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A Long-Term Survivor

The Pioneering MACS Cohort

Summer 2009

Adapted from remarks given on May 12, 2009, at the Carnegie Institution for Science in Washington, D.C., at a celebration for the 25th anniversary of the Multicenter AIDS Cohort Study (MACS), an ongoing prospective study of the natural and treated history of HIV infection in gay men. Over 7,000 men have participated in the MACS since it began enrolling subjects in 1984. The study has produced over 1,000 research publications and has been a seminal influence on how HIV is studied, prevented, diagnosed, and treated.

A few weeks ago a friend of mine, a young third-year medical student at Yale University, asked me to tell him about the "old days" of AIDS. He had just read that book about the old days, Randy Shilts's And the Band Played On, and wanted to know how the story turned out. He wanted to hear about what happened from the mid-1980s, when the book ends, through the intervening years. We had a very long lunch that afternoon.

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Reader Comments:

Comment by: Donald S. (Los Angeles, CA) Tue., Oct. 5, 2010 at 7:26 pm EDT
Thank you for filling in this blank in the general public knowledge of the history of the AIDS holocaust, particularly for enlightening some of the young Gay men who were not of an age to be aware what was happening in the ravaged community which they were to inherit. My great and dear friend, Al Novick, who was a bit of an institution at Yale himself, kept me abreast of the tidbits of optimism sustaining him as another precious friend, Al’s lover Billy Sabella, navigated the AIDS dying process himself. I am 56 years old and have been HIV+ for 32 of those. I vividly recall the illness and aftermath which linked me to scores of Gay men in my doctor’s waiting room who, on a monthly basis, slunk in with their most recent stool kits and emerged with a fresh one, carefully packaged in a discreet paper bag. We were tested for amoeba, Giardia, other intestinal disorders, but the dying hadn’t started yet. Once it began, few of us needed to wait until the invention of The Test in 1985 to know we were doomed. But I am still alive, still breathing, still in existence. For over half of my life I have lived under Damoclese’ sword, and for what? Every single Gay man I knew eventually died. Lovers, friends, acquaintances, gym buddies, shop owners, store clerks, men I nodded “hi” to on the street, every single one of them. I often feel that I’m the last of that tribe, the only one who remembers the “wild” days of Manspace, The One Way, Probe, et al. Anyway, I would l like to be part of a study for long-term non-progressors, however I can’t seem to find one that wants me. The last study I approached being conducted for “Long-term survivors” turned out to be soliciting men who had been infected for 8-15 years! Recently I’ve started playing “bareback,” deciding I not only missed the intimacy of skin-to-skin contact, but that I’d overstayed my welcome. Does anyone know of a study I might qualify for that would give me a feeling of contributing to “the Community?” Thanks.
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Comment by: Michael P. O'Connor (Madison, MS) Wed., Aug. 19, 2009 at 2:54 pm EDT
I participated in a study conducted by the San Francisco Department of Health in 1978 in which blood was drawn for a hepatitis study. That blood sample was frozen and when the HIV antibody test was available the blood from the '78 study was tested an showed that I was positive since at least 1978. I was an original participant in the SFDPH long term nonprogressors study run by Dr. Susan Buchbinder which is no longer active.

I've been living with HIV for at least 31 years now. My T-cells run consistetly at 1,500 or above and my viral load is undetectable.

I was one of the first men in Northern California to take the HIV antibody test in the mid 80's. When the doc told me that I had the virus he suggested that I 'get my affairs in order'.

I am still healthy with the exception of some lipodystrophy and neuropothy. It is really nice to be able to read about other long term survivors while living here in Mississippi.
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Comment by: scott w (san francisco) Fri., Aug. 14, 2009 at 11:21 pm EDT
superb article, greg. i am familiar with the MACS and believe i would have been in the original cohort had i tested positive for hepatitis B (circa 1980 in SF). having lived through the horror of the early days of the epidemic in san francisco, ft lauderdale, and new york, i am fortunate to be alive and well, hiv positive since 1986 and currently being followed in the SCOPE study with Dr Deeks at SF General Hospital as an elite controller. i know the story of AIDS will have an upbeat ending, i just hope it comes soon, preferably in our lifetime.
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Comment by: Positive Women Group (St. Kitts Nevis) Tue., Aug. 11, 2009 at 9:15 am EDT
How will my doctor know if i am a long term progressor. I live in a small country where cd4 and viral load is not even available
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Comment by: GL (las vegas) Thu., Aug. 6, 2009 at 12:00 am EDT
thank you Loreen for contributing to the research..
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Comment by: Loreen Willenberg (Sacramento, CA) Wed., Jul. 29, 2009 at 9:23 pm EDT
Wonderful article, Greg, and a fabulous story! As a woman whose journey as HIV+ began in 1992 ('those terrible years'), I remember all too well the excitement I felt when my Sacramento-based physician included me in the category called 'long-term non-progressor' (LTNP) of HIV in 1995. Now, many years later, I collaborate with researchers whose focus is dedicated to we 'elite or viremic controllers' of HIV - Drs. Pereyra & Walker (Boston), Drs. Connors & Migueles (NIAID), Drs. Deeks, Hunt, Nixon & Levy (San Francisco), and Drs. Asmuth, Flamm, Pollard & Shacklett (Sacramento). We are fortunate to have these brilliant minds working hard to discover the mechanisms of control, in the hope to advance the development of a therapeutic vaccine, heros and heroines, all. My best to you!
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