Positive Result Could Be Shock : AIDS Testing Dilemma: To Know or Not to Know

For Chris, a 38-year-old homosexual who teaches school in Los Angeles, learning that he had tested positive for exposure to the AIDS virus was a mind-numbing shock.

He awakens every morning in fear, terrified that every cough or bump on his skin means the onset of the fatal disease. He is afraid of what he might find when he examines himself in the mirror.

“My first reaction was: I am going to die,” he said. “Trying to convince myself otherwise has been very difficult. I’d been practicing low-risk sex before, so there’s no change in what I’m doing or what I would have done. The only difference is that my anxiety level is higher. I think I would rather have not known.”

Jim, a 35-year-old gay postal employee in Los Angeles, also tested positive. But, despite his initial stress, he believes the knowledge “served to clear up a great deal about the situation” he did not know before.

“I’ve changed my behavior,” he said. “Most important, my chance of exposing anyone else has been eliminated.”

The differing emotions of Chris and Jim--not their real names--illustrate but two responses to a frightening and many-sided dilemma that those at risk of the infectious fatal disease have been struggling with since the AIDS antibody test became available last year: Is it better to take the test and know--or not know?

In recent weeks, the national debate has escalated along with the personal one, ever since federal health officials recommended that persons in high-risk populations--male homosexuals and bisexuals, intravenous drug users and prostitutes--voluntarily undergo the procedure.

The controversy over screening pits a well-meaning but unproved public health measure to stop the epidemic against the equally uncertain social and psychological ramifications for individuals who decide to take the test.

“People cannot understand the tremendous anxiety this test creates if it is positive,” said Dr. Neil Schram, chairman of the Los Angeles City/County AIDS Task Force. “From that moment on, they cannot get a new rash or cough or bump without being terrified and thinking: ‘Oh my God, is this it?’ ”

Exposed to Virus

A positive test does not mean that an individual has AIDS or will get the disease, but it means that he has been exposed to HTLV-III, the virus that causes AIDS. No one knows how many people with positive results will contract AIDS. However, a person who tests positive is presumed to be infectious.

AIDS, or acquired immune deficiency syndrome, destroys the body’s immune system, leaving it powerless against otherwise rare disorders. It is spread through intimate sexual contact--with the exchange of bodily fluids such as semen and blood--and through the sharing of unsterilized hypodermic needles.

More than 18,000 persons have been stricken, and half of them have died. Thus far, there is no treatment for the ill and no preventive vaccine available for the healthy.

Education Urged

Gay rights and other groups oppose the recommendation made by the Public Health Service, insisting that a decision to take the test is an individual one and that education is still the best way to stop the epidemic.

In addition, they believe that mass testing could have damaging social implications if it is not conducted under strict anonymity and with sensitive counseling for those who test positive.

Although the government has recommended strict confidentiality--or anonymity--and opposes testing without counseling, many critics are worried that confidentiality cannot be guaranteed and that counseling is not always available or effective.

“One of the failings of the Public Health Service is that it treats testing in a vacuum,” said Jeff Levi, political director of the National Gay Task Force.

‘Very Traumatizing’

“If a person gets tested and a month later applies for insurance and is asked on the form: ‘Have you ever been tested for HTLV-III?’, a clear public health purpose has run up against an individual’s need for health insurance,” Levi said. “We also don’t know how individuals will be able to handle this information--to be told you’ve been exposed to a virus that can be fatal is very traumatizing.”

Some critics also fear that the government is laying the groundwork for mandatory testing.

“There are very good public health officials who genuinely want to see the spread of the virus stopped in the most effective manner,” Schram said. “The problem is defining the most effective manner.”

He continued: “The goal of public health officials is to identify people who have been infected and attempt to keep them away from people who are uninfected. What they fail to understand is the paranoia about the test in the gay community.

‘Strategy Will Fail’

“The goal for this epidemic should be to stop the sexual spread of the virus by counseling on low-risk sexual behavior. The government’s strategy will fail. That’s why I feel this will lead to testing of everybody.”

