September 2001

AIDS: Remembering 20 Years

Bruce Garner, NEAC Board Member

Bruce GarnerThe date was June 5. It was a Friday - and it was 1981. That day the CDC’s Morbidity and Mortality Weekly Report (MMWR) listed the first cases of what would later become known as acquired immune deficiency syndrome or AIDS.

From the start, the scientific/medical community would perpetrate a travesty: They called the disease GRID -Gay Related Immune Deficiency. In doing so they would make AIDS forever a political condition.

It should have been unconscionable to even think about connecting a medical condition to a specific group. Tay Sacks has no reference to people of Jewish or Mediterranean descent. Sickle cell anemia is not, by its name, connected to people of African descent.

By 1982 people had begun dying in noticeable numbers. They all had diseases like pneumocystis pneumonia and Kaposi’s sarcoma that did not ordinarily kill people. Time would reveal other exotic, nearly unpronounceable viral and bacteriological infections that caused dementia, wasting syndrome, diarrhea, and ultimately a death as horrible as any imaginable.

In the early years, those thought to be at risk were referred to as the four H’s: hookers, homosexuals, Haitians, and hemophiliacs. Again, labels associated with people were used to identify a disease. It would be several years before we learned that the method of transmission of the virus had nothing to do with who you were.

My involvement began when a friend was having problems with his Social Security disability claim. Months went by. In July 1984 I learned that Tom was in Emory Hospital again, still with no decision. The doctor had waltzed all around a diagnosis of AIDS but had never written the definitive words in the medical evidence.

I got the proper medical information from Emory Clinic and took it to the Disability Determination Services office. The examiner said he would let me know. I got pushy; I said I would wait. The examiner went away for a short while, then returned with an approval.

I rushed to Emory Hospital to tell Tom. He could not speak. The tracheotomy tube was still in his throat, though life support had been removed. But Tom smiled when I gave him the news. His children would be receiving survivor benefits as well as his retroactive payments.

Watching Tom take his last breath just before midnight on July 4, 1984, is permanently etched in my memory. That was the year that the modes of transmission of the virus were identified.

In September, another friend, Gene, was diagnosed with AIDS. That same weekend I began my career as an AIDS volunteer with AID Atlanta; in October I joined the board of directors. I have been on at least one and as many as three national and local AIDS service organization boards ever since.

For many years I lost an average of two dozen friends a year. I once kept a list. When it topped 200 names, I stopped. I lost one entire generation of friends, then made and lost another.

Even after the virus was isolated and named HIV, infection and death continued. In 1986 Surgeon General C. Everett Koop called for AIDS education in children of all ages. And he called for the widespread use of condoms.

Once the virus was isolated, there was new hope that drugs could be found to fight the disease. The first, AZT, was a gamble. It was not clear what the dosage should be, how frequent, what the side effects were, what the long-term effects might be. It began with four pills every four hours around the clock. You’d be in a group, a pill timer would go off, and there was a mad scramble to find whose it was.

During those years we witnessed people with AIDS being bodily removed from airplanes and left to crawl across a sidewalk to a taxi - if one agreed to take them. We witnessed housing evictions, not because of inability to pay rent but because of having AIDS. Some dentists, even some doctors, refused to treat AIDS patients. Ignorance and fear were the orders of the day. For many they still are.

In 1989 I reached a milestone age: 40, and time for complete physical exams. Instead of an HIV antibody test, I chose a T-cell count. If the count was below a certain number, I was likely to be infected. I was. There was no screaming or crying, no hand wringing. By that time I was well versed in the subject of HIV.

Later in 1989, the drug protocols indicated that anyone with a T-cell count lower than 500 should be on AZT. Mine was and I did. I washed down my very first doses with a Michelob beer—and started beeping every four hours!

New drugs came out. Some worked better than others, some not at all. Some people could not tolerate the side effects. More people died. I made new friends. I buried friends.

In 1990 Ryan White died from AIDS at age 18. His name lives on in the Ryan White CARE Act - now the major source of federal funding for services for people living with HIV/AIDS.

By 1995 HIV was the leading cause of death for Americans between the ages of 25 and 44.

In 1996 protease inhibitors and multi-drug therapies were introduced, bringing new optimism. For many HIV is becoming a chronic manageable medical condition. The pills keep us healthy. But I still lose a couple of friends each year to AIDS. And the situation in the less developed areas of the world is deeply serious. The drugs either are not available or are too expensive. In those parts of the world, AIDS still means death. It also means millions and millions of orphaned children.

Several years ago on a visit to Honduras for the National Commission on AIDS of the Episcopal Church, I sat across the table from four young adults, all HIV infected. There I was, with access to all the drugs available. There they were, with access to virtually none. Talk about guilt!

Educational efforts in the gay community in this country slowed the rate of new infections to a standstill several years ago, but by 1999 infections were once again on the rise. A new generation of young gay men had not been educated by the deaths of dozens of friends. Youth equates with invincibility; add to that the false sense of security drug regimens appear to bring and you have a recipe for disaster.

Sadly, children rarely receive adequate education about HIV prevention in school, at home, or at church or synagogue. Just saying no has never worked. Kids need to know in terms they understand, explicit and direct, what causes HIV infection and how to prevent it. Talking to them about sex, teaching the use of condoms, will not increase their sexual activity. From the high rates of teen pregnancies and STDs it’s clear kids are having sex whether we talk to them about it or not! The only educational tool school administrators seem to find safe is the AIDS Memorial Quilt - but that alone is not enough.

There are powerful, dangerous myths about AIDS and HIV. Besides the widely disproved myth that talking about sex increases sexual activity, here is another: No African American men have sex with men. None are gay. If anything, they are all bisexuals. Hogwash! The same lie is told in the Latino community, and the Asian. Those myths kill!

AIDS is now the leading cause of death in African-Americans between the ages of 25 and 44. In a recent study done in six large cities, nearly one third of the young black gay and bisexual men are testing positive for HIV - one out of three!

If you take nothing else away, at least take the truth:

Take the truth that more than 20 million people have died from AIDS worldwide and over 8,000 more die each day.

Take the truth that HIV infects 40 million people and that number increases by over 14,000 every day.

Take the truth that unprotected sexual activity spreads HIV.

Take the truth that the virus doesn’t care what sexual orientation, social or economic status, race, creed, or religion its host might be.

Take the truth that there are men who have sex with men in all racial and ethnic groups.

Take the truth that your children and grandchildren, your nieces, nephews, brothers, and sisters need to know that having unprotected sex can infect them with HIV regardless of the gender of their sexual partners. Talk to them.

Take the truth that 4.3 million children under the age of 15 have died from AIDS.

Take the truth that there are over 18 million children who have been made orphans by AIDS.

Take the truth that sharing needles also shares infection.

Take the truth that needle exchange programs slow the spread of infection without increasing intravenous drug use.

Take the truth that AIDS is not a divine punishment for anything anyone did or did not do. If any of us truly believes that having HIV reflects someone’s worth as a human being, we had better be ready to explain why someone gets the flu or cancer or emphysema or leukemia or polio or Hodgkin’s disease or sickle cell anemia or Crohn’s disease.

The final truth I want you to take away is the truth of my survival. There are those who are surviving with HIV. There is hope.

And the truth that you can do something about HIV/AIDS: Learn about it! Teach about it! Debunk the deadly myths! Save people’s lives! Maybe 20 years from now, AIDS will be a disease of the past.