COLUMN ONE : AIDS: ‘It’s Changed Us Forever’ : Over a decade, the crisis has brought out society’s best and its worst. It also has galvanized gays, energized researchers and made scientists more accountable.


Ten years ago next Wednesday, Dr. James Curran and his colleagues at the federal Centers for Disease Control in Atlanta released a puzzling report: Five men in Los Angeles, all homosexuals, had come down with a rare, inexplicable type of pneumonia. Then 26 gay men--most of them on the other side of the country, in New York--were found to have a form of cancer until then virtually nonexistent in the United States.

As Curran and his fellow epidemiologists were to later discover, they had encountered the first known cases of AIDS.

“I remember people coming into my office in 1981 and saying, ‘if the trends keep going this way, we could have 1,000 cases of this disease,’ ” says Curran, who headed the CDC task force that investigated the initial outbreak. “I said, that’s being pessimistic. I hope it never gets that bad.”

A decade later, the AIDS epidemic is surging toward 200,000 cases in the United States, with another 500,000 cases expected to develop by the end of the century and millions more around the world. And in its cataclysmic impact on patients and the larger society alike, the AIDS epidemic recalls the judgment of the hero of Albert Camus’ “The Plague”: “What we learn in times of pestilence (is) that there are more things to admire in men than to despise.”

Beyond the sheer numbers, AIDS has served as a “lens” through which to view contemporary American society, says Energy Secretary James D. Watkins, who chaired President Ronald Reagan’s AIDS commission. It is a society that has been “quick to reject, deny, condemn and discriminate,” he says, but also one that can demonstrate “the spark of human spirit that rises high when faced with the gravest of human tragedy.”


“AIDS has changed us forever,” says Dr. Michael Gottlieb, the Los Angeles immunologist who identified those first cases. “It has brought out the best in us, and the worst.”

History has known other devastating epidemics: the impact of the Black Death on medieval Europe, which killed one European in every three and wiped out entire villages and towns, changed the face of that society forever.

The impulse to shun sufferers has always been a recurrent and pervasive element in epidemics. But the political and social ramifications of AIDS have been unique--involving groups that have traditionally been singled out for ostracism: homosexuals, drug abusers, racial minorities and the poor.

The result has been 10 years of images--both noble and ugly--that will never be forgotten by those who lived through them:

Frightened hospital orderlies leaving food trays in the halls outside the rooms of AIDS patients; teen-ager Ryan White, at first isolated and rejected, who nevertheless fought to educate the nation about AIDS until the day he died; the Ray family, with three HIV-infected sons, who were forced to flee their Florida home after it was firebombed; a funeral home called Redden’s in New York’s Greenwich Village, where bodies of those who had died of AIDS were never turned away, not even in the beginning when the cause of AIDS was unknown. And there were the countless men and women who have served as “buddies” to the afflicted, cooking meals, doing laundry, being there; Surgeon General C. Everett Koop, defying the policies of his own Administration to speak out about the need for early and widespread AIDS education and compassion for the sick and dying, and the AIDS memorial quilt, each panel representing a person killed by AIDS--a catharsis for the bereaved and a powerful reminder of the scope of the nation’s loss.

Acquired immune deficiency syndrome, or AIDS, is caused by the human immunodeficiency virus, known as HIV, which attacks key cells of the body’s immune system, making the individual vulnerable to a range of rare cancers and opportunistic infections. The virus is transmitted through anal and vaginal sexual intercourse, through the sharing of contaminated hypodermic needles and from HIV-infected pregnant women to their fetuses. In rarer cases, it has been transmitted through blood transfusions and blood products, organ donations and breast milk.

Can Remain Dormant

The virus has been known to remain dormant in the body for 10 years or longer before the immune system begins to wear away and symptoms appear.

The majority of cases in this country have been in the gay male population, where AIDS was first recognized. In recent years, the disease has afflicted a growing number of heterosexuals, largely as a result of intravenous drug use, and also has appeared in disproportionate numbers among minorities.

As terrible a toll as AIDS has taken in the United States during the last 10 years, it is also wreaking decimation overseas, particularly in Africa--where it began in the heterosexual population and has spread rapidly through sexual contact--and in other developing countries whose medical systems are poorly equipped to cope with the disease. In addition to the deaths, it is crippling the already troubled economies of these nations because it is largely killing the 20-to-45 age group, the most productive members of these societies.

