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The AIDS Exception: Privacy vs. Public Health
Round Two -- Concluding Remarks
Posted June 19, 1997


Posted by Stephen Murray:

Aside from the ignorance about the epidemiology of AIDS and about health-care provision in the world, what is most glaringly missing from Chandler Burr's article and from the Web forum concerning it is any voice of an HIV-positive person. One does not have to ask very many people to start amassing tales of breaches of confidentiality. Add a dollop of common sense and one might realize that those who do not want information broadcast are not going to take public legal action or seek press coverage that further diffuses the information.
See participants' concluding remarks:

  • Chandler Burr
  • Winnie Stachelberg
  • Tom Coburn
  • Joel Gallant

    See the introduction to this roundtable by Cullen Murphy, managing editor of The Atlantic Monthly.

    Chandler Burr
    Burr is the author of A Separate Creation: The Search for the Biological Origins of Sexual Orientation (1996) and the creator and moderator of The Gay Gene, a Web site devoted to the biological research of sexual orientation. His argument for reinstating traditional rules of public health for fighting AIDS, "The AIDS Exception: Privacy vs. Public Health" appears in the June, 1997, issue of The Atlantic.

    Winnie Stachelberg
    Stachelberg is the legislative director of the Human Rights Campaign, the nation's largest lesbian and gay political organization. She leads a team of professional advocates in formulating and advancing HRC's legislative agenda on Capitol Hill.

    Tom Coburn
    Coburn represents Oklahoma's 2nd Congressional District in the U.S. House of Representatives. He recently introduced the HIV Prevention Act of 1997 which, if it passes, would require more HIV reporting and partner notification. He is also a practicing family physician who specializes in obstetrics.

    Joel Gallant
    Gallant is an assistant professor of medicine in the Division of Infectious Diseases at the Johns Hopkins University School of Medicine and is the director of the Moore HIV Clinic at the Johns Hopkins Hospital.

    What do you think? Read other reader responses and join the debate in The Body Politic

    Visit our previous roundtables:

    "Welfare: Where Do We Go From Here?" (March, 1997)

    "Immigration: One Nation, Inhospitable?" (November, 1996)

  • If either Burr or Congressman Coburn were serious about reducing HIV-transmission, they would support universal health insurance and see that it is a prerequisite for what they propose. They should know that in this country -- UNIQUELY in this country, in contrast to other industrialized countries -- health insurance depends on employment. They should also know that it is difficult to prove discrimination based on HIV-infection, since reasons can usually be found for eliminating employees who seem likely to become expensive in terms of missed work and health-care costs. I do not see Congressman Coburn proposing greater legal assistance to those who are discriminated against for an HIV-status that becomes known, or seeking to make sure that no one loses his or her job and/or insurance if confidentiality is breached by contact tracing or other means, or seeking to increase the penalties for HIV-discrimination. The claim passed on uncritically by Burr that "we have done everything" to protect against discrimination is either deeply deluded or a cynical lie. The dangers of losing health care do not confront those who test positive in Australia, New Zealand, or Western Europe. That everyone who is tested or contacted will be treated can be taken for granted in those countries. Since it can NOT be taken for granted here, HIV-antibody testing, especially nonanonymous testing, threatens lives in the reasonable view of many. I speak from personal experience. The (small) company for which I had worked my entire post-school life (eleven years) downsized by terminating its two HIV+ staff (though we had better evaluations and had missed work less often than many of those who remained). We eventually settled a wrongful termination lawsuit, but I lost disability coverage and, after 18 months of COBRA, my insurance premiums increased tenfold with an annual deductible ten times as great as before and less coverage, including a $50,000 lifetime cap on prescription drugs (i.e., three years of triple drug combination).

    If the currently approved drugs and reasonable clinical monitoring were available to anyone tested, I might support involuntary testing, not least because people being treated are almost certainly less infective. So-called "traditional" tactics for syphilis or gonorrhea or tuberculosis included treatment, not just contact tracing. In that there is no cure for HIV-infection, treatment is much longer and more expensive, but Coburn shows no interest in making sure that those who are tested are able to receive the treatment that reduces or eliminates infectivity.

    As someone who was infected no later than 1981 and who has infected no one since 1981, I have to mention how ludicrous contact tracing would be for me. I think the duty of someone who is HIV+ (or thinks s/he might be) is to avoid doing what might infect others. If one does that, I do not think there is any obligation to tell anyone one's serostatus, although the same day I received my positive test results, I told the one person I might have infected after 1981. (To my great relief he tested negative.) To either recall or track my sexual contacts of more than 16 years ago would be difficult and useless. AIDS is not at all like gonorrhea and syphilis in terms of the speed with which symptoms appear, which is why acting as if one's sexual partners are HIV+ is more effective than contact tracing in reducing infection.

