Why, Ignoring What They Know of AIDS, Won’t They Listen Until It’s Too Late?

To many people the statistics on how many Americans are estimated to be infected with the AIDS virus, or will develop AIDS, have little personal effect. But to health workers who care for patients with AIDS or people infected with the AIDS virus the statistics are as visible as real people. Because the AIDS epidemic continues to be accompanied by an epidemic of denial and denial leads to illogical behavior, we can see how the virus is likely to continue spreading.

That reality is extremely disturbing to see.

I recently counseled a number of people newly infected with the AIDS virus and discussed with them how their infection is likely to have occurred. It is very frustrating to see how difficult denial is to overcome. If only they had accepted the reality that they were at risk, then they wouldn’t have been infected. Yet many people cannot seem to emotionally embrace what their intellect tells them--that anyone infected with AIDS, even someone whom they love, can pass the virus if high-risk behavior takes place.

I want to scream to my recently infected patients “why couldn’t we have gotten to you before you were infected?” but of course it’s too late to yell at them. And other than ineffective yelling, how can I get the message across to those who are uninfected but continue behavior that places them at risk?

Serious questions are raised by these observations, especially since the patients whom I will describe are well educated about how the virus is spread. It is even more frightening to consider what we face in lowering the risk for those who are not well educated about AIDS.

I recently saw a gay male couple for the first time. In 1986 they had been tested, as a couple, for evidence of infection with the AIDS virus. One of them tested positive and the other negative. The latter continued unprotected receptive anal intercourse with his infected partner because, as he explained, since they were already doing it and he was negative it must be OK. Sadly, in 1987, his test was positive. Why do we fail so miserably so often to effectively counsel people who test negative? How can we teach physicians to counsel uninfected patients when so many physicians still have difficulty counseling those who are infected--a more obvious task? Why does it seem so often that gay men stop practicing high-risk sex only after they become infected--to protect others?

I saw a heterosexual couple where the woman had presumably been infected through a blood transfusion. Her husband tested negative. In spite of counseling by the Red Cross and me, and a brochure that I provided to them on condom use, they acknowledged that they were not using condoms in spite of the wife’s urging her husband to do so.

Then I saw a gay man who was in his early 20s. I had to tell him that he had a positive test. It is difficult to describe how devastated he was. When I asked him why he still practiced high-risk sex he replied, “I didn’t think it would happen to me.” How can we convince young people that this disease can happen to them?

Another patient practiced low-risk sex only. However, when he was under severe stress--perhaps every few months--he got drunk and engaged in high-risk sex. The first few times this occurred he got tested afterward--and was negative. The last time his luck ran out. How can we deal with alcohol and drug abuse that contribute to high-risk sex in some people?

In San Francisco, where the most dramatic changes have occurred in sexual behavior--primarily among gay men--two things have been most helpful in overcoming denial: knowing somebody infected with AIDS, and being acquainted with small groups that encourage low-risk sex practices.

How can we reach uninfected people and have them talk to someone who is infected so that it will be easier to believe that it can happen to them? (Part of the problem is that many of the individuals who are infected hide that information even from friends, family members and co-workers for fear of rejection.) The concept of dividing the millions of people whose behavior puts them at risk for AIDS into small groups seems unworkable. How will we develop effective alternatives?

There is increased acknowledgement that intravenous drug users must be reached to protect them, their sexual partners and their children. How will we provide drug programs and sexual counseling for hundreds of thousand of IV drug users?

It is with incredible sadness that I realize that because the questions are infinitely better than the available answers, there will be a lot more grief and a lot more suffering for a lot more people until there is a medical solution to AIDS.

While medical science works toward the solution, who will provide better answers to these questions?