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The AIDS Exception: Privacy vs. Public Health
Round One -- Response
Posted on June 3, 1997


Winnie Stachelberg and I agree that HIV prevention is "a question of public health." However with this epidemic we have focused almost exclusively on the rights of those infected to the detriment of the uninfected. This non-traditional approach has put the public's health at risk.

For sixteen years we have combined legal protections with a social-marketing campaign that has created an epidemic of ignorance. We have all cited the fact that more than half a million Americans are unaware that they are HIV-positive. As a result, they are missing out on medical care and unknowingly infecting others. The CDC estimates that 40,000 new HIV infections occur annually, but without reporting we cannot determine whether this number is going up or down.

Those arguing for a non-traditional response have vehemently argued against "mandatory testing." While this is not addressed by my bill, in certain circumstances mandatory testing does make sense. Blood donors, for example, are mandatorily tested, as are applicants for the military, the Job Corps, and the Peace Corps -- with all HIV-positives having their names reported without adverse consequences. Many in the AIDS community opposed all of these measures, predicting awful scenarios that never occurred.

The identities of individuals with HIV are already known by many government agencies. Many who seek treatment rely on the assistance of Medicaid while others participate in treatment trials. In so doing their names are often recorded. Every state in the nation currently reports AIDS cases. A key criteria for defining AIDS is when a patient's T-4 lymphocyte count falls under 200. What is the difference between a T-4 count of 199 and one of 201? We do not hear an outcry saying that any of the above reporting is wrong. Why are some government-kept lists acceptable while others are not?

My bill does not specifically require name reporting. People could use pseudonyms rather than their names as long as they could be located by their public-health department.

In respect to the syphilis epidemic that Stachelberg cites, today we have the lowest number of syphilis cases since the 1950s. Public-health officials credit aggressive partner notification as one of the fundamental means of accomplishing this dramatic reduction. In denying the role of partner notification in syphilis's decline, Stachelberg discredits her arguments.

Stachelberg says that the AIDS community will remain opposed to more widespread testing, reporting, and partner notification since it is not convinced that these are good programs. The community is not as monolithic in its thinking on this issue as she may believe. Just this past month individuals from Americans for a Sound AIDS/HIV Policy (ASAP) and ACT-UP participated in a congressional briefing to support such efforts.

To quote Shepherd Smith, founder of ASAP, "it has been a tragedy to watch many in the AIDS community oppose measures that would ultimately protect them and their friends from the brutality of this epidemic. The false arguments used against the implementation of traditional public-health interventions increasingly have less and less validity and fewer and fewer advocates. It is only a matter of time before sound AIDS/HIV policy prevails."

I would also point out that many state and community prevention-planning committees -- whose memberships are diverse -- are supportive of these practices. Those who have experienced the benefits of early diagnosis as a result of reporting and notification are becoming more vocal in their support for such programs.

Activists did not protest the Americans With Disabilities Act (ADA) by calling it a one-size-fits-all solution for those with HIV and other disabilities. No one claimed that this was an issue that would be better left to each individual state or community. It was deemed that the scope of the problem was so broad that it needed a national solution. I believe that the HIV epidemic also needs a national solution.

To answer Chandler Burr's question about the part of my bill that covers doctor-patient relations, physicians should ideally have the right to test any patient. This protects patients because it assures that any procedure performed is made with knowledge of patients' HIV status, protecting them from unnecessary complications. If patients refuse to be tested, they, not their physicians, will suffer the consequences. Where invasive procedures are concerned, physicians are placed at risk and should have the right to take added precautions.

I do not support needle-exchange programs because they undermine our anti-drug message and have not been proven to reduce HIV transmission. Injection-drug users who participated in Montreal needle-exchange programs were two times more -- not less -- likely to become infected with HIV than those who did not. Furthermore, linking drug addiction with HIV may be politically attractive to some but would undoubtedly create additional undesirable effects.

In response to Dr. Gallant's answers to the questions posed in the introduction: The HIV Prevention Act does not mandate involuntary testing of individuals except in cases of rape and sexual assault. The programs established under this Act will rely on the voluntary cooperation of individuals in providing names of potentially infected contacts for notification. This is now being accomplished successfully in twenty-six states.

Finally, destigmatizing HIV is a laudable goal. Much of HIV's stigma is related to the public's fear of the disease. As the public learns more about HIV and as the epidemic comes under control, much of this fear will dissipate. Along with education and research, the HIV Prevention Act will help bring this about.

What do you think? Join the debate in The Body Politic.

Roundtable Overview

Introduction and opening questions, by Cullen Murphy

Round One  -- posted on June 3, 1997

Round Two -- posted on June 19, 1997

Copyright © 1997 by The Atlantic Monthly Company. All rights reserved.
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