Local health departments are looking to chip away at some of the many rules that, for better or worse, have protected the privacy of HIV patients until now. The process started last year when the state Board of Health approved a change allowing people diagnosed with HIV to be identified by name, rather than by a code of numbers and letters, in public-health records. Many in the AIDS-treatment community weren't happy about it, but the state faced a threat by the federal government to withhold AIDS funding if the change wasn't made—a potential loss of more than $16 million a year.
Now health officials want to push further of their own accord. They want to be allowed to contact HIV patients and ask about their sexual partners without first getting permission from the patients' doctors, as currently required by state law. They also want to keep those partner records for a period of time yet to be determined, rather than shred them after 90 days, as the state presently demands. And they want doctors to administer HIV tests routinely, regardless of whether the patient is especially at risk, and without the extensive consent and counseling process now required.
The proposals are being drawn up by a state-funded group of public health officers working on AIDS prevention, known as the AIDSNET Council, which will ultimately submit them to the state Board of Health for a decision. The group's plan, in part, is to bring the state in line with new recommendations by the Centers for Disease Control and Prevention that everyone between ages 13 and 64 should be tested for HIV. The CDC estimates that roughly 25 percent of infected Americans don't know they have the virus.
Bob Wood, director of the HIV/AIDS program for Public Health–Seattle & King County, argues that without the burden of pre-test counseling—including an uncomfortable and usually time-consuming discussion about the patient's possible risk behaviors—more doctors will administer the test. "All we're trying to do is find cases," Wood says. "If you force doctors to ask questions about risk, they're going to say, 'I'm not going to routinely offer HIV testing.'" Also off-putting, he says, is the mandated consent process. Doctors must document in their notes that a patient has specifically agreed to an HIV test, whereas public health officials would have a patient's general consent-to-care suffice. In essence, patients would be given a chance to opt out, rather than opt in.
The AIDSNET Council is moving beyond CDC recommendations in pushing for direct contact with patients—even if those patients are being treated by private physicians outside the public health agency. Health departments want to be allowed to ask patients about their sexual partners over the past year so they can then contact those people to alert them they might be infected (or encourage patients to contact partners themselves). The problem, says Wood, is private doctors aren't always cooperative. "Sometimes providers say, 'No, I don't want you to talk to a patient,' Or they don't call us back."
Holding on to partner-notification records, rather than shredding them after 90 days, would help health departments better track how, and among what kind of people, the disease is spreading, Wood says. The county is allowed to do this with other sexually transmitted diseases, such as syphilis, and Robert Marks, who supervises the county officials who do partner notification, says piecing together new and old records can help them contact someone they otherwise couldn't find. In December, he says, a patient who tested positive for syphilis identified one partner for whom he only had a first name and online chat ID. The health department e-mailed the person but got no response. In May, another person who tested positive for syphilis named the same partner, but this time had a phone number. The health department made contact.
Few outside the AIDSNET Council have heard about these proposed changes to state law so there's been no organized response. Jeffrey Schouten, a doctor at Harborview Medical Center's AIDS-focused Madison Clinic, likes the idea of universal testing. "Number one, it's less stigmatizing," he says, because people aren't singled out because of their behavior. But he says he doesn't want to see the principles of informed consent watered down. "Part of a meaningful informed-consent process does involve some pre-test counseling," including a discussion of the implications of a positive result, he says.
Allowing health departments to contact patients directly is sure to raise more questions. There's an inevitable tension between health officials and private doctors, says Peter Shalit, a doctor specializing in HIV and AIDS. "If you talk to people at the health department, they're actually cool, well-meaning people," he says. "But they have a different mind-set than me. My obligation is to my individual patient. Their obligation is to the community." Consequently, he says he is ambivalent about referring the health department to patients against their wishes (though he says he will certainly comply with the law).
Shalit also expresses skepticism about health departments' rationale for wanting to retain partner-notification records. "It does begin to appear to be a slippery slope," he says. "Sure, more data is better. They could have my whole medical chart and keep that."
"That would definitely concern us," says Doug Klunder, privacy project director at the American Civil Liberties Union of Washington, when told about the same proposal. "Those records are pretty sensitive records of intimate association." Ania Beszterda, policy and community advocate for Lifelong AIDS Alliance, likens such a practice to "keeping suspects on file" since the partners named have not themselves tested positive for HIV.
Schouten, who is an attorney as well as a doctor, brings up an additional concern. Since it is illegal to deliberately pass on HIV to someone else (as highlighted by the 2004 trial of Olympian Anthony Whitfield; see SW's "HIV: Criminal Intent," Dec. 1, 2004), he says there is the possibility that partner-notification records, documenting a person's sexual trail, could be used in the context of criminal prosecution. Records of private doctors are privileged, inaccessible to prosecutors. But health department records? "It's a gray zone," he says.