CDC renews call for HIV reporting
CDC renews call for HIV reporting
Physicians must educate selves, patients
Hospitals across the country may be required to amend their protocols for reporting infectious diseases to the state health registry. That’s because the Centers for Disease Control and Prevention in Atlanta recently renewed calls for state case surveil lance (reporting of names of patients) of HIV infection, citing advances in available AIDS treatments that are making it difficult to track the HIV epidemic.
Mandatory reporting of AIDS cases to state health departments has been in effect in all 50 states since 1993. So far, 32 states have some form of mandatory HIV reporting, and experts expect others to follow suit.
Treatments drive needed change
"The Centers for Disease Control and Prevention [CDC] recommends that all states and territories conduct case surveillance for human immuno deficiency virus [HIV] infection as an extension of current acquired immunodeficiency syndrome [AIDS] surveillance efforts," reads the current draft of the CDC report, Guidelines for National HIV Case Surveillance, Including Mon i tor ing for HIV Infection and Acquired Immunode ficiency Syndrome, updated on the center’s Web site Dec. 10, 1998.
"Recent advances in HIV treatment have slowed the progression of HIV disease for infected persons on treatment and contributed to a decline in AIDS incidence. These advances in treatment have diminished the ability of AIDS surveillance data to represent trends in HIV incidence or to represent the impact of the epidemic on the health care system. As a consequence, the capacity of national, state, and local public health agencies to monitor the HIV epidemic has been compromised," the draft report states.
"Simply reporting cases of fully developed AIDS and not reporting cases of HIV infection doesn’t serve any epidemiologic function anymore," says Ronald Bayer, professor of ethics at Columbia University in New York City who specializes in ethical issues related to AIDS care and testing. "We now need to know where HIV infection is, not where AIDS cases are."
To continue making progress toward eliminating the disease, public health efforts at tracking it must be supported. (For a state-by-state breakdown of current surveillance efforts, see charts, p. 17.)
"Before much therapy was available, there was always a concern that mandating reporting of HIV cases would divert people from HIV testing to begin with, and this occurred at a juncture when people realized that getting everyone tested so people knew their status was important from the point of view of public health," Bayer adds.
However, as more advanced therapy becomes available, the focus has been shifting to the need to track the spread of the virus more accurately in its early stages and the need to focus public treatment and prevention initiatives.
Infection control will be focal point
Implementation of the CDC’s recommendation would require action by the state legislature or the state’s health officer to amend the state rule for reporting infectious diseases, says Patricia Fleming, MD, chief of the HIV/AIDS surveillance branch at the CDC. "All of those different paths require public hearings or some sort of public comment to allow the public to review the proposal," she adds.
After approval, staff from the public health department would go to hospitals with large numbers of HIV and AIDS patients and meet with the infection control practitioners who are assigned the task of making sure the facility is in compliance with the state law. "In most hospitals, infection control nurses would have this responsibility," Fleming says.
The nurses may have their work cut out for them when trying to get physicians to report HIV cases. "Doctors typically don’t like reporting in general," Bayer says. "Either they find it to be administratively burdensome, or they feel that it violates the doctor-patient relationship."
Although reporting of STDs such as syphilis and gonorrhea has been mandatory in all states for years, Bayer says he suspects many physicians still don’t report all cases because of the stigma attached to STDs and a perception that the information could become public.
Many patients fear that if their names are reported, they will lose their health insurance or jobs, he says. "We need to reassure them that these registries are not available to insurance companies or their landlord or employer; they are not subject to illicit use. The doctors also must be convinced that the patient is not going to be put in harm’s way. I think that there should be a double level of counseling that should take place. The public health department should reach out to physicians to inform them about how reporting takes place and how their patient’s identity will be protected. The physician in turn should counsel the patient."
Contrary to many theories, a recent yearlong study of high-risk populations in nine states with HIV case surveillance found that the most often-reported reason for not undergoing an HIV test was the fear of a positive test result, not the fact that names would be reported to the state health department, Fleming says. "In many cases, the people interviewed were not even aware of their state’s policy about reporting," she says.
A significant number (4%) of the untested gay men surveyed did list the fear of being reported as the main reason they had not sought an HIV test, she says. That’s one of the reasons the CDC continues to recommend states make anonymous testing available.
In some cases, a person may want to be tested for the virus without others knowing. They still should have the opportunity to find out whether they are positive in an anonymous setting, says Fleming. "A patient’s name will only be reported if they receive an HIV-positive diagnosis from a health care provider, and the laws in different states specifically spell out what is considered a provider. People tested at anonymous testing sites or through the use of home kits would still not be reportable."
However, when these people sought treatment for their illness, their physician would report the case then, she adds.
Sources
• Ronald Bayer, PhD, Professor of Ethics, Columbia University, HIV Center for Behavioral and Clinical Studies, Columbia-Presbyterian Medical Center, 622 West 168th St., New York, NY 10032.
• Patricia Fleming, MD, Chief, HIV/AIDS Surveillance Branch, Centers for Disease Control and Prevention, 1600 Clifton Road NE, Atlanta, GA 30333.
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