I covered the early years of the AIDS epidemic for a California public radio station. When I first reported on the mysterious disease outbreak in the summer of 1981, there were 41 cases, largely among gay men in Los Angeles, New York and San Francisco. By the time I left the radio station in late 1985, an estimated 100,000 Americans had been exposed to the AIDS virus and more than 13,000 had died.
I would like to share some of the lessons I learned covering the early days of what would become a global pandemic.
Don’t confuse incidence with risk
In 1982 I attended a community meeting in L.A.’s gay community featuring several local physicians. Many in the audience were concerned about the growing number of cases of so-called “gay cancer” and “gay pneumonia.”
One of the doctors urged people to put the disease outbreak in perspective, noting that only a few thousand people had been diagnosed with the ailments. In a country of over 200 million people, the outbreak was “statistically insignificant,” he said.
By only focusing on the relatively small number of cases, the doctor missed the larger issue: many in the audience were at risk for the disease, which had a long incubation period. Had they known that the disease was caused by a virus and that the virus was silently spreading in the community, the people most at risk for HIV could have taken steps to reduce their risk.
Separate facts from theories
In the early years of the epidemic, physicians and pundits floated numerous theories to explain the disease outbreak. One idea was that the breakdown of the immune system was caused by repeated exposure to drugs and inhalants used to increase sexual pleasure. Among gay men, rumors spread that the disease was caused by poor hygiene, an overabundance of male hormones and exhaustion from leading a “fast-lane lifestyle.” Society at large saw AIDS as exclusively a gay disease that posed little risk to most people.
It took years for researchers to test and rule out various theories before discovering the virus responsible for AIDS. Unfortunately, many people continued to engage in risky behaviors during these years, resulting in a tragic spread of the disease to virtually every community in the country.
Like plague victims in the Middle Ages, people at risk for AIDS faced social ostracism and discrimination. Some people suffering from AIDS — as well as those simply suspected of having the disease — were evicted from their homes, fired from their jobs and shunned by family and friends. The AIDS backlash, as it was called in the media, even prompted an increase in physical violence against gay men.
The initial groups at risk for the disease, including gay men and intravenous drug users, were seen as complicit in their own deaths. Jerry Falwell, head of the Moral Majority, said, “AIDS is not just God’s punishment for homosexuals, it is God’s punishment for the society that tolerates homosexuals.” Conservative columnist William F. Buckley Jr. proposed that people with AIDS be forcibly tattooed to identify them.
With the discovery of the Human Immunodeficiency Virus as the cause of AIDS in 1983, public health officials could finally begin to target the disease through medical research to find a vaccine or cure, and by educating the public about risky behaviors.
The stigma attached to AIDS made that nearly impossible.
When Dr. Donald Francis, coordinator of the CDC’s AIDS laboratory, submitted an initial prevention plan with a price tag of $37 million in 1985 it was rejected by the Reagan administration. Francis was told, “Look pretty and do as little as you can.”
Writing in the Journal of Public Health Policy with the hindsight of three decades and 650,000 U.S. deaths, Francis lamented the government’s slow response to the epidemic: “Ignoring AIDS was not a passive endeavor. It was an active policy of the Reagan Administration.”
Focus on people
In May 1983 I produced a half-hour radio documentary featuring two men who had been diagnosed with AIDS. It was the first time people with AIDS had been given the opportunity to tell their stories on a broadcast outlet in Southern California.
Bobbi Campbell, the 16th person diagnosed with AIDS in San Francisco, called for more public awareness of the disease. But he also urged people not to panic and not to blame the people suffering from the disease for their own plight. Campbell became an AIDS activist, later appearing on the cover of Newsweek and on the CBS Evening News. He wore a button with the words “I Will Survive,” promoting hope in the darkest days of the outbreak.
Robert Bland, a Los Angeles writer, said he wanted action, not pity. “Pity upsets me,” he said. “I’d rather see my friends spend their time in gay political activities.”
Putting a face on the disease helped to humanize the crisis, and to highlight the courage and resiliency of people on the front lines of the epidemic. You can talk about risk factors and quote statistics, but people are more likely to change risky behaviors if they hear candid personal stories from people confronting the disease.
People will surprise you
Actions speak louder than words. During the AIDS epidemic, I was often surprised by the actions of people on both sides of the political divide.
Surgeon General C. Everett Koop was fiercely conservative, appointed by President Reagan largely because of his record as an opponent of reproductive choice. But Koop was responsible for quashing attempts by other conservatives to order the mandatory testing of people at risk for AIDS. And he launched the largest public-health campaign in U.S. history in 1987 in an attempt to educate Americans about the risk of AIDS.
California Gov. Jerry Brown was a progressive Democrat who received endorsements and campaign donations from many of the state’s gay and lesbian political action committees. But Brown shelved a series of public service ads with AIDS prevention information in 1982 for fear that the ads, which were targeted to gay men, would be used against him in his campaign for the U.S. Senate.
Koop, whose confirmation as surgeon general was opposed by progressive LGBT groups, put public health ahead of politics. Brown, widely viewed as a friend of the gay community, did not.
It will scare you
In 1982 I read a medical journal article that suggested that AIDS was most likely caused by a virus that could be transmitted during sex. If true, then a sexually transmitted fatal disease with no cure may have been spreading in L.A.’s gay community for years. As an openly gay man, I realized the implications. This will probably kill me, I thought. This will probably kill all my friends.
Reporting on a disease that you’re at risk of contracting is incredibly difficult. It’s tough to maintain any kind of professional detachment and objectivity, to report facts and not fears. If you start the day checking yourself for purple lesions, you are closer to the story than you should be, I told myself. But with the number of AIDS cases doubling every six months and few news outlets covering the story, I felt I had no choice.
It will change you
I stopped reporting on the AIDS epidemic in late 1985. The story was finally getting some national news coverage and the CDC had announced the development of an HIV test. I believed that a vaccine would be developed within a year.
I decided to focus my attention on helping to promote public health. A friend and I started a video production company producing health education videos, including a video for the parents and caregivers of children with HIV/AIDS.
A decade later I took a job at a public-health agency, where I had the opportunity to develop public outreach programs to combat domestic violence, eating disorders and depression. And I published a health magazine in Southern California to promote wellness and highlight some of the medical advances that are revolutionizing disease treatment.
In the decades since the AIDS crisis, my life has taken me from journalism to health education to higher education — a journey I could not have envisioned when I began my career as a reporter at a weekly newspaper in 1975.
Today, I remember the many courageous AIDS activists and medical professionals I interviewed during the epidemic, people who continue to inspire me to do my best in difficult times. Although Bobbi Campbell did not survive the AIDS epidemic, his message of hope did. As the nation confronts another pandemic, I hold fast to that promise: We will survive.