AIDS Report May Cause Suffering Where No More Is Due

I’d been thinking about the news when Randi Weber called. The news, about AIDS, was mixed.

A report just issued by the National Research Council suggested that AIDS activists and researchers, and the media, have been crying wolf about this disease. It said that unless you’re part of the underclass--or as the report called it, “socially marginalized groups”--AIDS will not unduly inconvenience you.

Randi has been unduly inconvenienced.

AIDS will “disappear,” the report said, “not because, like smallpox, it will have been eliminated, but because those who continue to be affected by it are socially invisible, beyond sight and attention of the majority population.”

I talk to Randi a lot, pray for her, and I think about her more. We met two years ago when I wrote about her here. She is dying of AIDS.

There has been some consternation about this AIDS report, which is 300 pages long. The 11 people who authored it--among them, sociologists, ethicists, a historian, a law professor and an AIDS researcher--are not kooks. The council is part of the National Academy of Sciences, a private organization chartered by Congress.

Chances are good that the Clinton Administration will take a serious look at this report as it reviews the AIDS policies and funding levels that have been in place during 12 years of Republican rule.

Randi and I didn’t talk about the report. Arthur Ashe’s name, however, did come up.

“I took it real hard when Arthur Ashe passed away, because he got it in the same year,” Randi said. “He was an inspiration to me.”

Blood transfusions during surgery--Randi’s to remove a brain tumor, Ashe’s to repair his heart--infected both of them with HIV. The year was 1983.

Randi looks upon her AIDS as just one of those things--unfortunate, of course, but with Randi, there is always another, upbeat spin. Arthur Ashe was like that, too.

If she hadn’t had her brain surgery, for example, Randi says she wouldn’t have lived these past 10 years. She wouldn’t have turned 40, she wouldn’t have seen her granddaughter born. There are many other things, Randi says, that she has learned to let go.

The authors of the council report say that their findings should not be interpreted as license to treat the AIDS epidemic any less seriously, but they compare it to the “forgotten epidemic” of influenza, from 1918 to 1920, which “left almost no mark on the social institutions and practices of the time.”

“Predictions of the imminent collapse of the health care system due to the (AIDS) epidemic, for example, now look shrill,” the report said.

Advocates for people with AIDS are worried about this report. Misinterpretation is a word that is in wide use.

The study’s authors caution against misinterpretation, too. They say that although AIDS will continue to be ghettoized among gay men, drug users, the poor and the undereducated, groups with “little economic, political and social power,” America should not turn its back on the weak. (The growing clout of the gay-rights movement is not explained.)

Other AIDS experts, including those of the National Commission on AIDS, disagree strongly with this report. They say the disease is spreading into mainstream America, slowly and steadily, ravaging lives. They say we should warn our kids.

I plan to warn my own.

I’ve met too many young people, not poor, not undereducated, not drug users and not gay, who are carrying HIV. The term “socially marginalized” must ring especially hollow to them.

Randi Weber is a religious woman, very spiritual, intent on the good. Her troubles--with her health, her ex-husband and her daughter, for a start--would have felled lesser souls. Yet Randi is forever telling me of all the “phenomenal people” that she’s met. Listening to her, it is I who feel soothed.

“Life is worth everything,” Randi told me the last time we talked. “But your body does get tired. Still, you don’t ever give up hope.”

The AIDS specialist who had been treating Randi for all these years recently turned her files over to someone else; he and Randi had grown too close.

Randi’s body has been breeding opportunistic afflictions with strange, exotic names. It seems it is always something new.

“This may be my miracle,” she said. “My heart could just stop one night and I wouldn’t wake up. That would be a blessing. I wouldn’t suffer.”

Let us hope that “misinterpretation” of an AIDS report, whether over politics or dollars or both, doesn’t cause any more suffering that is undue.