In the United States, the first to feel the impact--both physical and social--were gays. New York writer Larry Kramer remembers reading an account of the new disease on July 3, 1981--under the headline: “Rare Cancer Seen in 41 Homosexuals.” The story described an outbreak of Kaposi’s sarcoma, a capillary cancer, which often appears as purplish lesions or bruises on the skin. Until then, Kaposi’s had rarely been seen in anyone younger than 50 in this country.

Eight of the young men had died less than 24 months after being diagnosed--a time frame that was to become painfully familiar later, as the epidemic began to rage. “I read it and it scared me,” Kramer recalls. “I just felt this moment of foreboding and awe.” Worried, Kramer immediately called Dr. Alvin E. Friedman-Kien of New York University Medical Center, who had been treating most of the cases in New York, and was quoted in the story.

A few weeks later, Friedman-Kien spoke to 80 gay men who had crowded into Kramer’s Greenwich Village apartment on a stifling August night. “What he said then, you could give the same speech today,” Kramer says. “He said: ‘I think it’s spread by having sex. I think it’s a virus. And no one’s going to pay any attention to it because it’s happening to gay people. But it won’t be happening to gay people forever. You’ve got to spread the word.’ ”

But gays--like other segments of the population who were to become affected later--at first resisted the notion of what was happening to them. It was called denial.

Kramer and several friends went to Fire Island that 1981 Labor Day weekend to distribute articles about the mysterious new “gay cancer” in gay neighborhoods and to collect money to support a fledgling new organization, Gay Men’s Health Crisis, which, along with AIDS Project Los Angeles and the San Francisco AIDS Foundation, would move to the forefront of AIDS education and social service efforts.

“We had more than 10,000 copies made and got a copy to every single house on Cherry Grove and the Pines, but we were not well received,” Kramer says. “A lot of people threw the articles back in our faces. We set up a booth in the harbor to try to solicit money and people made disparaging remarks to us. We stood outside the main disco all night--they wouldn’t let us solicit inside--and we collected $24 all night long.”

By 1988--when he stopped counting--Kramer had lost 500 friends to AIDS.

Once it became apparent that AIDS was cutting its deadly swath through the gay community, the epidemic became a vehicle for people to vent their anti-gay feelings. In some quarters, gays were blamed for bringing AIDS upon themselves. Conservative columnist Patrick Buchanan, for example, wrote in 1983: “The poor homosexuals; they have declared war on nature and now nature is exacting an awful retribution.” So-called “gay-bashing"--incidents of violence against homosexuals--increased and they had a decidedly AIDS theme.

In a 1989 survey, the National Gay and Lesbian Task Force reported that 1,078--or 15%--of the total number of 7,031 reported incidents of violence against gays were AIDS-related--that is, they involved some kind of verbal or other reference to AIDS or were directed against people with AIDS or an AIDS clinic. The proportion of such incidents has remained virtually the same since 1986, the task force said.

Dr. June Osborn, a respected figure in public health who chairs the National AIDS Commission, believes it is important that society has begun to acknowledge and express these feelings--but only so they can be confronted and rejected. “Right now, mid-course in the epidemic, we have a society that has indulged itself in the right to hate sick people and the right to panic in the face of that,” she says. “It’s too bad to learn it was there, but now we know. This has been a reality for gay people in our society, and now it’s time to deal with it. My optimism says that the increased openness which is acknowledged and reacted to means that society is beginning to reject it.”

It is clear that the growing visibility of gays as a result of the AIDS epidemic has forced many segments of the population to confront--and increasingly accept--the gay presence in society. “AIDS certainly has given a human face to an invisible minority and has resulted in a certain amount of compassion--that didn’t exist before--from some elements of society,” says Robert Bray, a spokesman for the National Gay and Lesbian Task Force.

Indeed, in many communities, health care institutions, large corporations, churches (which in many instances at first cited biblical proscriptions against homosexuality) and other organizations have responded to the epidemic with programs and policies that show they are sensitive to the special needs of AIDS sufferers. Numerous businesses, for example, established their own in-house AIDS education programs and internal policies that prohibit discrimination against employees with AIDS.

“The churches, which in the beginning were adamant against those with the disease because they associated it with homosexuality, have done a major about-face,” says Koop, the former surgeon general. “Now, as I travel around the country, some of the best social works aimed at the relief of the problems of AIDS have been organized by churches.”

