Names Reporting... AIDS Treatment News


More Attention to HIV Reporting As GMHC Changes Policy

by John S. James___ AIDS Treatment News


On January 14 the Gay Men's Health Crisis, the nation's largest AIDS service organization, announced that it had changed its position and now supported a new monitoring system to report cases of HIV infection in New York State, through a system of "unique identifiers" for patients (instead of patients' names) to provide the best privacy protection (see "AIDS Group Urges New York to start reporting of HIV," The New York Times January 13, page 1). Many other large and small AIDS organizations remain strongly opposed (for example the San Francisco AIDS Foundation). The push for reporting cases of HIV infection to government agencies has developed great momentum in the last few years, and it is now widely believed that HIV reporting will eventually become required in all states, probably by name. Therefore the AIDS community needs to analyze the considerable concerns about and objections to names reporting, to be able to propose ways to reduce the harm which is feared.

Today all states require doctors and clinics to report cases of AIDS. About half the states also require them to report HIV infection; however, the states where most people with AIDS live, including New York and California, do not. A handful of states have outlawed anonymous testing clinics. But everywhere in the U.S. it is possible to test oneself privately, by using the FDA-approved HIV test kit from Home Access Health Corporation, the only approved HIV home test kit currently available in the U.S. The retail price is about $40.

The GMHC's main arguments for HIV reporting are to use the data collected to help provide treatment for people infected, and to design better prevention programs to reduce new infections. Another prominent argument from others with a different ideological position is to end "AIDS exceptionalism" so that HIV is not treated differently from other reportable diseases such as syphilis--even though there seems to be little evidence that such "traditional public health measures" ever were effective.

GMHC proposes a number of safeguards, including involving affected communities in developing a new surveillance system, assuring strong privacy safeguards, not linking HIV surveillance to non-surveillance activities like mandatory partner notification or the criminal justice system, and preserving free, publicly funded anonymous testing. It also calls for federal and state confidentially protection for medical records [which today are far more accessible and open to abuse than the surveillance records kept by state government health agencies]. On January 16 GMHC, several other AIDS organizations, and the American Civil Liberties Union held a press conference to urge that coded identifiers, instead of names, be used in any HIV reporting system in New York State.

Most of the concerns about HIV names reporting focus either on loss of confidentiality and resulting discrimination, or on deterring people from being tested for HIV. Some of the dangers are:

* Protection from discrimination through the Americans with Disabilities Act (ADA) is not assured for persons with HIV. While the ADA certainly covers persons with AIDS, a federal appeals court in Virginia ruled in August 1996 that it did not cover discrimination due to asymptomatic HIV infection. That ruling applies to only a few states, and the issue will probably go to the Supreme Court, but as of today it is the highest court ruling on the matter. Apparently it means that people can be fired, evicted from their apartment, denied a mortgage, etc. simply because they have HIV (unless they also have AIDS-related symptoms and would therefore be protected by the ADA). This result undermines the common argument that mandatory reporting should be more acceptable, now that discrimination protection is in place.

* Many people will avoid being tested if they cannot do so anonymously. Both legal and undocumented immigrants reasonably fear deportation, unless they are sure that the surveillance data will not be used for such purposes--and how can such assurance be reliable? Anyone may be concerned that, if the ADA is ruled not to apply to asymptomatic HIV, there may come a time when they have to say they are HIV negative to avoid losing a job, mortgage, or something else for which they are otherwise qualified; therefore they might think twice about creating an official record that could prove they had lied.

* Mandatory names reporting of HIV test status could make it harder to recruit HIV-negative volunteers for vaccine trials-since most vaccines will cause people to test positive, even though they are not infected.

* Supporters of HIV surveillance have not adequately explained to the community the hoped-for benefits; most of the AIDS community has little concrete picture of how HIV reporting could contribute to anyone's health. It is hard to see how better data will result in more people getting treatment, since it will not increase the number who know they are HIV positive (and may even do the opposite, as some people will be deterred from being tested). Better data might or might not result in more access to care, through more or better targeted care dollars. The new surveillance data may well improve prevention efforts, but just how has not been well explained to non-professionals.

The GMHC policy change came as a surprise to many other AIDS activists in New York--suggesting lack of broad community dialog and education. Given the lack of consensus, it is not surprising that many grassroots activists believe that the real organizational incentive for HIV surveillance is money--to improve the funding stream by making sure that cases which could justify additional payment are not missed.

A related concern is that government agencies may want the data in order to avoid paying multiple organizations for different services to the same client. Ultimately this might force consolidation of many small AIDS organizations into a few large ones, reducing participation and increasing the remoteness of "AIDS Inc." from those it serves.

* It also does not help that outside of the AIDS community, much of the case for surveillance has been fueled by hostility, not pragmatism--for example, right-wing calls for an end to "AIDS exceptionalism" as if the issue is special privileges or favors that should be taken away on principle, by imposing a far-reaching policy change with no need to show any actual benefit.

The larger issue is that most AIDS policy so far has been built on a fundamental premise of involvement and voluntary cooperation of those infected, instead of on coercion. This voluntary approach has worked well. HIV surveillance does not necessarily threaten this spirit. But it will be a threat if imposed without the meaningful consultation and discussion which could bring unintended consequences to light.


John S. James

AIDS Treatment News



see: Names Reporting: Activists' Responses


see also:

Myths and Facts about HIV Names Reporting

Congressional Legislation (The Coburn Bill)

NAMES News Media Clips