CDC calls name reporting a local issue
CDC calls name reporting a local issue
Agency wants anonymous testing sites
The Centers for Disease Control and Prevention recognizes the benefit that HIV name reporting adds to partner notification efforts, but the agency sees any linkage between surveillance and prevention as an issue that should be decided at the local level.
"Many people talk about HIV name reporting’s potential link to care programs or other prevention activities, but we feel there is no reason to link these issues," says Kevin DeCock, MD, director of the CDC’s division of HIV/AIDS prevention, surveillance, and epidemiology. "We see that as being addressed at the local level through community planning and individual providers."
Always a contentious issue, partner notification for people who test positive for HIV is recommended by the CDC. However, the practice varies from community to community, public health officials note. The growing awareness of the potential benefits of treatment for early HIV infection has underscored the importance of contact tracing. Indeed, some public health officials argue that, given the new treatment developments, partner notification should be indicated for HIV the same way it is for other sexually transmitted diseases.
As it is, some states make it illegal for public health workers to notify the partners of HIV-positive patients unless the index patient refuses to cooperate. That frustrates health care professionals like Robert Wood, MD, medical director of the AIDS Project at Seattle-King County Department of Public Health.
"Physicians in Washington are saying very strongly they would like the opportunity to provide names of people who test positive to public health so we can assure that their patients receive the counseling they may not otherwise receive," he told other members of the CDC’s Advisory Committee on HIV and STD Prevention. "Frankly, I think that one of the driving forces of name reporting is so local providers can turn the responsibility over to public health officials that has typically been there for other STDs."
Linking contentious issues
While requiring HIV testing sites to provide names to public health departments could get more people into early care, many AIDS patient advocates are wary of having names easily accessible in the public domain. Moreover, CDC officials are wary of linking HIV name reporting, a surveillance tool, to partner notification a prevention tool, and a controversial one at that. As one CDC official put it, "We don’t want to link one contentious issue with another."
At the same time, CDC officials note that a national campaign is needed now to promote the benefits of knowing one’s HIV status. "It should become totally normal to know your HIV status, and that has to be made through a continued effort to reduce stigma around HIV," DeCock said.
A nationwide HIV name reporting surveillance system would seem to preclude the need for anonymous testing, but CDC officials insist that anonymous testing still has a role to play. "The CDC strongly believes that anonymous testing should remain available wherever it is not against state law," said DeCock, adding that, much to the CDC’s dismay, 10 states make anonymous testing illegal. Anonymous testing should be available for the minority of individuals who, for whatever reasons, will not seek testing unless it is anonymous, he explained.
When New Jersey instituted HIV name reporting seven years ago, the state required at least six anonymous testing sites to remain open. Up to 15 sites have been operating, and they accounted for about 10% of all HIV tests in the state. In recent years, however, the testing load has dropped dramatically, says Doug Morgan, assistant commissioner for the state’s division of AIDS prevention and control.
"As people realize there is now treatment to help, they can’t take an anonymous lab slip to a physician and get care," he said. "They need a name."
Indeed, the push to follow up HIV diagnosis with CD4 count and viral-load testing raises new confidentiality concerns that have not been adequately addressed, DeCock warned.
Anonymity is lost’
"Even an anonymous test should trigger a referral into the medical care system, and once an individual enters the medical system, anonymity is lost," he said. "That is where the danger lies, and that is a reality of this new era."
While patient advocates are not as concerned about the security of patient records in medical facilities, most patient-confidentiality cases have occurred in the private setting, not the public one, says John Ward, MD, chief of the CDC’s HIV/AIDS surveillance branch. "We have done a legal search and found many more breaches that have gone to court around the health care system than the surveillance system," he said.
Advisory committee member Gail Boland, MD, chief of the STD control branch for the California Department of Health Services, also registered a warning: "I am more concerned about confidentiality in the medical community than in public health," she said. "I work in San Francisco General Hospital, and I can tell you their business is all over the place there."
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