The New York Times

Friday, December 10, 1999

HIV Reports With Names Are Urged

By The Associated Press

ATLANTA (AP) -- New government guidelines for tracking the AIDS virus are getting mixed reviews from advocates, who say the old system was outdated but the new one raises privacy concerns.

The guidelines, published Thursday by the U.S. Centers for Disease Control and Prevention, asks states to report all HIV cases rather than just cases of full-blown AIDS. States are also asked to keep records of the names of people testing HIV-positive, or identify them by some other kind of identifying code.

By asking states to collect names -- something 34 states already do -- the CDC may scare some people away from getting an AIDS test, said Terry Stone, executive director of the Northwest AIDS Foundation in Seattle.

``Most of all there's just concern that there's going to be someone monitoring their lives,'' Stone said. ``'What if someone leaks my name out there, what happens then? Am I going to lose my job or my insurance?'''

The CDC estimates that up to 900,000 Americans are living with HIV, and about 297,000 of them actually have AIDS. The guidelines are intended to help track where and how the virus is spreading.

The CDC began recommending in 1997 that states tally HIV cases as well AIDS cases. States had been reporting AIDS cases by patient name since 1981. The new guidelines spell out how states should report HIV cases as well.

Testing sites would report HIV cases and patient names or identifying codes to state health departments, which would pass case data on to the CDC. Names and other identifying information would be kept at the state level.

States that don't comply with the guidelines risk losing federal funding for HIV surveillance -- ranging from $50,000 for Wyoming to $3 million for New York City.

The guidelines will mainly affect people who request an HIV test during visits to their regular doctor or when having lab work done that goes on their medical record.

Most states have clinics that offer anonymous HIV tests, and home-testing kits can be bought over-the-counter at many drug stores.

The collecting of names of people who test positive for HIV worries some AIDS activists.

Even though all but 11 states have anonymous testing, some AIDS activists are afraid that people won't get tested for fear their names will be reported to the state.

``I see any disincentive to undergo HIV testing as a problem,'' said Daniel Zingale, executive director of AIDS Action, a Washington-based advocacy group. ``Anything that's keeping people away from knowing their HIV status is a bad idea unless there's a compelling reason to do it.''

Dr. Ronald Valdiserri, deputy director of the CDC's center for HIV prevention, said that reporting names is the best way to ensure HIV data is accurate and that the names will be well-protected.

One option is for states to keep names in a database that requires two passwords -- one held by the state, the other by the CDC. And the CDC is urging states to pass laws making it a felony to release such names.

``The information tends to be more complete'' when names are used to track the data, Valdiserri said. ``There tends to be less frequent duplication.''

Besides the 34 states that already collect HIV cases with names attached, four other states use identifying codes and Washington state uses a combination of the two approaches. The remaining 11 states and the District of Columbia do not report HIV statistics.