BRIAN HAS TWO PROBLEMS. FOR THE FIRST HE WANTS HELP; for the second he doesn’t. Brian complains that he is addicted to cigarettes. It’s bad for his health, expensive, and stinks up the car. His boyfriend hates it. So Brian has decided to quit—this time for real—using medication. That’s why he made an appointment with me.
In the course of our discussion I learn that Brian, an English major, and his partner, an actor, often pick up other men. “It’s hard to be monogamous,” he explains. Neither uses protection, and Brian has never been tested for HIV. He does not discuss HIV status with his casual partners, or with his boyfriend. The topic of safer sex makes him nervous, and he’d rather not think about it.
I hear many fascinating tales at the counseling center. Students share the intimate details of their lives and struggles, and it’s not boring. Nevertheless, once I’m behind the wheel of my car at the end of the day, my thoughts are no longer with my patients. Rarely do I bring my work home.
Brian is an exception. I can’t get him off my mind. Brian, his boyfriend, and their partners may all be, or soon may be, infected with a lethal virus.
Remembering our meeting, I realize that my face betrayed my alarm, because Brian was quick to acknowledge his irresponsibility. Notably, he also said I was the first physician to discuss this topic with him—an astonishing fact, given Brian’s openness about his orientation. I want to tell him he is endangering his life and that he must change his behavior at once. He must be tested and, if necessary, begin treatment. But I proceed gingerly, fearing that I might spook him and lose him as a patient. I remind myself that he did not present for help with this dangerous behavior, but rather for his tobacco addiction. So Brian and I discuss problem number one, but I also encourage him to limit his contacts and to use protection. We agree to meet again. Brian thanks me cordially and leaves. I remain alarmed: when we meet again, will he be newly infected?
There must be something else I can do to protect my patient. But what? I consult with a social worker on the staff who specializes in gay and lesbian issues. Maybe Stan has heard these stories too many times, because he sighs with resignation and suggests I refer Brian to a gay and lesbian health center off campus. But I don’t want to refer Brian. He is my patient, my responsibility, and I want to see this through. A colleague at the student wellness center is sympathetic, but can offer no solution. “It’s an uncomfortable ethical dilemma for physicians,” he says. “You can only recommend testing and discourage unsafe activities. Your hands are tied unless you know someone is positive.”
My hands are tied? Since when? I am often called upon to protect my patients, or those they could harm, and the law is on my side. If a patient is suicidal, homicidal, or gravely disabled I can involuntarily commit him. When a patient threatens to harm someone, the law obligates me to inform the police, and to warn the potential victim. When I see a suspicious bruise or burn on a minor, or discover that a child is not getting routine health or dental care or adequate adult supervision, state law requires that I report suspected abuse or neglect. In fact, I can suffer civil—and sometimes criminal—penalties for failing to do so.
My job is to treat and prevent disease, injury, and suffering. Rarely, my efforts may even play some part in saving a life. I am not accustomed to being told my hands are tied.
I visit the men’s health department at the student wellness center. In the waiting area, I find an assortment of fact sheets, including two about HIV/AIDS. Here I learn that “1 in every 500 US college students, and 1 in every 330 of our students may be HIV positive.” Let’s see—with our student population, that’s scores of infected people on campus. Posing the question, “Should I take an antibody test?” the flyer declares: “This is an individual and very personal decision. A number of factors should be considered, including risk for infection as well as one’s ability to emotionally handle a potential positive result.” How many students, aside from Brian, will find in these words justification for avoiding the blood test, depriving themselves of life-prolonging treatment and contributing to the virus’s rampage?
On my way out of the student wellness center, I pick up a copy of the newsmagazine of the Lesbian Gay Bisexual Transgender group on campus. How do they address this critical issue? Turning the pages, I make another disturbing discovery. While I wring my hands over Brian’s risky behavior, this publication provides coverage of a recent “Leather Weekend,” which featured among other events a “live bondage demonstration” and a “Fetish Vendor Mart.” In the travel section, a review of Manhattan bars offers this tip:
The queen of the local gay house scene, Roxy…, is a cool dance club.. .. Beware the “Balcony” at the far end of the club; it stays dark for a reason. You can be sitting up there and chilling, and the next thing you know, someone is unbuttoning your pants.
I want to scream. But there’s an epidemic raging—haven’t you heard? There are 60,000 men in New York City with HIV or AIDS!1Thank you for letting my patient know where they hang out.
I look up our HIV/AIDS laws in a guide provided by our state department of health. “The Office of AIDS is committed to assess, prevent, and interrupt the transmission of HIV,” the first paragraph reads. Sounds good. Yet what follows is more about protecting the infected than the healthy: prohibitions against mandatory testing, insurance discrimination, and disclosure of HIV status in worker’s compensation cases. HIV-infected persons, considered disabled, are also protected by federal and state statutes that prohibit discrimination in employment, housing, and public accommodations. The Health and Safety Code requires the reporting of a positive HIV test to the local health officer, using a “non-name code” to assure anonymity to the infected person. 2 The code permits, but does not require, notification of exposed contacts. The notification process, however, must not identify the HIV-infected person. So if one of Brian’s partners was HIV positive, my patient would be in a position to be informed of his exposure only if the infected person appeared for voluntary testing and if he or his physician decided to notify others.