The epidemic has also inspired the creation of thousands of community-based groups across the nation, which are tending to the care and needs of the HIV-afflicted.

Osborn and others believe this compassion will continue to grow in the next decade as “the sheer magnitude of the epidemic becomes apparent,” she says. “People in smaller communities--where people with HIV are still hiding--are continuing to live under the pretense that there is no epidemic.”

During the 1990s and beyond, Osborn predicts, everyone will know someone infected with HIV or ill with AIDS. “And wherever that has happened, it has served as a partial cure to what we’re talking about,” she says.

In many ways, the AIDS epidemic has served as a galvanizing force for gays. It has made the gay rights movement more visible and powerful than it has ever been before. Most of this came as a result of widespread anger toward policy-makers--particularly in the Reagan and Bush administrations--for what was seen as an indifference to the epidemic.

It is an anger that still exists. Critics point to ongoing battles over funding for care, research and education, and a failure to respond to the threat that looms over the health care system in the next decade. Funding for AIDS research, education and care has risen from $5.6 million appropriated by Congress in 1982--after the White House failed to ask for any AIDS money--to nearly $1.9 billion in fiscal 1991. Congress consistently has appropriated more money for AIDS than the amounts requested by either the Bush or Reagan White House.

“AIDS sadly has revealed more than it has changed,” says Thomas B. Stoddard, executive director of Lambda Legal Defense and Education Fund, the largest gay legal organization in the country. “Especially the slowness of the government to cope with any catastrophe that befalls people who are outcasts.”

Key Decisions

As a result, gays are now “making life-changing decisions,” says writer Kramer, who lives with the knowledge that he is infected with the HIV virus.

“People who started out in the closet, leading their professional lives, are coming out of the closet, leaving their jobs and coming to work at something in the gay world,” Kramer says. “People are saying: ‘If I’ve only got so long to live, I’m going to do it with pride.’ That’s why the gay community has become so much stronger because of AIDS.”

Indeed, it was gays who taught their own how to practice “safe sex,” long before federal health officials could agree on what kind of education campaign to fund. And it was gays who took to the streets in their outrage to demand that their government do more to stop the epidemic.

They won a surprising number of important battles as a result.

The AIDS epidemic gave the greatest impetus to a growing movement that forced federal regulators to recognize that they must find new ways to speed experimental drugs to those suffering from life-threatening conditions. Sweeping legislation prohibiting discrimination against those with disabilities, including AIDS, was enacted by Congress and signed by President Bush. AIDS created a new element of patient advocacy that has now begun to carry over to those with other diseases.

The epidemic has energized the scientific research community to accelerate its efforts, although it has also made the public realize, “that we don’t have a scientific answer to everything,” Koop says.

Nevertheless, scientists almost universally agree that the advances made against AIDS in the last decade came with unprecedented speed, in part because of new technology and newly acquired knowledge about retroviruses--the special kind of virus AIDS is--and because researchers were excited and inspired by the challenge. The cause of AIDS was discovered in a very short time, and numerous therapies to treat AIDS-related conditions have also been developed and made accessible to the afflicted.

“It has brought out the best in science,” says Dr. Anthony Fauci, the director of AIDS research activities for the federal government’s National Institutes of Health. “Not only because scientists are driven by the need to solve puzzles and answer questions, but because of that extra push you get knowing that what you’re doing will have an impact on the lives of a lot of people.”

Beyond that, it has also made scientists accountable to new constituencies.

“The magnitude of AIDS and the pressures of the activists have brought new attitudes towards traditional things that had been sacrosanct--like scientists feeling they don’t have to explain what they’re doing to the public because it’s their business,” Fauci says.

He and others believe that the next decade will bring more advances in therapy, and likely an experimental vaccine that will be launched into large-scale international testing.

But the next decade will also invariably bring more pressures on the health care system, more suffering, more death, more sorrow. For those whose lives and careers have become inextricably bound with AIDS--and who realize what lies ahead--there is a profound sense of disbelief that only 10 years have passed since the epidemic made its ferocious debut.

“Ten years? That’s incredible,” says the CDC’s Curran, who now directs the agency’s AIDS division. “You’d think it must have been longer for something like this--a single disease--to have so taken over the world.”