June 4, 2006 (New York TimesOp-Ed)—The New York City health commissioner has proposed legal changesthat would make H.I.V. testing easier and more widely available. Butthe New York State Legislature has yet to pass these changes.  Inthe meantime, more than 1,100 New Yorkers every year unnecessarilyprogress to full-blown AIDS because their illness went undiagnosed foralmost 10 years.

AIDS groups should be screaming for expandedtesting, and many of them are. But some are fighting any change, asthough the epidemic hasn’t evolved since the 1980’s. In those days,there were important reasons to protect people getting tested for AIDS.There were no drugs to treat the disease. A positive test meant thatyou were just waiting to die. William F. Buckley was calling fortattoos to identify people with H.I.V., and others wanted to quarantineus.

That’s why AIDS groups—like Act Up, the one I was involvedwith at the time— argued that H.I.V. infection was very different from,for instance, diabetes, and that we needed to treat it differently. NewYork, along with other states, adopted policies that came to be knownas “H.I.V. exceptionalism.” The state passed laws to protect patientsfrom unwanted testing. These laws required extensive counseling andwritten informed consent that although burdensome for health careproviders, offered vital protections in the epidemic’s early days.

Butthe AIDS epidemic has changed a lot since the first cases were reported25 years ago this week. Today, treating H.I.V. can delay, sometimesindefinitely, the onset of AIDS. I’ve also seen AIDS patients Iexpected to die at any moment recover their lives and strength witheffective treatment. As more medications have become available, morepeople with H.I.V. and AIDS are finding drug combinations that work forthem.

All that has made H.I.V. testing—the first step towarddealing effectively with the disease—a lot more important. Testingitself has become less stressful as well. While older tests requiredpatients to wait two weeks for results, new technology gives them ananswer in 20 minutes.

But the rigorous demands of H.I.V.exceptionalism are limiting the widespread availability of the H.I.V.test. And oddly enough, treating H.I.V. infection as a secret that mustbe kept at all costs makes it seem more shameful than other diseases.Nancy Nielsen, a doctor based in Buffalo, recently commented that thespecial treatment for H.I.V. “has contributed to the stigma.”

Mostleading AIDS organizations have fought efforts to expand access toH.I.V. testing. For instance, treatment can almost eliminate the riskof a pregnant woman passing H.I.V. to her child during birth. But whenNew York State proposed offering routine H.I.V. testing for pregnantwomen, these groups insisted that women would shun health care just toavoid the test. The program, however, has been an overwhelming successsince it started in 1996: pregnant women were grateful that the viruswas detected so they wouldn’t transmit it to their baby.

DennisdeLeon, president of the Latino Commission on AIDS,  recentlydescribed his own change in attitude about testing. He had spoken witha pregnant woman who had no idea she was at risk for H.I.V.—she hadbeen married and faithful, and had never used drugs. When her test cameback positive, she was shocked, he recounted. “I had strongly opposedthis testing program, but when I encountered this woman, I realizedthat I had been wrong,’’ he said. “My activism may have served todeprive other women of knowing their status during pregnancy. And thattroubles me a lot.”

While no one should be forced to receiveunwanted medical care, there’s nothing in the proposed legal changesthat would do that. These changes simply make it easier to offer H.I.V.testing in a variety of settings, like emergency rooms and healthfairs, to people who want or agree to be tested.

In the lastcentury, patients were sometimes not told they had cancer, aswell-meaning doctors tried to protect them from the anguish of knowingthat they would die. AIDS groups have usually fought that mindset,except when it comes to H.I.V. testing. Right now, state legislation is“protecting” people so much that one in four H.I.V.-positive NewYorkers have to get sick to find out that they are ill.  We can dobetter than that, and we should.

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