Washington Blade - December 2, 2005
Lou Chibbaro, Jr.

Agreeing with activists that an HIV diagnosis could lead to discrimination and hostility, health departments in most of the states shunned names reporting procedures and embraced the concept of anonymous HIV testing programs.

Now, more than 20 years later, the trend is going in the opposite direction. Thirty-nine states have adopted systems of confidential HIV names reporting similar to the names reporting procedures that have been in place for nearly a century for other sexually transmitted diseases.

New York and Illinois were the latest states to adopt a names reporting system, with the Illinois system set to take effect in January. Georgia adopted a names reporting system in December 2003. Officials there said the new system did not lead to a decrease in the number of people being tested.

To the surprise of some activists, AIDS organizations that for years have objected to names reporting have quietly accepted the changes.

"I have to honestly say the sky has not fallen," said Ronald Johnson, executive director of the New York City-based Gay Men's Health Crisis, which became the nation's first AIDS advocacy group in the early 1980s.

Johnson said GMHC did not support a names reporting system when the New York State Legislature adopted the system with the support of Republican Governor George Pataki. But he said his group was pleasantly surprised when it became clear that names reporting procedures did not lead to a decrease in the number of people getting tested for HIV at GMHC's facilities or at other testing sites in New York.

Phill Wilson, executive director of the Black AIDS Institute, which monitors trends in HIV and AIDS among African American gay men throughout the country, said his group has observed a similar trend.

"The real question has been, if you move to names reporting, will people not get tested?" Wilson said. "What we have found is that has not happened. People have not been deterred from getting tested because of names reporting."

When the AIDS epidemic burst on the scene in the early1980s, the U.S. Centers for Disease Control and Prevention persuaded the states to report the names of those diagnosed with full-blown AIDS to state health departments, which in turn, submitted information about cases to the CDC.

The decision to adopt names reporting for full blown AIDS did not trigger widespread objections in the early years of the epidemic because those being diagnosed were already severely ill, and most died soon after their diagnosis.

The confidentiality issue surfaced several years later, when researchers discovered the virus that caused AIDS and developed a test for the human immunodeficiency virus, or HIV, for both the sick and for individuals who had not yet developed symptoms.

With gay men discovered to be among the groups at high risk for AIDS, gay and AIDS activists led efforts to keep information surrounding HIV testing confidential and in many instances anonymous. Activists strongly opposed a names reporting system for HIV.

1990s brought new challenges

In the 1990s, the development of new and effective drugs that have largely halted the onset of full-blown AIDS created a new set of problems for tracking the disease, CDC officials have said. Counting only AIDS cases was no longer useful for tracking the course of the epidemic, experts said, because the epidemic consisted mostly of people with HIV.

When the CDC called for improved data on the number of HIV cases, in addition to the number of AIDS diagnoses, state health officials developed a system of encoding the names of persons who tested positive. That system became known as a "unique identifier system" because it incorporated into the coding process some personal aspect of the person being tested, such as a partial date of birth.

Currently, six states including Maryland, as well as the District of Columbia have unique identifier systems for HIV reporting. Virginia has a names reporting system.

Five states have a hybrid system that includes both a coded system and a names-based system. In those states, HIV cases are initially reported by name and are later converted to a code after public health officials gather demographic information from the individuals that tested positive.

The CDC, while not officially opposing the unique identifier system, has said it fails to meet its certification standards for HIV case reporting because it is less accurate than the names based system in tracking the reach of the epidemic. According to CDC officials, the unique identifier system often leads to duplication in counting cases for people that move from state to state.

In recent years, state health officials have also said the unique identifier system is far more costly and time consuming to administer than the names reporting system. 'People have not been deterred from getting tested because of names reporting,' said Phill Wilson, executive director of the Black AIDS Institute.

Earlier this year, the CDC upgraded its support for a names reporting system by changing its earlier position of "advising" states to adopt it to "recommending" that they adopt the names system, according to CDC spokesperson Jessica Frickery.

The CDC's stronger backing for names reporting came at a time when Congress is poised to change the formula for doling out federal AIDS funds in a way that could cut off millions of dollars in funds for unique identifier states and the District of Columbia.

Under the current system, federal AIDS funds - including funds from the Ryan White CARE Act - are based on the number of reported AIDS cases. The new system, expected to go into effect in 2007, will base the allocation of funds on the number of reported HIV cases.

Theoretically, if the CDC doesn't recognize HIV cases reported under the unique identifier system, states using that system would be counted as having only full blown AIDS cases, which they now report through a names system. Under the new Ryan White funding formula, they would have far fewer cases than states that use a names reporting system for HIV cases and would likely receive millions of dollars less in federal funds.

D.C. would be among the jurisdictions considered to have only AIDS cases, even though D.C. has the nation's highest rate of HIV infections.

The Department of Health and Human Services, which operates the Ryan White program, has yet to disclose details on whether unique identifier states will lose all or some funding under Ryan White. But AIDS activists and state health departments have begun to respond as if the new policy will result in the loss of millions of dollars in federal AIDS funds if they continue with the unique identifier system.

Michael Montgomery, the openly gay chief of California's Office of AIDS, has called on state officials to consider changing from a unique identifier system to a names reporting system.

"HIV and AIDS were such a heavily stigmatized disease for populations that are not power groups in our society," the Associated Press quoted Montgomery as saying in July. "But we now have laws in place to protect people from those forms of discrimination," AP quoted him as saying.

'I have seen the light'

The National State & Territorial AIDS Directors, for which Montgomery serves as an officer, has recently announced it, too, is considering support for HIV names reporting as long as strict confidentiality can be assured.

AIDS organizations in other states, including California and Illinois, that once opposed names reporting, have also jumped on the names reporting bandwagon, saying that system provides more accurate data on the status of the nation's AIDS epidemic.

"I have been a longtime opponent of names reporting," said veteran D.C. AIDS activist Carl Schmid, director of federal affairs for the AIDS Institute, a national group. "Now I have seen the light. I feel as long as confidentiality is assured, names reporting is acceptable and even preferable."

In D.C., the Gay & Lesbian Activists Alliance has expressed strong opposition to a names reporting system, saying the unique identifier system adopted by Mayor Anthony Williams was needed to insure that people would continue to come forward to get tested for HIV.

GLAA spokesperson Rick Rosendall said the small group of vocal, longtime activists remains opposed to a names reporting system.

Gay D.C. Councilmember David Catania (I-At-Large) has also expressed opposition to a names reporting system for the District, on the grounds that the D.C. HIV/AIDS Administration was incapable of administering a names systems due to understaffing in its epidemiology unit.

Marsha Martin, the newly hired director of HAA, said Catania has told her he would consider supporting changes to a city law that now requires D.C. to use the unique identifier system if he sees improvement in HAA's HIV surveillance and epidemiology procedures and staffing.

Martin said she has taken steps since taking office two months ago to rebuild HAA's HIV surveillance unit through a possible relationship with George Washington University's School of Public Health.

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