I am not reassured.
On the Centers for Disease Control’s Web site (Division of HIV/AIDS Prevention) I find information about health education and risk reduction. 3 The document emphasizes the need for nonjudgmental patient care and reminds me that “disenfranchised minorities” are suspicious and distrustful of public health officials. In particular, “for African Americans, the Tuskegee Study continues to cast its own specter of doubt as to whether or not public health officials are truly committed to ensuring the public’s health.” Basically, they argue that “respect and regard for the perceptions of those being served will help eliminate barriers to HIV protection and will build the bridges to better health.” The behavior known to be the easiest and most common sexual route of HIV transmission, anal intercourse, is not even mentioned.
I come across an editorial in a psychiatric newsmagazine: “The Challange of HIV Testing.” The author, director of the division of HIV/AIDS prevention at the CDC, reports that in the United States there are 40,000 new infections a year, and about 900,000 people living with the disease. One quarter of these are unaware of their infection. I learn that only 10 percent of men get tested on the recommendation of a health-care provider, and that of those who are tested, many do not return to get their results. In response to this “clearly unacceptable” trend, the author suggests that providers “take time to talk regularly with patients about HIV testing and possible risk factors,” offer the test more often to certain patients, and use the recently introduced rapid tests that give results on the spot. 4
OK, but I’m afraid this won’t help me save Brian.
My next stop is at the Gay and Lesbian Medical Association. 5 Surely they are concerned about protecting their own. One of the reasons for the continuing increases in HIV incidence, I am informed, is the poor interpersonal skills of health providers. Both patients and physicians feel awkward discussing the topic. Prevention messages do not get through. On a positive note, guidelines are offered for conducting sensitive and nonjudgmental assessments by providers.
Lastly, the county department of health offers me a 113-page document: HIV Prevention Program. It appears they are following in the CDC’s footsteps, taking prevention one step further. Here, I learn that fighting oppression can prevent HIV. Racism, homophobia, AIDS discrimination, and stigma—these are the culprits permitting the deadly virus to propagate.
Racism? Oppression? Where did this come from? In medical school, I learned that there are standard procedures for fighting epidemics. Using traditional public health control tools, we, in the developed world at least, have somehow managed to bring under control horrific diseases such as cholera, polio, and syphilis. This apparently was achieved without pouring billions of taxpayer dollars into programs promoting cultural sensitivity. Yet this was in the pre-AIDS era: I took the Hippocratic oath a year before the identification of gay-related immune deficiency syndrome, as it was originally designated in 1981.
And speaking of the Hippocratic oath, I swore “to prevent disease whenever I can,” and to “remember that I remain a member of society, with special obligations to all my fellow human beings.” These responsibilities I take to heart. And that’s why, as I drive home today, I am racked by a sense of helplessness. What can I do to prevent my patient from acquiring and transmitting an infection that will likely kill him in the prime of his life? Why does the university allow students to publish material that promotes high-risk behavior, while adopting a touchy-feely approach to testing—calling it “a personal decision,” to be done only “if you can emotionally handle it”? Do they have the same concerns for a student who finds a lump somewhere—“Do the biopsy only if you have fortitude, it’s a personal decision”? Why is legislation focused on protecting the rights of the infected at the expense of the uninfected?
HIV infection is entirely preventable. It seems reasonable to advocate that those who are HIV-positive must be promptly identified and treated, and that the healthy must be protected. Fighting stigma and oppression is important, but if existing measures for combating this epidemic are not implemented, Brian—like the 500,000 AIDS victims before him—is doomed. Does anyone care?
Tom arrived on campus six months ago from South Korea, to get his Ph.D. in electrical engineering. Like many international students, he comes from a country where tuberculosis is endemic. Tom looks and feels fine, but he could still be carrying the bacteria, and at any point he could suddenly get sick. If that happens, it could be bad news for his roommates.
Tuberculosis and HIV have some things in common. Let’s say Brian has HIV, and Tom has TB. They may both be infected, capable of infecting others, and not know it. Both benefit from early detection, since they’re most responsive to treatment at that time. Others benefit too, as this is a time of high infectivity. Without treatment, they may become seriously—fatally—ill.
There are also profound differences between the two infections: their mode of transmission, incidence, and prognosis. TB is airborne, HIV is transmitted sexually, by sharing needles, or during birth and nursing. The records for my state show that in 2002, there were more than eight cases of HIV for every case of TB. Tuberculosis is almost always cured, but HIV becomes AIDS, which is fatal.
