Lives Left in Limbo by Test for AIDS

One day in the shower not too long ago, Martin (not his real name) cut himself shaving.

With the water cascading over him, he froze, just staring at the blood and thinking about the reflection of his own mortality that dwelt inside that small red trickle. “I was just watching the blood and I kind of freaked out,” Martin said.

Since the day his doctor told him he had tested positive for antibodies to HIV, the virus thought to cause AIDS, also known as HTLV-III, Martin has “freaked out” a lot. He has broken down and cried, he has hit walls, he has thrown things; he just can’t stop thinking about it. Worst of all, he has been hiding--from his father, from dates, from his employer and, for a month, from his mother.

Of course at age 26, Martin has never had to deal much with the idea of dying. In high school, he even failed a course on death.

“I bombed out of class ‘cause I didn’t deal with death, mine or anybody else’s,” he said. “Now I’ve had to deal with that directly. I’m looking death straight in the eye.”

And he doesn’t dare blink.

Martin is one of hundreds of thousands of Americans stuck in a medical, legal and emotional no man’s land. They don’t have acquired immune deficiency syndrome, but as many as 30% of them will eventually develop it or AIDS-related complex, and in the meantime they all find themselves in danger of being fired, losing medical insurance and facing a lifetime of fear and discrimination.

Bleak Picture

And now, thanks to the quarantine specter raised by Proposition 64 on the November ballot, AIDS rights activists paint a picture of a bleak future that could have been stolen from the pages of George Orwell’s “1984.” Backed by supporters of political extremist Lyndon H. LaRouche, Proposition 64 would restrict the activities of AIDS victims.

“I talked to a Jewish woman who was in a concentration camp in Germany (in World War II),” Martin said, “and you know, she said they said it could never happen there either.”

So far, California has seen more than 5,300 cases of AIDS and state health officials estimate that around 300,000 people have been exposed to the AIDS virus. (Nationally, more than 22,000 people have contracted AIDS--about half that number have subsequently died. The Centers for Disease Control in Atlanta estimates that 1 to 1.5 million Americans would test positive for the HIV antibody.)

Currently there are two AIDS antibody blood tests in use in California. When patients test positive on the first one, the ELISA test, they are given the second, a more costly and difficult test called the Western blot. The tests do not detect the AIDS virus, but the presence of antibodies to the virus.

First Considered Unreliable

Although these tests were considered unreliable when they were first introduced in the spring of 1985, today the Centers for Disease Control reports they have a greater than 99% accuracy rate.

Of those who test positive, three out of 10 will develop AIDS or AIDS-related complex within five years. Even for those who do not develop a full-fledged case of AIDS, those exposed to the AIDS virus can demonstrate such uncomfortable symptoms as weight loss, diarrhea, coughing, headaches, night sweats and swollen lymph nodes.

But perhaps the worst symptom is fear.

“When I told a few friends, they immediately took--and I’m not kidding you--a few steps back,” said Ron Nevarez, 27, who founded and runs an Orange County support group for others who have received positive results on the antibody test, the first such group in the state. It is run out of the Gay and Lesbian Community Center of Orange County, based in Garden Grove. “When I first told my parents, my dad first said, ‘So what does that mean, are you going to die or not?’ He kept saying that, didn’t want to listen to anything else. And my mother, her only reaction was: ‘You’ve known for 2 1/2 years, and you’ve still come over here and hugged us and kissed us?’ ”

Reactions to test results run the emotional gamut, counselors say. There are those who isolate themselves from everyone around them; some deny the test results, and still others are angry and suicidal.

Sometimes there is the additional consequence of being unwillingly forced out of the closet by a positive test result.

“A lot of the time the fellows are not ‘out’ as gay men,” said Judith M. Doyle, a Long Beach psychotherapist who has counseled those who have tested positive and is herself active in the gay rights movement. “What they’re dealing with is not just the possibility of a life-threatening disease but also the exposure of their entire life styles. For them, a lot of times suicide is the answer.”

Deny Results

Other times they put the test on the back burner, ignoring it because they’d rather hide the fact that they are gay, she said.

“The main thing they’re looking for is support,” said Jennifer Martel, who works with the Orange County support group. “I mean, all this is new. We don’t have any guidelines of what to do and what not to do. This is the pioneer group and all we can do is take good notes.”

Meanwhile, as if the medical and emotional dilemma weren’t bad enough, those testing positive can also find themselves stuck in a nasty legal bind, especially with life or medical insurance.

