Friday, January 02, 2009

The history of the HIV epidemic has lessons today for everyone: In the early 1980s we never saw it coming

Randy Shilts, in “And the Band Played On” (which became a cable film), reported sporadic cases of illness that we know now were HIV-related as far back as 1978 (after suggesting that it could have entered the US in 1976). By 1980, a few doctors were noticing it in New York and Califronia, and in 1981, the CDC presented its reports of clusters, first of pneumocystis carinii pneumonia and then Kaposi’s sarcoma.

Back in 1978, in my last year in New York City, I had heard of a couple of isolated medical mysteries, and at the time the media had reported clusters of Hodgkin’s Disease in a few communities in the Northeast. I didn’t hear about KS until February 1982, ironically in the Dallas gay magazine TWT (“This Week in Texas"), on the same day that I saw the film “Making Love.” Still, I didn’t think much of it. I thought that unusual viruses could cause clusters of disease that fizzle and die out. I went to England in November 1982 on vacation (it’s dark but not too cold then) and never thought about it. In December of 1982, though, the Dallas Gay Alliance sponsored the first information program on what they then called GRID, and there had already been four deaths in Dallas.

Publicity about AIDS took off in the Spring of 1983, when Time or Newsweek called it “the public health threat of the century.” Geraldo Rivera ran a sensational report, showing graphic cases of KS, on ABC 20/20 in May 1983. Pretty soon the religious right in Dallas was picking up on the story, claiming that AIDS would soon become casually contagious (if it could, it would change character radically any probably be much less lethal, but it never has in 30 years). A group called “Dallas Doctors Against AIDS” tried to get the Texas legislature to strengthen the sodomy law (Bill Ceverha’s HR2138) and ban gays from working in hospitals, in schools, or where food was served or prepared. The Dallas Gay Alliance fought the bill and it died in committee. A federal judge had already struck down the existing law 2106 in 1982.

The concept that so many people had trouble understanding was the geometric progression in the number of cases within a circumscribed population. Mathematically, that could consume the population in a few years. The geometric increase in cases was strong evidence of a novel infectious agent, a possibility with potential political consequences that no one could afford to face. Gay men became terrified, and I once had a lesion biopsied for KS, in July 1983 when I had just turned 40. It was negative, but I had a very anxious weekend.

In 1984, the cause was identified as HTLV-III, later renamed HIV, while Charles Ortleb’s newspaper “The New York Native” covered the lurid details (I subscribed to it and had it mailed to my home in Dallas). By sometime like 1986, the first anti-retroviral drugs like AZT were becoming available. I helped run the information forums, wrote an information pamphlet, volunteered with the Oak Lawn Counseling Center (the equivalent in Dallas then to the Gay Men’s Health Crisis in New York or Whitman Walker Clinic in Washington) as an “assistant buddy.”

The geometric progression leveled off, and gradually the disease became more manageable politically, and today many people live years on anti-retroviral drugs, which may have big side effects but don’t always. But at the time, it was the first big pandemic.

Today, we brace for other pandemics in the general population in the West: natural ones like avian influenza, or possibly introduced by terrorists, like smallpox. The demographics and communicability are totally different, and the effects on society at large are much more dramatic. Today, the political significance of HIV largely rests with Africa, where it seems to be spread heterosexually, and where it can bring down whole governments, leaving the population not only impoverished but a breeding ground for terrorists.

In fact, one of our biggest public health problems now, in terms of uncontrollable economic impact, is the explosion of Alzheimer’s disease among the elderly.

Times do change, but history has a habit of repeating itself, with twists. People forget history quickly. The biggest horrors of the AIDS epidemic in the gay male community ambushed us about 25 years ago. I lived through it. I remember the details all too vividly.

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