Guidelines Urge States To Collect HIV Cases With Names

December 10, 1999

ATLANTA (AP) - The government issued new guidelines Thursday instructing states to collect data on HIV cases with patient names or identifying codes attached - a measure that has alarmed some AIDS activists.

The guidelines are the latest step in an effort by the Centers for Disease Control and Prevention to track where and how the AIDS virus is spreading.

The CDC estimates that up to 900,000 Americans are living with HIV, and about 297,000 of them actually have AIDS.

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 released Thursday (Dec. 9) 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, first proposed a year ago, 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."

Thirty-four states 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.

ADDENDUM Jan. 8, 2000. Several e-network members commented on the impact, if any, if such a guideline were implemented. Comments received were as follows:

Comment #1: I don't believe the impact would be great. It would, of course, depend a little upon the publicity generated and the tone of the publicity. Since donors are already told that their names would go on a deferred donor registry (DDR) they might not be alarmed to see a different kind of registry kept. The vast majority of donors do not think they are at risk of being HIV positive and if the legislation kept away those who might even be at minimal risk, it would not be such a bad thing.

Comment #2: Giving names would have a disastrous effect; assurances by the feds won't satisfy. It might work if only random numbers were assigned.

Comment #3: I think the guideline is in line with good public health practice. Legislation to this effect had been proposed in California over at least the last two legislative sessions, but it had not
progressed. Concern with maintaining confidentiality has been a hurdle and would need to be worked out prior to instituting any system. As far as its effect on blood donations, I do not think it would have a major impact on the number of donations. It potentially could reduce the number of individuals who are test-seeking, but we discourage test-seeking individuals from donating anyway.

Copyright 1999 The Associated Press. All rights reserved.