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Reporting debate shifts to names issue




 

THIS WEEK, the California Medical Association is drafting a reporting law that would dramatically shift the way state officials track and report HIV disease.

In addition, the U.S. Centers for Disease Control and Prevention is expected to release within the next several months HIV reporting recommendations to states. Those recommendations, if adopted, could tie compliance to federal funding, according to the Los Angeles Times.

Bills also are pending in Congress to make HIV surveillance mandatory. New York, Illinois, Pennsylvania, Georgia and Massachusetts - all states heavily affected by HIV - have reporting legislation pending or in the process of being implemented.

The goal is to identify those in the earlier stages of HIV infection, not just those exhibiting full-blown symptoms of AIDS.

About 30 states keep track of cases of human immunodeficiency virus infection, even if it has not progressed to AIDS. But some of the areas most heavily affected by the epidemic, including California, have clung to a policy of tracking AIDS cases only - a practice largely in response to AIDS advocacy groups that urged a balance between disease control measures and a person's privacy.

In recent months, however, major advocacy organizations have come to a remarkable consensus with public health officials that AIDS-only surveillance puts states at risk of losing track of the changing epidemic. "This lack of information is endangering lives and undermining our efforts to fight the epidemic," said the Gay Men's Health Crisis of New York, the nation's largest AIDS organization, in a position paper last month.

The debate rather quickly shifted from whether HIV should be tracked to how it should be tracked - by name or by codes to protect people's identities? On this point, medical traditionalists and AIDS advocacy groups clash mightily.

With more patients staying healthy longer, many advocates and disease detectives agree AIDS cases are no longer a good tip by which to measure the HIV iceberg. Nor can research and prevention dollars be appropriately allocated based on AIDS cases alone.

Nationwide counting of HIV cases could reveal some surprises, even reconfigure the official map of the epidemic. One Mississippi health officer predicted it would alert officials to growing rural pockets of HIV and perhaps draw more federal dollars to his state.

The nation has recorded 612,000 AIDS cases since 1981 - a third of them in California and New York. The HIV-infected population is estimated at anywhere from 650,000 to 900,000, according to CDC estimates.

The greatest wrangling now, however, is over whether the government - local, regional or state health departments - ought to track HIV cases by name or by codes.

The California Medical Association, the American Medical Association and various public health groups support name-based reporting, often insisting on strong confidentiality protections.

The California Medical Association also insists that anonymous testing sites be maintained. These are places where people who do not want to be identified by name can find out their HIV status. Under this complex system, such patients would only be reported by name when they sought medical treatment for HIV. Legislation backed by the state group is expected to be introduced this year.

The San Francisco AIDS Foundation endorses HIV surveillance only if it is done through a "unique identifier" system that would identify and track patients by codes. It opposes name-based reporting.

But the CDC - which dispenses federal funding for AIDS tracking - has indicated it will favor name-based systems. One key study published in the agency's Morbidity and Mortality Weekly Report in January was highly critical of experimental identifier systems in Texas and Maryland, concluding the records were too often incomplete.

Events

* "CMV Disease in the Era of Antiretroviral Therapy" will be discussed today at 6 p.m. by Drs. Lawrence Drew and Jay Lalezari of the Community Consortium at the Mission Center Building, Room 126, 1855 Folsom St. at 15th., in San Francisco.

*The AIDS Emergency Fund is holding an open town meeting on Thursday at 7 p.m., 131 Gough St., for people to voice their opinions, ideas and concerns to the group's Board of Directors. Call (415) 558-6999.

*Thinking about returning to work? Learn about the legal, financial, social and emotional issues at a workshop by AIDS Health Project and AIDS Benefit Counselors on Saturday. Call (415) 476-6448.

*The Ansel Adams Center for Photography will be visited by the HIV Positive Social Program of the AIDS Health Project on March 24 at 2 p.m. Free. Call (415) 476-6448.

*Three prominent AIDS-treating physicians will conduct a national dialogue, via a free national telephone conference call, called "Choosing the Right HIV Treatment Strategy," on March 25 at noon. Anyone who wants to participate in the call, organized by the San Francisco AIDS Foundation, can reserve a place by calling 800-707-BETA.

*The Tenth National AIDS Update Conference will be held in San Francisco's Civic Auditorium March 24-27. Scholarships are available for people with HIV / AIDS. Call (415) 255-1295.

* "Positive Choices: A treatment workshop for women living with HIV," sponsored by Community Prescription Service, will be held March 28 from 10 a.m. to 3 p.m. at the Oakland YWCA, Julia Morgan Tea Room, 1515 Webster St. in Oakland. Free. Lunch and child care provided. Call 800-842-0502.

* "Mansex 101," a series of 15 discussion groups held this spring, tackles such topics as love, sex, power, dating and disease. For more information, call STOP AIDS at (415) 621-7177, ext. 235.

The toll

Billy Ray Blasinger, 55, a graduate of East Texas State University, vice president at Bank of America, and a competitive tennis player . . . Kevin G. Toney, 45, a long-term survivor of HIV who was a native of Tonawanda, N.Y., a computer programmer and employee of VISA.

. . . . . .Date . . . . . .reported. . Cases. . Deaths S.F.. . . .3/1 . . . . 25,148. .17,049 Calif.. . .3/1 . . . .105,121 . 66,450 U.S.. . . .3/1 . . . .612,078 .379,258 WHO(rprtd) 3/1 . . .8,400,000 6,400,000

Figures are cumulative since June 1981. Government officials now compile and release statistics quarterly, not monthly. To contribute to AIDSweek, call (415) 777-7867. AIDSweek columns are available on the Internet at http://www.examiner.com/aidsweek/aidsweek.html



 


Copyright © 1998 -The Bangkok Pos, Publisher. All rights reserved to San Francisco Examiner. All rights reserved. Reproduced with permission. Reproduction of this article (other than one copy for personal reference) must be cleared through the San Francisco Examiner, Permissions Desk, 110 Fifth Street, P.O. Box 7260, San Franciso, CA 94120.San Francisco Examiner

Information in this article was accurate in March 18, 1998. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.