    One final point: the evidence that needle exchange reduces HIV-transmission is vastly better than the evidence that involuntary testing and/or contact tracing effectively or cost-effectively reduces HIV-transmission. (Moreover, there is no evidence that needle exchange leads to more injections or more injection-drug users.) No one should believe that someone who opposes needle exchange and explicit safer sex educational material is concerned with empirical data or with reducing HIV-transmission! The Office of the Inquisition, the Gestapo, and the U.S. Military (since the end of the First World War) have been especially interested in eliciting and recording names to ferret out networks. The eagerness to have the government collect names of those infected with HIV should be viewed with great suspicion, especially in the absence of guarantees that treatment and non-discrimination will follow co-operation.

    Posted by David Hansell of The Body, a Web site devoted to information on HIV and AIDS:

    The fifteen years or so of the HIV epidemic have seen a dramatic decline in rates of anorectal gonorrhea among gay and bisexual men. Since there has been no dramatically enhanced enforcement of gonorrhea-related reporting and contact-tracing programs during that period, the explanation for the reduction seems to fall almost entirely in the area of behavioral change, probably relating to community-wide educational interventions encouraging changes in sexual behavior and adoption of condom use.

    What does this downward trend in anorectal gonorrhea rates, achieved largely outside the "traditional" public health framework, tell us about the relative efficacy of public education versus disease reporting/contact-tracing strategies, in combatting a sexually-transmitted disease epidemic within a defined subpopulation like gay and bisexual men?

    Posted by Margot:

    Because in the early 1980s AIDS was considered a disease that affected primarily the homosexual commumity and injection-drug users -- two groups that many looked upon as "sub-classes" anyway -- the whole issue of testing for HIV and instituting early treatment was swept under the rug. Far from being a matter of protecting the civil rights of these two groups, I believe that it was the very prejudice against these groups that enabled many legislators to use civil rights as an excuse not to spend the money it would have taken to identify and treat homosexuals and drug users who carried the virus. It was only after the epidemic entered the mainstream that we started to consider the consequences of failing to treat this terrible disease as a public health issue that affects us all -- as it should have been treated from the start.

    We may never know how many people who thought they were not at risk ended up becoming infected because the AIDS epidemic has been treated as an exception. We do know that one of the tragic results of this oversight is that almost 95% of hemophiliacs born before 1980 are either HIV-positive or have already died of AIDS, and many of their spouses and children also are HIV-positive. Why? Because hemophiliacs, who rely on a clotting factor that is derived from pooled blood supplies, were until 1985 given blood products taken from paid blood donors -- many of whom were prison inmates and low-income residents of large metropolitan areas that had high HIV-infection rates. The government knew of the risks and did not require testing even of these high-risk groups early enough. And neither the govenment nor the drug companies that manufactured the clotting factor warned hemophiliacs of known risks in time to prevent widespread infection. In fact, in 1995 a government investigation conducted by the institution of Medicine found that "inadequate institutional decision-making and a failiure of leadership" within the federal government led to the HIV infection of more than one-half of the nation's 16,000 persons with hemophilia. (There are now bills before the House and the Senate -- HR 1023 and S. 358 -- that propose compassionate payments and benefit protections for affected hemophiliacs.)

    One of the hemophiliacs who was affected was Eric Kline, the son of the man I am involved with. Eric received HIV-tainted clotting factor in 1985 at age 15 and died of AIDS in September 1996. Because his family was well-informed and conscientious, they had Eric tested when they learned that he might have been exposed and found out that he was HIV-positive at about age 17.

    Eric was in all respects a healthy-looking, strapping young man until just about two years before his death, when he developed full-blown AIDS. To look at him there was no way anyone would suspect that he carried the HIV-virus. Eric also had the strong sexual urges that are pretty typical of college boys, and had he not learned of his condition it is reasonable to assume that he could have unwittingly infected any number of young women. In fact, in a journal entry that he made when he was about 20, he wrote that he had found out first-hand that alcohol really does have the effect of loosening girls' inhibitions, and he went on to say that many times a cute girl came on to him and he put on the brakes much to her surprise. He wrote, "It is a lot easier to say no when you know that you are deadly."

