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Reporting

The greatest failing in the management of the HIV epidemic has been limiting case reporting to CDC-defined cases of AIDS. When a test for HIV infection became available, the CDC should have demanded that local and state public health departments require the fully identified reporting of every HIV carrier. Irrespective of whether this information was used for contact tracing or other disease control interventions, it is fundamental to any epidemiologic investigation of the epidemic. While a few jurisdictions required the reporting of HIV infection shortly after the ELISA and Western blot tests became available, only recently has reporting become the norm. Unfortunately, even states that require reporting have been forced to provide for anonymous testing. California and New York, the states with the largest number of HIV carriers, continue to refuse to require or accept reports of HIV infection.

Gay advocates and civil libertarians opposed the reporting of HIV because of their fear that the lists of infected persons would be used for intimidation and harassment. This was an especially strong fear in jurisdictions where homosexual sexual practices were illegal. The irony is that lists of gay men already existed in health departments nationwide in the reports of infection with early syphilis or hepatitis B, both reported by name, means of infection, and potential contacts. The most prominent of these diseases was syphilis. Infectious syphilis was predominantly a homosexual disease during the 1970s and the early 1980s. Most of the first victims of AIDS were already on health departments' lists of persons infected with syphilis. When the lists of persons who had been infected with syphilis were combined with the lists of persons who had been infected with hepatitis B, the result was a fairly complete roster of gay men who engaged in high-risk sexual behavior. Had law enforcement personnel wanted to use health department information to persecute homosexuals, they would not have needed HIV lists to identify their targets.

Because of the failure to require the reporting of HIV carriers, it is impossible to know how many persons are already infected with HIV or to evaluate the dynamics of spread into new risk groups. The emphasis on reporting AIDS cases ensures that all the information about the spread of HIV is out of date by the average delay between initial infection and diagnosis of AIDS. By the time the first AIDS cases appear in a new risk group, many individuals at risk in the group will already be infected with HIV. This was the situation with homosexual men, then IV drug users, and now inner-city adolescents. This lack of current information also masks the transformation of HIV into a heterosexual venereal disease.


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