Another difference between HIV and TB is how I, as a health-care provider, am expected to manage patients at risk.
Brian has told me about his dangerous behavior. As we speak, he may be highly infectious, with a virus level that’s through the roof. My role is to urge him to be tested, to openly and honestly discuss his HIV status with his boyfriend, to limit his casual contacts, and to use condoms.
It’s another story with TB. If Tom recently lived with an infected relative and was never screened, I am expected to give him a tuberculin skin test. If it’s positive, he gets a chest X-ray. This is standard medical care. If the skin test and X-ray lead me to suspect that Tom may have tuberculosis, I am obligated by law to report him to the Department of Health, and I have one working day to do so. I must fill out a confidential morbidity report giving his name, date of birth, social security number, address, phone number, occupation, country of birth, date he arrived in the United States, race, and ethnicity. If I delay or fail to report Tom, I will be in violation of state regulations, and subject to citations and fines. I might also be in trouble with the medical board, as failure to report suspected TB—or measles, syphilis, chlamydia, meningitis, and forty-six other communicable diseases—is considered unprofessional conduct.
When the department of health gets my report, they start an investigation. A public health officer will visit Tom’s dorm within three days to identify, examine, and evaluate his roommates.
What if Tom does not cooperate? What if he considers this to be his personal problem, or he can’t handle it, or he just doesn’t care? That’s when the state steps in. There are “communicable disease laws”—these make the state responsible for preventing the spread of infectious diseases. If Tom does not show up for an appointment to be screened, examined, or treated, the public health nurse must reschedule him within a week. If he doesn’t come to the second appointment, the public health nursing supervisor and the district public health investigator are notified. If Tom no shows for his third appointment, he is served with a legal order to comply within seventy-two hours.
There’s more. If Tom has TB, and there’s reason to suspect that he is not taking his medications as directed, he may be required to have “directly observed therapy.” That means the public health nurse will visit my patient twice a week for six months and watch him swallow his pills. If Tom remains uncooperative, and all alternatives have been exhausted, the state can detain him: he can, following due process, be confined in a locked facility. Justification for such an extreme measure? The protection of public health. Whether he likes it or not, the state sees to it that Tom is treated.
And they’re right to do so. Because it’s not just about Tom, whether he is ready to discover his condition, what he prefers or doesn’t prefer. For the protection of public health against tuberculosis, the state has a long and strong arm. In addition to ordering Tom and his contacts to be screened, examined, treated, and detained, it can “isolate, inspect and disinfect persons, animals, houses, rooms, other property, places, cities, or localities.” It can take possession of a corpse. It “may destroy such objects as bedding, carpets, household goods, furnishings, materials, clothing, or animals…when the property is in its judgment, an imminent menace to the public health.”
I submit that my patient Brian is an imminent menace to the public health. I submit that for his welfare and the welfare of others, he and his contacts be required to be screened for HIV.
Why am I mandated to protect Tom, but not Brian? Why does the state send out public health officers in search of Tom’s contacts, but not Brian’s? Tom’s roommates will be informed of their exposure; representatives from the deptartment of health will show up at their door and tell them all about it. Brian, if he ever gets around to asking, will just have to trust his boyfriend to tell the truth. And speaking of trust, I regret to inform you that when it comes to HIV, people lie.6
Come to think of it, if standard public health measures had been applied to the control of HIV, perhaps my patient might already have been tested and on drugs that might add years to his life. Isn’t it worth the risk of feeling judged?
Brian and Tom are both potential victims, as well as carriers, of disease. 7 I am their physician, ostensibly responsible to the same degree for each of them. But look at the contrast: with Tom, the steps I follow are defined and enforced. For carelessness, I face citations and fines and my patient faces a court order. So Tom will be treated, and he’ll be OK. But with Brian, I have no one to contact, no report to file. Brian can keep going like this for years, until he’s able to “emotionally handle” bad news. And by then, the news may be really bad. In this country, HIV infection is generally discovered at an advanced stage, when treatment options are narrower, and in most cases less effective. 8
An alien arriving on our planet and surveying the situation would conclude we care more about Tom and his friends than Brian and his. He’d be astonished to learn that this perplexing state of affairs is the result of gay activism during the early years of the epidemic. At the time, traditional public health measures, like mandatory reporting of cases by name and enforced partner notification, were seen by the gay community as an invasion of privacy; they waged a battle against public health officials, and they won. 9 Since then, HIV has had a special status among infectious diseases: voluntary and anonymous testing, no partner notification. 10
More than twenty years later, this remains the case. 11 Welcome to the bizarre world of politically correct medicine, where I’m mandated to report Tom, but can only talk with Brian—without being offensive, of course. Add to this the PC message that “anybody can get HIV,” the notion that it’s an equal-opportunity virus, and what do you get? A scenario where high-risk Brian underestimates his danger, 12 and low-risk Sophia, whom you’ll meet next, exaggerates hers.