All U.S. States to begin names-based reporting of HIV cases by end of 2007

September 27, 2015

Beginning this fiscal year, the funding formulas used by HHS to calculate Ryan White Program grants include only HIV data from states that use names-based reporting systems, the AP/Journal Register reports. Vermont, Maryland and Hawaii are the only states not currently using a names-based reporting system to track HIV cases. CDC in 1999 endorsed names-based reporting and in 2005 recommended that states use names-based reporting systems. Timothy Mastro, deputy director of CDC's Division for HIV/AIDS Prevention, said, "After many evaluations of code-based systems, it became clear that those systems do not meet CDC standards for HIV data." He added that syphilis, tuberculosis and AIDS cases are tracked by names-based systems.

Advocates' Concerns Many HIV/AIDS advocates are concerned that the transition to a names-based system will discourage some people from seeking HIV tests or treatment, the AP/Journal Register reports. "I've not so much changed my opinion as surrendered," Ron Johnson -- deputy executive director of Aids Action in Washington, D.C -- said, adding, "I still believe code-based reporting is valid and is preferable for HIV reporting. It, for all practical purposes, has become a losing battle." Some advocates also are concerned that security breaches could lead to the names of HIV-positive people being released. A 2005 security breach in Palm Beach County, Fla., involved the names of 6,500 HIV-positive people being erroneously e-mailed to 800 county health workers. Similar security breaches have occurred in California and Kentucky, the AP/ Journal Register reports. In addition, some advocates are worried that a names-based system would reduce the number of minorities and low-income people who receive HIV tests because they might be less likely to trust that the government would keep their names confidential. Catherine Hanssens of the New York City-based Center for HIV Law and Policy said that names-based reporting "can affect if (disadvantaged) people come back for care" and "how they describe to other people their experience of getting tested." According to the AP/Journal Register, some physicians are telling HIV-positive people to use false names, but health officials say it is impossible to determine how many physicians and patients are not reporting their names. Health officials also say it will be impossible to determine whether any decline in HIV cases can be connected to names-based reporting. New HIV cases in Illinois decreased by 14% from 2005, the last year code-based reporting was used, to 2006, although there had been an 8% decrease in new HIV cases in 2005.

State Efforts To Protect Privacy William Wong, medical director of the AIDS division of the Chicago Department of Public Health, said the state's old code-based system, which assigned HIV-positive people a unique identification code, was "instituted to protect the people's confidentiality because of fears of stigmatization and potential disclosure to insurance companies and family members." The state in 2006 began using a names-based system. Under the new system, staff members who have access to the database must take an oath of confidentiality and undergo special training. The names also are stored on a stand-alone computer system that is in a locked area, according to the AP/Journal Register. A Vermont bill (SB 192) prohibits the storage or processing of any information that could identify HIV-positive people on network computers or laptops. The bill also allows civil lawsuits for malicious disclosure of such information, according to the AP/Journal Register (Johnson, AP/Springfield State Journal Register, 4/2).

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