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About Just out. (Portland, OR) 1983-2013 | View Entire Issue (March 19, 1999)
1 2 J “ ** t ? march 19.1999 rrrjTrrm n e w s T he N ame G ame Controversy continues to bubble over H IV names reporting, but the boiling point is yet to be reached by Bob Roehr veillance efforts, will begin to include names J T andatory names reporting is reporting as a condition of receiving federal m 1% bad science, bad public health I % / 1 policy and a waste of funds funds. T he belief was fueled several months ago when the C D C asked state health officials % / 1 that should be directed to real across the country how and when they intended A ID S prevention and health to implement HIV names reporting.) care,” argues Catherine Hanssens, an attorney Meanwhile, the comment period for the with the Lambda Legal Defense and Education draft is winding down, thus prompting the issue Fund, which opposes policies that call for the to heat up once again. names of people with HIV to be reported to gov Lambda Legal Defense and Education Fund ernment health departments. circulated a letter of opposition to the C D C Hanssens isn’t alone in her opposition. position; it was signed by supporters of Lambda’s “By requiring me to report the names of stance and released to the press Feb. 21. those who test positive, the government drives a The letter says the C D C “has trivialized the wedge between me and my patients. This is dan serious concerns raised by community members gerous public health policy,” charges Dr. Robert regarding the harmful impact of names reporting Cohen, the former vice president of the New on populations disproportionately affected by York City Health and Hospitals Corporation. the epidemic.” Meanwhile Steve Morin, director of the T he epicenter of opposition is New York. AID S Policy Research Center at the University Last year the state Leg of California at San islature enacted a law Francisco, opposes requiring names names reporting reporting. It was sup “because there is sig posed to be imple nificant evidence of a mented on Jan. 1 but deterrent effect” on was pushed back to people getting tested April 1. for HIV, he says. “It is turning out to The effect is mini be more complicated mal for heterosexuals, and more expensive he adds, and very high than the proponents for gay men. “It is more indicated,” says of a psychological Morin. “W here will issue, they don’t want the money come from? their name on a gov W ill they eliminate ernment list,” he con prevention in order to cludes. record namesT’ Many AIDS advo Som e A ID S cates agree the current heavyweights are reporting system, H IV/AIDS activist Alexander Robinson backing Lambda. The based upon an AIDS- list includes Gay Men’s Health Crisis in New defining illness, is of little value in an era of York, A ID S Project Los Angeles, the San Fran combination therapy that keeps many people cisco A ID S Foundation, the A ID S Action from becoming sick. Many believe that a system Committee of Massachusetts, and the national recording incidence of HIV infection is needed A ID S Action Council. to better understand the changing demographic But at least as interesting are the names that nature of the epidemic in order to guide preven tion and service delivery. are not on the list. They include large service The sharpest disagreement comes over the providers such as the Whitman-Walker Clinic in Washington, D.C., and the National Associ way those records should be gathered. One fac tion supports use of a coded system known as ation of People with AIDS. “unique identifiers.” They say the data collected Also missing from the list are organizations will be just as good, individual privacy will be in states that already have adopted names better protected, and as a result, people will be reporting as their standard. Those states— less fearful of getting tested. almost 30 in all— are home to about a third of The national Centers for Disease Control the nation’s people with HIV and AIDS. and Prevention studied the unique-identifier It isn’t so much that people are embracing systems in use in Texas and Maryland and con the C D C position, but they see the spirited cluded there are operational and structural flaws opposition to names reporting as a distraction that compromise the data gathered. Texas is from more important concerns, says Alexander moving to a names-reporting system. Robinson, who has served as an A ID S lobbyist Furthermore, a unique-identifier system is for the American Civil Liberties Union. “It is more costly to implement, and there is conflict somewhat disingenuous to argue that somehow ing evidence regarding the long-term effect of HIV names reporting is going to be more intru names reporting on whether people get tested. sive” than existing programs, he adds. Robinson says lower-income people “give up n October 1997, C D C officials told The New all sorts of information in order to have access to York Times the agency had no immediate entitlement programs. They are more con plans to require states and cities that receive its cerned about whether there is going to be some funding to keep records on individuals who test thing available in terms of care than whether or positive for HIV. However, they did not rule out not you are going to take their name.” the possibility that the C D C would eventually He notes the limitations of either reporting institute such requirements. system, saying they record only those who show The C D C has already invited public com up to be tested. ment on a draft proposal that promotes the idea “T he real effort should be put into making of mandatory names reporting. 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