to continue as more patients survive longer on the medications and said that heart transplants loom on the horizon for older people with AIDS.
SPEAKING AS SOMEONE grappling with cardio issues, some brought on by the paunch, I asked him about ways to avert needing bypass operations or transplants in the long run. Lifestyle modifications in all PWAs, not just those above 40 or on the cocktails for more than a few years, were advised, along with prescribing Metformin to combat glucose-related problems. Essentially, Grinspoon recommended more exercise, a high fiber diet and especially stressed lowering the fat intake, to give the liver a break.
Since there are quite a high number of gay men with the big bellies or facial wasting or the buffalo hump and other fat distribution changes, I said, it’s a form of disclosure about having an HIV-positive serostatus, and that can facilitate finding sexual partners of the same status, making for less isolation among PWAs and also meaning no further transmission of HIV to a negative person. But I didn’t want to imply that stigma is very real for us and has tremendous psychological influence over PWAs.
Dr. Validerri said his division of AIDS at the Veterans Administration was addressing the mental health problems brought on by stigma and reshaped bodies. I was moved as he bemoaned others who believe plastic surgery, particularly restoring fat to cheeks and removing it from backs and neck, was nothing more than frivolous cosmetic surgery.
AT THE END of the meeting, when it finally was the official time for public comment, I addressed three topics.
First, the NIH antiretroviral panel must develop some real transparency. Patients and doctors need to know about the deliberations behind the drug recommendations, and there is no reason to hide the agendas and minutes and transcripts produced by the panel.
Second, NIH and its local and private partners must work together to stop with the “crying wolf” approach to HIV prevention, as part of a behavioral agenda. I said every time a San Francisco health department expert screams about alleged sub-Saharan levels of new infections or HIV prevention workers overdo the alarms about cases like the supposed super HIV gay man in New York in 2005, who is thankfully still alive, many gay ears go deaf.
Third, the practice of serosorting, which I stressed was community-created and community-promoted without help from CDC, NIH or AIDS groups, has really brought the HIV crisis in San Francisco under control. Sure, there would be an uproar from the Bush administration, not to mention many Democrats in Congress, if there was active and sustained promotion of serosorting, but it would be worth it because of the further reduction of new HIV transmissions.
In response, Dr. Curran praised the gay community for working diligently over the course of the epidemic, especially in the early years, to stop the spread of the disease. He also said he never regretted advising positives to have sex with positives and avoid transmitting the virus and he wants to see more research on serosorting from San Francisco and elsewhere.
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