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San Francisco Examiner
City urged to require doctors to report HIV; Coding IDs
Lisa M. Krieger, Examiner Medical Writer
January 26, 1998
A panel of San Francisco AIDS experts recommends that The City consider requiring doctors to report every HIV infection to the Health Department - a controversial plan that nonetheless may be the only way to reliably track the epidemic.

The approach will be proposed at Tuesday's AIDS summit convened by Mayor Brown in response to the changing patterns of the disease. It is one of dozens of recommendations, summarized in a 175-page report, to improve The City's system of AIDS care.

U.S. doctors have been required to report AIDS cases to public health officials, but there has been no similar order to report patients who carry the AIDS virus but do not have full-blown AIDS. The policy of San Francisco has been that there should no reports of HIV tests without the explicit consent of the patient.

But this has made it tough to track where the virus is spreading, what risk factors lead to infections, and where to target treatment and prevention. Because of improved treatments, fewer and fewer HIV-infected people actually progress to AIDS, so they remain unreported.

The panel explicitly rejected reporting names, instead proposing a system that uses cryptic codes, based on unique "identifiers" - numbers or letters corresponding to an individual. This would protect privacy and minimize fear of AIDS-based discrimination, the panel said.

It recommended that a task force be convened to research the cost and technical components of the system. Voluntary testing

The panel also insisted that all HIV testing be voluntary, not required. To better detect changing trends in the epidemic, The City should seek a way to offer free or low-cost AIDS tests, according to the report.

"San Francisco needs to explore ways to improve our existing AIDS / HIV surveillance efforts," according to the report. "AIDS case data is no longer indicative of either the number or the demographics of the HIV-infected populations. . . .

"Changes in the epidemic have led many people to express increasing concern that existing AIDS surveillance efforts are becoming outdated. Because new treatments are slowing progression of disease, these people are not being reported systematically to public health agencies," it states.

The day-long summit, open to the public by invitation, also will address treatment, employment, prevention, housing and funding. More than 100 experts, led by Drs. Marcus Conant and Thomas Coates of UC-San Francisco, formed subcommittees to study the issues and make formal recommendations to the mayor.

Brown has vowed to implement the recommendations through his newly created Mayor's AIDS Leadership Forum and the appointment of a senior-level staff person in his office.

The recommendations in the report "will enable us to refine our system of care and continue to provide the level of service to which we are all committed," Brown wrote in a preface to the report. The report concludes that AIDS incidence is decreasing in The City - but the number of people living with AIDS is increasing, due to improved therapies. The City will need more, not fewer, AIDS services, concludes Dr. Mitch Katz, interim director of the Department of Health.

Gay men predominate

Although a growing proportion of cases are injection drug users, almost nine out of every 10 new cases are still in gay men, or in gay men who use injection drugs. Prevention works - but drug users, women, young men and people of color are missing the message, according to Katz.

The report urged The City to better integrate HIV prevention services with other social services, such as drug treatment. Drug and alcohol treatment should be available to everyone who needs it, the report states.

"Sex clubs have provided an opportunity for HIV prevention," the report also concludes. Rather than shutting them down, city officials should encourage them to promote safe sex. Likewise, all high schools should have enough money to offer free condoms, it contends.

It also recommends The City guarantee HIV-infected people access to tests that measure levels of the virus and CD4 cells and to any other future diagnostic tests recommended by federal treatment guidelines.

To help homeless people stick to their treatments, the experts recommend creating two "Action Point Centers" - telephone and drop-in centers that would offer counseling and tools like timers or pill containers.

Because doctors who specialize in HIV care are known to boost patients' survival, the report recommends that all health plans doing business in The City include AIDS experts.

Of the report's many recommendations, its proposed change in HIV reporting is likely to be the most volatile. This approach is favored by the mayoral advisors because it is a compromise between the existing system of AIDS-only reporting and full, mandatory, name-linked HIV reporting.

Nationally, a growing movement is pushing for making HIV-positive a reportable condition. The federal Centers for Disease Control, responsible for tracking the epidemic, has long advocated a change.

Changed views

Several AIDS and civil rights groups have dropped their resistance to HIV reporting, including the San Francisco AIDS Foundation; the Gay Men's Health Crisis, the nation's largest service provider; AIDS Action, a national group representing 2,500 community providers of AIDS services; the American Civil Liberties Union and the Lambda Legal Defense and Education Fund. All favor reporting only if coded identification is used.

Other infections, such as syphilis and tuberculosis, long have been reportable illnesses. But because of the stigma associated with HIV, AIDS advocates had opposed a similar tracking system.

HIV is reportable by name in 27 states. Two other states, Maryland and Texas, report HIV through codes.

Although AIDS advocates favor code numbers to protect privacy, some health authorities contend that the epidemic is better tracked if names are used because they are less subject to confusion and easier for doctors to report. The two states that use codes have been missing cases, according to the Centers for Disease Control, which urges improving coding techniques.



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