HIV tests should stay anonymous

December 09, 1997|By Mubarak S. Dahir

IN THE NEXT few months, the HIV epidemic could take a drastic turn that could dangerously alter the course of the disease in much of the United States. But the change has nothing to do with the biology of the virus. It has to do with its math.

The U.S. Centers for Disease Control and Prevention are on the verge of making a ''recommendation'' that all states start reporting the names of people infected with the human immunodeficiency virus. Though the ''recommendation'' would not be law, Congress would almost certainly tie any federal money for AIDS to whether a state complied with the CDC ''guidelines.'' So whether state health departments and local AIDS agencies agreed with the policy or not, they would be forced to follow it or face losing already inadequate money.

Currently, only AIDS cases are required to be reported. On average, it takes about 10 years from the time a person is infected with HIV to reach the medical conditions that define AIDS.

A policy shift

Reporting the names of people with HIV would be a dramatic shift in policy for states hardest hit by the epidemic and it has the potential of setting the epidemic back to a time when fear kept the most needy people from getting tested and knowing their HIV status.

Now, more than ever, there are strong arguments for anyone FTC who might be at risk for contracting HIV to get tested and seek medical help. Finally, new drugs appear to be offering many people with HIV a glimmer of hope in fighting the disease, especially if the new drugs are taken soon after infection occurs. For the government to do anything that might create an atmosphere of fear or doubt, and thus discourage people from getting tested, would be a grave error.

In a recent issue of the New England Journal of Medicine, as well as the CDC's Morbidity and Mortality Weekly, CDC officials argue that a national system of HIV-names reporting from all states would arm health officials with up-to-date data about new trends in the course of the epidemic. They point out that the current data, based on AIDS reporting, give a 10-year-old snapshot of the disease. HIV reporting would allow better targeting of education and prevention efforts, and would result in saving lives, the reports maintain. It would also allow better allocation of scarce funds and resources to where they are most needed.

Useful statistics

No one argues that HIV reporting would yield useful statistical information about the disease and how it changes. It is questionable, however, whether the information garnered from such a policy would be worth the potential consequences of having a government list of people with HIV.

Virginia McComb, assistant director of the Philadelphia AIDS Task Force, the largest anonymous testing agency in the city, fears the policy could actually result in people refraining from getting tested, and thus from getting care.

''If we had to report HIV cases, it would be a step back, not a step forward,'' she cautioned. ''In spite of the years of education and outreach, if this happens, people are going to be afraid to get tested because of the history of discrimination this disease carries.''

While the CDC argues that HIV-names reporting would give a more accurate picture of the disease, Marj Plumb, director of public policy for the San Francisco-based Gay and Lesbian Medical Association, says research projects that anonymously sample HIV rates in different populations can provide much of the scientifically useful information that reporting would achieve. Ms. Plumb questions whether an accurate picture of America's state of HIV can be culled from a national surveillance program.

HIV tracking will give a better handle on the state of the disease, she agrees, but the information it yields would be only about people willing to be tested.

Today, with more drugs and more hope than ever in treating HIV and AIDS, everyone should be encouraged to seek early testing and early treatment. We must not allow the bureaucratic need to bean count keep people from getting information vital to living longer, healthier lives.

Mubarak S. Dahir wrote this for the Philadelphia Daily News.

Pub Date: 12/09/97

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