Fear of AIDS Goes Beyond the Disease

A few years ago, a man I’ll call Tom went to be tested for HIV, the virus believed to cause AIDS.

Tom had reason to fear what the test might show. He is a gay man who has been sexually active. He is also a well-established physician in Orange County.

The test was positive, and today Tom is showing early signs of a disease that may take his life. Only his closest friends know.

Most of his patients are not in this group.

“You feel like you are being chased by the pack of hysteria,” Tom tells me, although he is afraid to tell me too much.

Tom fears that a patient could recognize him from some detail that might appear in print here. He is afraid that this patient might tell another, and another, and so on from there.

He is afraid that he may be forced to resign his job before adequate disability insurance is in place, losing his income en route to losing his life.

Tom is deathly afraid of the fear of AIDS.

“The main reason I am against telling patients about your HIV status is obviously personal; I would have to do it myself,” he says.

“I am not doing anything with patients that would put them at risk, but if I tell my patients that I am HIV positive, it becomes like an atom bomb. If I were really risking their lives, they would certainly have a right to know, but I am not.”

Earlier this year, the American Medical Assn. and the American Dental Assn. recommended that its members infected with the AIDS virus voluntarily avoid performing surgery or other invasive procedures on their patients, or if they do so, that they tell their patients that they are infected.

The recommendation, almost identical to draft guidelines by the federal Centers for Disease Control, came on the heels of a government investigation that found a Florida dentist probably infected three of his patients with AIDS. It appears that the dentist, who has since died of AIDS, failed to use hygiene precautions now standard in the medical field.

In addition, the New England Journal of Medicine called last week for routine screening of hospital patients, pregnant women, newborns and health care workers for the presence of HIV.

Although the Florida case is the only known instance where a health care worker may have transmitted AIDS to a patient, there have been 37 documented cases of the reverse, of patients infecting people charged with their medical care.

So when it comes to the threat of AIDS--an epidemic that has already taken more than 106,000 American lives--who has a right to know? If Tom were your doctor, or your patient, would you want to know? Should you be told that he carries the virus that causes AIDS?

The answers, imperfect, with victims on all sides, are increasingly being sought in court, through the ballot and in state legislatures nationwide. Emotions are understandably high, strung very tight. Statistics--and there are many, from many different groups--mean very little to people motivated by fear.

Nobody wants to risk being handed a death sentence merely to preserve somebody else’s civil rights.

Regardless of the odds.

I, for one, would want to know--about HIV, and a host of much more significant risks as well. The days of trusting your doctor to always “do what’s best” are long gone. I want to be the one to decide.

Should choosing a doctor be all that much different from choosing a contractor to work on your house? Or how about filling up your car with gas? We are warned of the hazards here.

True, we have been warned about so much, and so often, that it all tends to blur. But at least we are being informed.

With doctors, it’s entirely something else. Too much disclosure could ruin their careers. Not enough claims patient lives.

Does your physician abuse drugs or alcohol? His colleagues may know, but patients are not told.

Has he been successfully sued for malpractice? There is only one consumer source of information on that. This year’s “Questionable Doctors,” published by Public Citizen Health Research Group, names 9,479 active physicians who have been disciplined by state medical boards.

Does your doctor carry hepatitis B, a more prevalent and more infectious virus than HIV? Health care workers are not required to disclose this information to you, even though hundreds of Americans--health care workers among them--die from hepatitis every year.

But HIV, for better and worse, is in a class by itself.

Before I gave birth to my daughter in the fall of last year, my obstetrician asked if I would mind being tested for HIV. I hadn’t thought of it before because I am not in a high-risk group. Still, I took the test and the result was negative, as I had assumed.

Yet, in hindsight, I think part of my reason for taking the test was to put my physician at ease. I felt it might somehow better my care. I thought my doctor might worry less.

He tells me today that I was right.

“Self-concern is definitely part of taking extra precautions,” he says. “Sure, it’s great to say, ‘Try to be careful with everybody,’ but when you’re talking about a C-section especially, body fluids go everywhere . . . .

“I don’t know what I would do if I came across somebody who I knew was HIV positive. I’d certainly be worried. It’s my family also. My wife reminds me that whatever happens to me, happens to her too. I probably should think about that more than I do.”

Because, of course, accidents happen all the time.

Pearl Jemison-Smith, AIDS coordinator at UCI Medical Center, says health care workers there accidentally come in contact with HIV-tainted blood about two or three times a month.

Each case is monitored, she says. So far, no UCI health care worker is believed to have been thus infected with the virus that causes AIDS.

And from a different view, Dr. Thomas Cesario, chairman of the Orange County Medical Assn.’s AIDS committee and an infectious disease specialist at UCI Medical Center, says this:

“Doctors are human like everybody else. If we said, ‘You have to tell your patients your HIV status,’ you know what would happen? They are not going to be tested. That’s what happened with hepatitis, and it would certainly happen here. . . . “

“Doctors struggle with this issue. The question is, ‘How do we protect the most number of patients?’ There is no right or wrong. Should mandatory testing be in place for patients and their doctors?

“There is a certain amount of confusion about what the impact of that would be. We may create a class of lepers, doctors and patients, and one of my major concerns is we would lose the cooperation of those groups most at risk, thereby spreading the disease.”

Dr. Don Hagan knows this to be true. Until March of 1988, he practiced family medicine in Irvine. He is openly gay, an activist for homosexual civil rights.

Hagan thought, several years ago, that perhaps he should be tested for HIV. He put it off, however, until persistent headaches told him that something was very wrong.

In January of 1987, he was diagnosed with chronic HIV-aseptit meningitis, one of the rarer forms of AIDS. He continued to practice medicine--an affable, competent physician, his patient roster stood at about 3,500--until his physical deterioration made it difficult to work.

Still, most of his patients had no idea. He went to extraordinary lengths to keep his illness under wraps.

The partners in his medical group found out when he handed in his resignation. Hagan had contacted his attorney first. The reaction of his colleagues was pure shock. And they feared possible financial repercussions to their medical firm.

It hasn’t happened yet.

“I couldn’t tell anybody,” Hagan says. “I didn’t trust anybody. I didn’t want to risk somebody coming off half-cocked and saying, ‘Look, I’m HIV positive and he treated me years ago.”’

Hagan and others say that if physicians are asked to disclose their HIV status to their patients, then they should also be required to reveal other, more statistically significant risk factors. I have named several of them above.

“We have to come to some consensus on this issue with the public,” Hagan says, “and unfortunately, I don’t think a decision will be made by the medical community. I believe it will be made politically because of the emotional attachment and the stigma associated with the disease.”

Tom adds this:

“What is happening now with AIDS is sort of like what happened in the ‘50s with cancer. There used to be quite a bit of stigma attached to it. I think this will take longer to get over because AIDS is a sexually transmitted disease and certain subsets of society already despised by people are more vulnerable to it. . . .

“I wish I could allow you to use my real name,” he says. “I wish I could put a face on this. It would be all the more powerful. But I suppose my need for anonymity is a statement in itself.”