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California and the West

Use of Names Won't Lessen HIV Testing, Study Says

Health: Federal findings clash with claims by AIDS activists that tracking cases by one's identity will deter prevention. Research could fuel California debate.


A federal study suggests that tracking HIV cases by name does not affect people's willingness to be tested for the disease--a finding that clashes with the contentions of major AIDS advocacy organizations that collecting names will drive the epidemic underground.

The six-state study by the U.S. Centers for Disease Control and Prevention is certain to fuel the fiery debate over how best to track the human immunodeficiency virus in California, where Gov. Pete Wilson recently vetoed a compromise bill that would have required tracking by alphanumeric code.

The compromise, forged by the California Medical Assn. and AIDS advocacy groups, emerged after activists insisted that names-based surveillance would raise privacy concerns and deter people from testing and treatment.

Wilson, in his veto message, called such worries "irrational." The surveillance issue--driven by broad concerns that the state is losing track of HIV's silent spread--is expected to be taken up again in the Legislature next year.

From their study, published today in the Journal of the American Medical Assn., the federal researchers concluded that the impact of confidential names-based surveillance on those seeking testing "will be small and should not hinder HIV prevention efforts."

"I'd hate to speculate what would happen in every state, but I would guess that in most states [names reporting] is not going to be a problem," said Dr. Allyn K. Nakashima, lead author of the study. "Reporting itself is not going to be the issue that keeps people from being tested."

The study was conducted at publicly funded sites in Louisiana, Michigan, Nebraska, Nevada, New Jersey and Tennessee. The states are among 28 in the country to track HIV by name. All states, including California, track full-blown AIDS cases by name.

The study--the first large-scale examination of testing behavior--found that the total number of HIV tests in four of the states actually rose in the year after the names-tracking system went into effect.

Two states--Louisiana and Michigan--showed declines of 11% and 2% respectively, but neither dip was considered statistically meaningful.

The study hardly puts the tracking issue to rest, especially in California.

Critics argue that it did not focus on states similar to California and New York, where privacy concerns remain greatest, particularly among gay men and illegal immigrants.

They found it worrisome that testing declined in certain subgroups, such as gay men in Tennessee and Louisiana and injection drug users in Louisiana, Michigan and New Jersey. They speculated that many people may not even have been informed of their state's names-reporting policy. And they stressed that names reporting may be only a prelude to other policies, such as mandatory partner notification, which might well scare people away from testing.

Critics, including the San Francisco AIDS Foundation and AIDS Project Los Angeles, also argued that the CDC study seems to contradict findings of another study published in the same journal. That study, led by researchers at San Francisco General Hospital and UC San Francisco, found that people who test anonymously seek testing and treatment significantly earlier than others who are tested confidentially.

The implication of that study is that privacy concerns do affect testing and treatment behavior. The study was a survey of 835 AIDS patients in seven states--Arizona, Colorado, Missouri, New Mexico, North Carolina, Oregon and Texas.

Dr. Andrew Bindman of UC San Francisco, lead researcher in the San Francisco study, said the main flaw in the CDC study is that many factors besides names-based reporting may have affected testing behavior.

CDC researchers and other experts argue that there is no contradiction between the two studies. They say both support the need for access to anonymous testing among some high-risk populations. Most states, including California, offer anonymous testing; 11 do not.

Dr. Ralph Frerichs, chief of UCLA's epidemiology department, said that both anonymous testing and confidential names reporting are warranted. The anonymous testing is for people who are not yet ready to "confront the full reality" of their infection and who simply want to learn their status quietly, without any risk of disclosure.

Confidential reporting, he said, comes later, when the individual's privacy concerns may have given way to a desire to enter the medical system for treatment.

"I think definitely the [CDC] article will have an impact in California," he said. "There are many concerns in California that people will fear the effects of disclosure. This should reassure some of these fears."

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