Bay Area Reporter -June 1, 2001
analysis by Bob Roehr

Then four weeks later MMWR printed news of 26 young gay men in New York and California diagnosed with Kaposi's sarcoma (KS), a rare form of cancer heretofore seen primarily in elderly men of Jewish and Mediterranean extraction. The trickle of events became a flood of what would be called HIV/AIDS.

It was not the start of the HIV epidemic - that surely began years and likely decades earlier - but it did mark the beginning of our recognition of that pestilence.

The statistics over the last 20 years numb one beyond comprehension, be it nearly a million Americans estimated to be infected with HIV, the 40,000 who still become infected each year, or the 440,000 who have died of the disease.

Who can understand the meaning of 36 million people throughout the world carrying the virus? Or that the rate of infection continues to explode throughout much of the world. It is only when people realize that a 15-year-old in South Africa has a 50-50 chance of dying of AIDS before the age of 30 that the horror begins to take on a human scale.

The American perception of AIDS has gone through a cycle of meanings over the last two decades. First came fear of the unknown, a terror that stalked the gay community and fueled their pariah status among the broader public.

Many gay men reacted with denial, and then as more became known of the mysterious killer, by adopting safer sex practices that reduced the risk of exposure. They cared for ill friends and lovers, first through informal networks of support, soon with an unprecedented blossoming of organizations that sprang from the community. Those organizations not only changed the gay community, they also changed the way that biomedical research is conducted, how drugs are approved, and the way that medicine is practiced.

Rising from death beds

Protease inhibitors, introduced in the mid-1990s, slowed the terror, though they did not - and still do not - work for all. People rose from their skeletal death beds, gaunt flesh plumped to fullness in what came to be called the Lazarus effect. The so-called miracle drugs first brought expectations that AIDS might be vanquished, and then a more reasonable hope that perhaps HIV could become a chronic, manageable disease.

Protease inhibitors brought a respite, a lull of normalization, if one considers it "normal" to take a dozen or more pills a day on a rigorous time clock paced around one's meals.

Then there are the side effects; the immediate ones such as diarrhea and rash, and the longer-term ones that scientists still know so little about. Like fat that seems to migrate, creating sunken pockets and lumpy masses, a disfiguring new stigmata marking those whose bodies are fighting the virus. And imbalanced blood chemistry that greatly heightens the risk of diabetes, high cholesterol, heart attack, and a liver under continuous pharmaceutical assault.

But the number of those dying from AIDS continued to fall every year since protease inhibitors were introduced. So this must be better, things were getting back to "normal," according to many. The American public seems to believe that, as reflected in polling data released on May 25 by the Kaiser Family Foundation. The proportion of Americans who call AIDS the nation's top health problem has declined from 44 percent in 1995 to 26 percent today, second to cancer.

Transforming

Still, 66 percent believe that the federal government is not doing enough to fight the epidemic. Only 5 percent say that spending is too high, while 25 percent say it is "about right" and 55 percent call for more money. Support is near universal for sex education in high school that includes HIV prevention (97 percent) and information about condoms (90 percent).

But it appears that the respite the developing world has purchased with expensive drugs is starting to fade. Several factors suggest that AIDS is transitioning into a new phase.

The number of AIDS deaths has stopped declining; in fact it has begun to rise again. New York City reported a 2 percent increase in 1999. Last year Washington state reported a 6 percent increase in the number of AIDS cases, another sign that drugs are failing.

Public health officials are concerned by a decline in safer sex practices as measured by survey data. That is particularly true among the young. Those under the age of 25 constitute half of all new infections, and are of a generation who have always known AIDS.

That very familiarity has reduced its sting, while the success of new therapies has created the illusion that the disease is easily managed. The specter of gaunt shuffling victims who so unsettled people a decade ago that many in the community became more prudent in their sexual escapades has been replaced with false images of mountain climbing and triathletes competing because of their combination therapies in drug company ads for HIV medications.

STDs on the rise

Sexually transmitted diseases are on the upswing. There have been small outbreaks of syphilis in Seattle, Los Angeles, and San Francisco, while in New York the caseload for the first quarter of this year was double that of the previous two years, primarily among gay men in Manhattan.

STDs are a marker of unsafe sexual activity that increases exposure to HIV. They also facilitate the transmission of and vulnerability to HIV. Still, it is unclear if the higher levels of STDs represent a broad trend or a relatively small circle of "barebackers" who are passing the infections back and forth among themselves.

The domestic challenge, according to officials, is to formulate new prevention interventions that greatly reduce the estimated 40,000 HIV infections that occur every year; develop new therapies that are more effective, less toxic, easier to use, and more affordable; and to provide access to medical care and support for those who need it.

The international challenge is even greater. In the United States, 1 in 300 people are infected with HIV. In much of sub-Saharan Africa the ratio is 1 in 5, and in some villages as high as 1 in 2 women of childbearing age. Even if drugs were provided for free, there simply is insufficient medical infrastructure to ethically use those drugs on a broad scale. Furthermore, laboratory tests suggest that the crucial protease inhibitors do not work as well against the strains of HIV prevalent outside the U.S. and Europe.

Developing a preventative vaccine will be the cornerstone of reining in the pandemic, officials believe, but that seems to be at least a decade away and is perhaps impossible. Education for prevention, condoms, and development of microbicides that can be used in lubricants to kill HIV are all components that are more immediately available and must be used, activists say.

It seems that AIDS will remain a central concern for society for our lifetime.
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