Names Reporting...


Gay Men's Health Crisis Press Release:

Calls for Monitoring of HIV Infections Demands New York State Develop System That Collects and Uses Data to Expand Treatment and Prevent New Infections, While Protecting Privacy

PR Newswire; Tuesday January 13, 11:58 am EST

NEW YORK, Jan. 13 /PRNewswire/ -- Gay Men's Health Crisis called today for a new system for tracking HIV infection in New York State. Until now, GMHC had opposed plans to report HIV infections. But with changes in the epidemic, the agency now believes that the old hospital-based AIDS reporting system is obsolete. A new monitoring system is critical to help prevent new infections, especially among young people, as well as to expand health care for those already infected with HIV. The numbers of AIDS cases and deaths have been available for years, but the huge number of those infected with HIV -- and of new infections each year -- remains a mystery.

"Shifts in HIV infections and new early treatment options demand new approaches," said Ronald S. Johnson, GMHC's Managing Director for Public Policy, Communications and Community Relations. "Counting only those who are hospitalized reveals yesterday's epidemic, not today's. We are committed to fighting for a new system of tracking HIV infections with strong privacy protections that will help those most at risk: the poor, women, youth, especially gay youth, and young adults."

New York's current monitoring system, designed in 1983, tracks the epidemic by counting people who become hospitalized with, or die from, AIDS-related illnesses. The system misses the shift of HIV care from hospitals to outpatient clinics and doctors' offices, it also misses the large numbers of people who have learned they are HIV positive but have remained healthy.

GMHC is calling for a monitoring system with strong and enforceable privacy protections to prevent discrimination against people who are HIV positive. Personal information gathered by the state public health department needs to be protected as stringently as the current AIDS monitoring system has guarded privacy for nearly two decades. Public health data in New York State are among the most highly protected form of medical information. GMHC believes that the real threat to privacy is the unregulated free market for private medical records among insurers, drug companies, industry and employers.

GMHC also favors the preservation of free, publicly funded anonymous testing. Anonymous testing is an important vehicle for some people to receive counseling and testing, enter medical care, and prevent further transmission. Anonymous testing is an important adjunct to any HIV monitoring system, because lack of this option leads some people to delay testing, donate blood as a means to be tested anonymously, and give false information at confidential testing sites.

"Our call for a new monitoring system should not become a vehicle for enacting punitive, ineffective or unrelated HIV policies," said Mr. Johnson. "Some propose linking a new monitoring system to the issue of partner notification. We are opposed to mandatory, government-run partner notification. We are convinced that counseling about voluntary disclosure and protecting sexual partners must continue to be performed by doctors, nurses, social workers and community-based organizations. The real challenge for New York State public health officials and elected leaders is to use the data collected from a new HIV monitoring system to increase care for the infected and to prevent new infections from occurring." Gay Men's Health Crisis, the nation's oldest and largest AIDS organization, provides direct services to thousands of men, women and children with HIV and AIDS, and reaches tens of thousands more through its education and advocacy programs.

SOURCE: Gay Men's Health Crisis

The New York Times (January 13, 1998) _

AIDS Agency, in Policy Reversal, to Call for Reporting HIV Cases to State

by Lynda Richardson

NEW YORK -- The Gay Men's Health Crisis, the nation's leading AIDS service agency, is reversing its position and calling for New York doctors to report HIV-positive people to state health departments. The same practice is used for infectious diseases like syphilis and tuberculosis.

Every state requires doctors to report AIDS cases to public health officials. But officials in New York and California and many other states have not required similar reports about patients who have the AIDS virus but do not have full-blown AIDS. Influential groups of advocates for people with AIDS, including the Gay Men's Health Crisis, have resisted those efforts, arguing that required reports would deter people worried about lapses in confidentiality from being tested and treated early.

But in a policy statement to be released Wednesday, the group said clinical advances and the need for the most up-to-date information on HIV infection demanded new approaches, and that system of tracking people with AIDS is no longer an effective measure of the extent of the epidemic. While the group said that assuring strong privacy safeguards is as important as ever, it said that the large numbers of people who are infected but who do not have full-blown AIDS make accurate tracking of HIV cases essential.

The statement, an advance copy of which was obtained by The New York Times, does not explicitly oppose reporting names, but instead urges that coded identification systems be examined.

"This is not a static epidemic and our position cannot be a static position," Ronald Johnson, a managing director of the organization, said in an interview. "It certainly is a change. We look at it more as a progression in our thinking." The official statement by the organization, the most politically and economically connected group in the world of nonprofit AIDS service, signifies the collapse of a long-standing consensus by AIDS and civil rights groups against HIV reporting.

