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Last Updated

05 Jul 2006


Source: Wall Street Journal, July 5, 2006.

Plans to Expand AIDS Testing Alarm Activists


Federal officials are readying new guidelines that propose routine HIV tests for people 13 to 64 years old. But fears that the change could short-circuit patients' rights are prompting protests and even legislation.

The proposed policy changes are part of a sweeping effort by the U.S. Centers for Disease Control and Prevention to streamline HIV testing. While lacking the force of law, the new guidelines would urge doctors to offer the test to everyone with basic health care, regardless of their risk factors.

The test would remain voluntary. But pretest counseling would be trimmed, or even eliminated, and consent could be obtained orally instead of in writing, as many states now require. The CDC says broader testing is needed because about 25% of the estimated one million Americans with HIV are unaware they are carrying it.

But concerns are mounting from city councils to Congress that the HIV tests would impinge on individual rights and attach a damaging stigma to thousands of patients while failing to ensure that they will receive treatment. Civil-liberties activists and a range of politicians are arguing that expanding testing without also maintaining counseling and expanding access to care will leave patients worse off.

Many AIDS advocates support broader testing, but only with full counseling and documented consent. "Do we support broader testing? Of course we do," says ACLU attorney Tamara Lange in San Francisco. "What we disagree with is the push to obtain testing by deceiving people about what will happen if they get tested." She adds, "We live in a world where we [still] get many complaints of HIV-related discrimination in housing, employment and health care."

As the CDC lays out its plans, the debate over updating HIV testing policy went global this week as the World Health Organization and UNAIDS began consultations in Geneva on how best to scale up testing to increase access to prevention and care around the world. "Testing has to become more normal," says the WHO's new AIDS Director Kevin de Cock. While opposed to forced testing, he adds, "Testing strategies have got to change. The status quo is unacceptable. It is a barrier to treatment."

Indeed, generally, only patients who are identified as carrying the HIV virus can be treated for it. And by uncoupling widespread testing from questions about sexual behavior, the stigma associated with HIV will subside, argues Tim Mastro, a top HIV prevention official at the CDC.

But what happens if patients are identified as HIV-positive and then can't or don't get treatment? "CDC's recommendations make sense in a world that can provide accessible health care without stigma," Marla Gold, dean of the School of Public Health at Drexel University in Philadelphia, says in an email. "Regretfully, we are not living in that world."

Opponents worry that busy clinics and harried doctors could take shortcuts, or fail to explain the virus, misleading or coercing vulnerable patients. They also note that many state AIDS Drug Assistance Programs have waiting lists, risking that more people will test positive only to be denied access to drugs.

HIV is "the only reportable disease that isn't explicitly tied to care," says Jeff Sheehy, HIV/AIDS adviser to San Francisco Mayor Gavin Newsome. "With TB, they report you and treat you. They don't say, 'Oh well, you don't have insurance. Bye.' "

San Francisco's outspoken chief of sexually transmitted disease control, Jeffrey Klausner, expressed early support for the CDC's proposed AIDS tests. Change is urgent because some people only learn they have HIV after falling ill with full-blown AIDS, says Dr. Klausner, who is famed for his campaign against Viagra use in bathhouses. But City Supervisor Fiona Ma, a lawmaker who shares Mr. Sheehy's concern, pushed through emergency legislation urging the city to keep written informed consent for HIV tests, in accordance with state law.

In New York City, Health Commissioner Thomas Frieden's advocacy of routine testing and briefer consent procedures made him a lightning rod for criticism by the American Civil Liberties Union and allied AIDS and gay-rights groups. On its Web site, the ACLU has posted a lengthy rebuttal of Dr. Frieden's stands on routine testing, shorter counseling and oral consent, along with aggressive outreach to find and collect data on patients.

And on Capitol Hill, Republican Sen. Tom Coburn of Oklahoma -- long a fan of broader testing -- wants to incorporate routine-testing language into the pending reauthorization of the Ryan White CARE Act, which provides major funding for AIDS treatment and care for the poor. But aides working with Democratic Sen. Edward Kennedy of Massachusetts vow to prevent the measure from overriding state laws requiring written informed consent for HIV testing, or from making routine tests mandatory to get federal funding.

The push for routine testing comes on the heels of new laws requiring HIV positive people to be reported by name. This shift to name-based reports by states -- now required if the state is to receive federal AIDS funding -- fuels fears that routine tests will be a tool for government surveillance, or that it will increase incidents of discrimination if data aren't kept highly confidential.

Lambda Legal Defense and Education Fund, a nonprofit civil-rights group in New York City, filed suit in federal court in Nevada this past February seeking back pay and damages for a man fired by a sandwich shop after he disclosed his HIV infection. With such stakes, says Lambda lawyer Jennifer Sinton, "It's crucial that we have pretest counseling and informed consent."

In Brooklyn, a physician working with homeless teenage boys at risk for AIDS, says even 20 minutes of pretest counseling -- which the CDC seeks to trim or eliminate -- may not even be enough to engender trust. "You have to make them comfortable [or] when you give them the result that they're positive, you'll never see them again," says the physician, Jeffrey Birnbaum.

Compromise seekers are looking hard to find middle ground. In Sacramento, California state Assemblyman Mark Leno introduced a bill allowing clinics flexibility to shorten pretest counseling for gay men and others who seek regular HIV checks and know the drill.

And on Capitol Hill, staffers close to Sen. Kennedy, while vowing to resist any push to require routine tests as a basic funding mandate, say they are open to a compromise policy that would offer special incentive funding for states that adopt the CDC's streamlined HIV testing guidelines.

Any move to shorter counseling and oral consent would require a change of state laws like the New York statute that requires written informed consent for all HIV tests, and the California law that requires written consent for HIV in testing centers unless delivered as part of a physician's medical care. Adapting different state laws will take time. Until then, the ACLU is working with state legislatures to ensure adequate consent remains in place, says Rose Saxe, a staff attorney working on AIDS for the ACLU's national office in New York.

When asked for a CDC response to concerns of civil-liberties and AIDS advocates, a CDC spokeswoman says that the center is proceeding with the formal process of revising the draft guidelines for publication in August or September, adding it was "premature" for the agency to comment publicly.

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