    Knowing that he was HIV-positive didn't keep Eric from living as full a life as he could in the time that he had, though, and he probably was able to extend his life by getting early treatment. He was well aware of the discrimination that AIDS patients faced, and he and his family did not tell even close friends that he was HIV-positive until the disease had progressed. Eric attended college, received a degree in accounting, went to work for a prominent firm, and had an active social life. When he met a wonderful girl and fell in love, he questioned whether to continue a relationship he knew might be short-lived. But when he told his girlfriend that he was positive she chose to stay in the relationship, and they got married. Because he and his wife were aware of his condition they were able to take precautions against her becoming infected. (She has been tested on a regular basis and is negative.)

    I am the mother of a 14-year-old daughter and a 10-year-old son, and I am terrified to think that they approach adulthood in a society that allows half of the people who are HIV-positive to walk around not knowing about it. I don't believe that mandatory testing and even mandatory treatment would in any way violate anyone's civil rights, and even if it did, I think that protecting the lives of large numbers of innocent people should come before protecting the rights of the individual. It is not an enlightened social conscience that keeps us from instituting mandatory testing, it is fear and the sense that this is "somebody else's problem." If the government does not make testing mandatory, more people will needlessly die. It is that simple.

    Posted by Lourdes:

    What do you do if and when AIDS-afflicted persons are driven underground in fear of prosecution and discrimination as a result of "better" public health policies? Is it simply unfortunate that there is no cure to AIDS? Will mandatory notification eradicate this syndrome from our nation without question, or will the President of the United States in 2020 hold a nationwide public apology for the injustices carried forward by the department of public health in the late 1990s? Can "enforced sex education," biotechnology, and medicine slow down the spread and progression of HIV infection more efficiently than outcasting and victimizing infected individuals? Segregation of infected people may have slowed the progression of leprosy, syphilis and other diseases, but it didn't necessarily eliminate them -- they are still prevalent around the world. What price are we really willing to pay to merely slow down the spread of HIV significantly?

    Posted by Virgo:

    Joel Gallant states that measures such as locking people up are "justifiable when an individual knowingly and willfully places the public health or the health of another in jeopardy." I would suggest that anytime that an HIV-positive person shares needles with or has intercourse with another, they are placing "the health of another in jeopardy." This is true even if the other person "consents" to the sharing or the intercourse. Yet, I have heard HIV-positive gay men say that if another gay man chooses to have sex with them, then they have no responsibility to tell them that they are HIV-positive, because the other gay man should know that they are placing themselves at considerable risk. This is rather like saying that you have no responsibility for shooting someone in the process of playing Russian roulette, even though you pull the trigger, as long as the other person knew exactly what the game was. What kind of ethic is this?

    If there is agreement that persons who engage in sex using such "ethical" principles are placing "the health of another in jeopardy," then when should steps be taken (including locking people up) to ensure that the community is protected?

    Posted by Roger F. Gay:

    There is talk in the roundtable about "mandatory testing." I admit to not spending hours in study of all the material provided for the discussion, but I noticed that this is one key issue.

    I'd like to know how "mandatory testing" would be carried out if it became a reality. Who would be tested and how would mandatory testing be enforced? And on the other hand, if a brief answer can be given to a question in the negative, how is it exactly that Tom Coburn's proposed legislation (and Chandler Burr's traditional strategy) does not involve mandatory testing? As part of the answer, I'd like to somehow deal with the problem that testing is in fact necessary in order to find out who has the disease. In other words, what then if testing isn't required? How, in brief, does Coburn expect to get anywhere?

    From Traci Watson, an associate editor at U.S. News & World Report:

    For all of the participants:

    We know how to prevent AIDS. As presented at a recent NIH conference on AIDS prevention, the city of Tacoma, Washington, for example, has kept transmission to a very low level by implementing all the strategies that are known to prevent the spread of HIV. Why aren't we as a country following Tacoma's example?

    From Nancy Shute, a senior editor at U.S. News & World Report.

    All participants acknowledge that the demographics of people newly infected with HIV are changing, and that public perception of the disease is changing, too. If you were going to manage a routine testing program, along the lines of what Rep. Coburn proposes, which populations would you target for education programs and intervention? And are we reaching those populations now?

    Do any of you personally object to being tested for TB as a requirement for employment, immigration or school enrollment? Do you object to having to take a syphilis test in order to get a marriage license? If so, why?

    Are you aware that the United States requires legal immigrants to submit to HIV and TB tests, as well as a to physical exam by a State Department-approved physician? Do you think that this is a violation of their rights? If so, why?

    What do you think? Read other reader responses and join the debate in The Body Politic.

    Roundtable Overview

    Introduction and opening questions, by Cullen Murphy

    Round One -- posted on June 3, 1997

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