Although California law prohibits insurance companies from discriminating on the basis of the antibody test, many companies have gotten around this restriction with something called a T-cell suppressor test, which measures the general health of a person’s immune system. If the test indicates a weak immune system, insurance companies have been known to withhold a policy, even though the test is not geared specifically to AIDS antibodies. Someone with a genetically weaker immune system could be singled out as well.

Zero Protection

Those who test positive have “zero” protection on medical insurance, according to Marjorie Rushforth, a Santa Ana attorney who often deals with AIDS discrimination cases.

“It could be seen as a case of our society abandoning people who have come into contact with this disease,” she said. “Private insurance is literally drying up for the single man over 25.”

Aside from the T-cell suppressor test, insurance companies often use age, marital status, location of residence and any other possible indicators to weed out potentially risky policyholders. “If someone puts down a same-sex beneficiary, that’s a red flag to them,” Rushforth said.

And according to state investigators, the companies have a good chance of getting away with it.

“We’re on pretty shaky ground once we start arguing with company doctors,” said Peter Groom, a senior attorney on the state insurance commissioner’s staff, who has been handling insurance discrimination cases for the state for more than a decade. “There’s no way to really jump on something like this because it’s so difficult to prove. In my heart of hearts I may believe this, but they always have a plausible excuse.”

Consent Needed

Under the California Health and Safety Code, the AIDS antibody test cannot be given without consent. However, some lawyers contend this too is violated by “private physicians who sneak the test in when they’re ordering other tests.”

John, who would not give his real name because of pending court action, is one example.

Embroiled in a worker’s compensation suit against his former employer, John agreed to be examined by an independent doctor for the trial. Among a battery of other routine exams, this doctor included the AIDS antibody test and, when the results came back positive, included that item in his report back to the man’s former employer.

John didn’t find out until the doctor’s secretary happened to mention it to him.

“As a little god, he thought it was his right to order any damn test he pleased,” said John’s attorney. “It was just out of pure mean-spiritedness . . . (and) had nothing to do with his injury.”

Retracted Findings

Informed that he had violated the California code, the doctor consulted an attorney and then retracted the findings from his report, according to the attorney. But it was too late; as many as 20 people already knew--including the doctor’s secretary--and John intends to sue.

“It’s just caused my life to go upside down,” said John, who has been out of work for two years. “I almost literally went off the deep end. If I had not had so many supportive people in my life, I don’t know what would have happened. This doctor has literally ruined my life.”

But while the law may be on John’s side now, legal experts say all bets are off if Proposition 64 is passed in November.

According to most analyses, Proposition 64 would put pressure on state health officials to quarantine AIDS victims, order mandatory blood testing of high-risk groups and ban those who test positive from schools and food-related jobs.

Although no one is quite sure of the initiative’s impact--or even if it will pass--it has frightened a large section of the homosexual community. “People are wondering, ‘If I tell my doctor, will he report me to the state? If I tell my doctor, can I lose my insurance? Can I lose my job?’ ” Nevarez said. “Right now we do have protection. Right now we can get the test anonymously. Right now nobody can touch us.”

Hopes to Raise $3 Million

The No on 64--Stop LaRouche coalition hopes to raise almost $3 million to defeat it. So far, a broad, bipartisan group of politicians and Hollywood stars has denounced the measure, from Sen. Alan Cranston (D-Calif.) to his Republican opponent, Rep. Ed Zschau (R-Los Altos), and from Bob Hope and Gregory Peck to Elizabeth Taylor and Shirley MacLaine.

But potentially more threatening than the medical and legal impact is the danger the proposition would pose in driving the disease further underground.

“If the proposition does pass, then we’re in a lot of hot water, and it would bury the disease even further. . . . Nobody’s going to report it or go in for treatment,” Nevarez said.

An animated, well-spoken man, Ron Nevarez is “together” about his condition. But despite his composure, Nevarez admits to times of doubt.

There are, he says, those 15-minute periods of fits, when his anxiety reaches a peak and he can’t help but hit a bed, scream in an isolated field or break bottles in a deserted alley.

“If you don’t let all that anger and frustration out, it’s just going to eat away at you,” he said. But he limits himself to 15 minutes. “After that I kick my butt and say ‘OK, stop. You’re not doing yourself any good.’ It’s a little like a teapot--every once in a while you need to let off some steam.”

So little information is available to those who test positive and their friends. They do know they may never develop a single symptom of AIDS; they know if they practice “safe sex,” they can be relatively sure they won’t pass the virus along; they know they may live to a ripe old age.

But hanging on the edge of that precipice for the rest of their lives, it is what they do not know that is frightening.