Pennsylvania Debates HIV Reporting, Lack of Data Frustrates Treatment, Prevention Efforts
Pennsylvania public health officials have been "robbed" of current information about the HIV population, data that could provide a "key weapon" in the fight against HIV/AIDS, due to the lack of an HIV reporting system, the Philadelphia Inquirer reports. Pennsylvania is one of 11 states that does not have an HIV reporting system, although the state does require doctors and clinics to report AIDS cases. The AIDS-only reporting system means that the state's statistics on the spread of the virus are "in effect" seven to 10 years out of date because AIDS can take that long from the time of infection to develop. The state has "no sure way of knowing" if it is facing a growing HIV epidemic and cannot make "informed decisions" about how to spend the $22 million it receives from the federal government for treatment and prevention programs. State officials and AIDS advocacy groups have been involved in a "long-simmering" dispute over what type of HIV reporting system, if any, the state should implement. Those in favor of a reporting system must choose between names-based reporting or code-identifier reporting, which would allow people to remain anonymous.
'Steering Clear of Controversy'
In 1997, the CDC recommended that all states implement an HIV reporting system, but Pennsylvania did not hold its first hearings on the matter until 1999, and no action was taken until February of this year when the governor's office announced plans for a names-based system to be implemented by January 2002. If adopted, the plan would require all doctors and labs to report positive HIV tests to county health officials. Critics blame the delay on Gov. Tom Ridge's (R) desire to "steer clear of controversy" while he was being considered as a possible vice presidential nominee. Bruce Flannery, director of the Pennsylvania Coalition of AIDS Service Organizations, which represents more than 100 groups and has lobbied for a coded reporting system, said, "In Harrisburg, the rule was: under no circumstances will any agency create a continuing controversy for the governor." But a spokesperson for Ridge said, "Politics did not play a role," adding that the health department announced its decision "when it was ready."
Concerns for Privacy
Coalition members "fear" that the names-based system will "deter" those "most at risk" for HIV infection -- minorities, sex workers, intravenous drug users, parolees and illegal aliens
-- from getting tested. They are concerned about "
privacy leaks" and cite a 1994 incident in which the Philadelphia AIDS office "inadvertently" passed the names, sexual orientation and HIV status of some members of the city's AIDS registry to the CDC. Studies done to determine whether
names-based reporting deters people from testing have come to "conflicting conclusions." Lisa Solomon,
Maryland's AIDS administrator, said that studies on the state's coded system, adopted in 1995, have shown that blacks listed a fear of identification as a "key reason" for delaying HIV testing. However, George DiFerdinando, a deputy health commissioner in New Jersey, which utilizes a names-based system, said that confidentiality concerns are unfounded and pointed out that his department has been "scrutinized" by AIDS advocates, the ACLU and the state's ombudsman, and "nobody has been able to find any privacy breaches." The CDC does not favor one system over the other, but Dr. Helene Gayle, head of the agency's HIV-prevention office, said that names-based reporting is "simpler than and just as confidential as a coded system." The Pennsylvania proposal would allow anonymous testing at specific clinics, a provision included by most states in names-based registries. Pennsylvania officials say they "carefully considered" Maryland's coded system, but concluded it is "more costly" and may actually raise the risk of "privacy breaches" in the coding process at doctor's offices. They also said a coded system would "reduce the chances that HIV-positive people could be linked to medical care, and that their sex partners would be notified of the risk of HIV infection." An HIV reporting system is needed in Pennsylvania by 2004, when federal officials plan to link HIV funding to the number of reported HIV infections. States without reporting systems stand to lose out on federal money. "However it's done, I want HIV reporting," Philadelphia HIV epidemiologist Kathleen Brady said. "Something is better than nothing," she added (Collins, Philadelphia Inquirer, 4/1).