But Walter Dowdle, the federal coordinator for all AIDS programs, counters that the Public Health Service has “never discussed mandatory testing,” adding: “We have never said: ‘It’s going to be voluntary today and mandatory tomorrow.’ It’s inconceivable.”

The government’s approach, Dowdle said, is based on the presumption that an individual who knows his status as a result of the test is “in a position to make choices and make some intelligent decisions” about his behavior. “If you don’t know, you may waver back and forth,” he said.

‘Low-Risk’ Behavior

The Public Health Service believes that persons who test negative will be motivated to remain that way by practicing “low-risk” sexual behavior, while those with a positive result will take precautions against infecting others.

“It’s hard to convey the frustration we feel because we have no treatment,” Dowdle said. “One of the things we can do is help people help themselves, both in the sense of their own well-being--if they test negative--and in preventing spread of the virus to others if they knew they were positive.”

Levi, however, said the recommendation “assumes that individuals must have the test before they will practice safe sex--and that just isn’t so. Individuals who already practice safe sex don’t really need the test.”

Schram said that when his patients ask whether they should take the test, “I ask if they are practicing low-risk sexual behavior.” If the answer is yes, he advises against the test.

Contributing Factors

He believes, as many do, that factors in addition to infection by the virus may contribute to the onset of AIDS--meaning that persons who already have been exposed still may be able to decrease their chances of getting AIDS by taking certain measures, including practicing safe sex.

“If individuals practicing high-risk sexual behavior think a test result--regardless of whether it’s positive or negative--will help them practice low-risk sexual behavior all of the time, then I would support their taking the test, provided it was anonymous and accompanied by appropriate counseling,” Schram said.

One gay man in Washington said he would take the test only under certain conditions. “I’ve thought long and hard about it,” he said. “I would only take the test for the following reasons: if I were going to father a child, if I were going into the hospital for some kind of therapy that could be dangerous to a compromised immune system or if I were going to change jobs from a group health insurer to an individual policy.”

The man, whose current relationship has lasted nearly eight years, added: “I just can’t think of anything I’d do differently than I do now. But I don’t know what I’d do if I were single.”

Change Minds on Tests

Psychologists at UC San Francisco who have been studying 824 gay and bisexual men in San Francisco for the last 2 1/2 years said that in November, 1984, almost 70% of their sample said they intended to take the test when it became available. But six months later, in May, 1985--when testing sites were about to open in the area--the figure had dropped to 22%. By last November, the figure had risen to 34%.

“It’s a very difficult psychological conflict: the anxiety of not knowing versus the anxiety of knowing,” said psychologist Stephen Morin, assistant clinical professor of medicine at UCSF and one of the co-authors of the study.

Of the 66% who said they did not want to be tested, Morin said, “most cited concern about the test’s lack of meaning, confidentiality issues and wanting to avoid the anxiety associated with knowing their antibody status.”

The psychologists are now examining whether test results make an impact on an individual’s sexual behavior.

Doctor Takes Test

Dr. Paul A. Volberding, director of the AIDS clinic at San Francisco General Hospital, is not a member of a high-risk AIDS group, but he took the test after he began treating AIDS patients. His test result was negative.

“I was sure I was infected,” he said. “When I found out the answer, I was incredibly relieved. If I had been positive, I would have felt terrible. But I still think it was better to know.”

Volberding said that an estimated one of every two gay men in San Francisco has tested positive, but that “the debate in the gay community here has missed the point that one out of every two is also negative.” To argue against the test, he said, is to “deny that person a chance to be reassured about his life and health.”

‘True Social Problems’

He acknowledged that “there are true social problems that result from being tested,” but “more and more I find myself arguing for testing in more situations.”

Psychologist Morin said he thinks the Public Health Service has failed to examine the total picture.

“It is probably irresponsible to make those kinds of recommendations in a blanket way,” he said. “There are people for whom the testing can be very beneficial, and there are also some for whom it can be quite harmful. But without that recognition, the whole thing won’t work.”