The group, which is based in New York and has an annual budget of roughly $27 million, has been a formidable lobbying force in Washington and Albany, particularly in matters like quicker access to new drugs, increased government financing for AIDS services, and resisting policies viewed as a threat to the civil liberties of its constituency. Its board of directors, contributors and volunteers include a cross section of New York's business, social and professional elite.

A move to HIV reporting in New York would most likely require new state law. No action in Albany is expected until the New York State Advisory Council, which advises the governor and the Legislature on AIDS policy, makes its recommendations on HIV reporting, expected by March.

Whatever New York decides will be significant. Others states tend to look to New York in formulating their own AIDS policy, and a change in Albany could well lead to policy changes in other states.

Twenty-eight states, including New Jersey, now have HIV reporting for both adults and adolescents. Those states, however, account for about 24 percent of all AIDS cases reported. New York, which does not require HIV reporting, has the highest rate of reported AIDS cases, 69 per 100,000 people. The comparable number for New Jersey is 47, for Connecticut 37 and for California 26.

HIV reporting in New York State would greatly expand -- by thousands -- the number of infected people listed in government registries, arousing concern about invasion of privacy and discrimination. As many as 150,000 people statewide are believed to be HIV positive, of whom about 80 percent are New York City residents, according to the state Health Department.

A move to HIV reporting would provide a more accurate picture of the epidemic and could lead to earlier treatment. But some advocates for AIDS patients suggest that the policy could open the door to more intrusive and coercive measures, such as tracking down the sexual and needle-sharing partners of infected people. GMHC's position paper said the agency opposes linking HIV reporting to such activities.

In recent months, many advocacy groups have softened their position on HIV reporting because powerful new drugs have delayed many patients' progression to AIDS-related illnesses and death. Most organizations, however, have remained publicly opposed to reporting the names of HIV-positive people to health departments, favoring instead the use of coded identification.

The Gay Men's Health Crisis statement is not explicit in opposing HIV name reporting. The statement says a system of coded identification should be used to monitor HIV infections in New York State, and cited the "unique identifier" systems used in Maryland and Texas as models.

Late last week, the federal Centers for Disease Control and Prevention in Atlanta announced that a three-year evaluation of the Maryland and Texas systems found that tracking HIV by codes did not reliably count the cases. The evaluation of the two states concluded that the codes were often incomplete, making it difficult to link them to real people.

Johnson, of the Health Crisis, said more resources need to be spent to develop a viable coded identification system. "The Maryland and Texas approaches showed flaws, but they don't necessarily demonstrate that the unique identifier system is impossible," he said.

His organization's new position has dismayed some advocates for AIDS patients, who had hoped that it would make opposition to the use of names the bedrock of its policy statement.

"It's disappointing," said Jeffrey Reynolds, a member of the state AIDS Advisory Council and the policy director at the Long Island Association for AIDS Care, a service organization based in Huntington. "There's so much at stake here. This is the most critical issue that the AIDS community has faced in a decade. And they've taken a middle-of-the-road position. They should have come out with guns blaring and they didn't."

Few groups now oppose HIV reporting in general. The American Civil Liberties Union and the Lambda Legal Defense and Education Fund do not oppose the approach as long as coded identification is used. That position is also shared by AIDS Action, a national group for 2,500 community providers of AIDS service, AIDS Project Los Angeles and the San Francisco AIDS Foundation.

The New York State AIDS Advisory Council has a special work group on HIV reporting, of which Reynolds is a co-chairman. The work group has reached a consensus that HIV reporting is necessary. But after its meeting Monday, Reynolds said that the question of choosing name or coded identification was still a contentious one. The work group will submit recommendations that will go to a vote before the full advisory council in several weeks.

Even so, the outcome in New York State is inevitable, according to some AIDS policy experts. "It will move to a system of HIV reporting and ultimately it will go to name reporting," said Lawrence Gostin, a director of the Georgetown University-Johns Hopkins University Program on Law and Public Health and a member of the Centers for Disease Control's advisory committee. "New York is the most important state in the country in terms of the AIDS epidemic. It's a matter of time."

Mark Barnes, a health care lawyer in New York City and a former director of AIDS programs in the city health department, said many advocates believed that a coded identification system was not workable but that they felt they must satisfy their constituencies. Barnes said the state was likely to move to name-based HIV reporting gradually, perhaps after experimenting with a coded identification system. "This train has left the station," he said.


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see: Activists' Responses


see also:

Myths and Facts about HIV Names Reporting

Congressional Legislation (The Coburn Bill)

NAMES News Media Clips