POZ Exclusives : Peter Staley: Why It's Right to Test

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June 1, 2006

Peter Staley: Why It's Right to Test

June 4, 2006 (New York Times Op-Ed)—The New York City health commissioner has proposed legal changes that would make H.I.V. testing easier and more widely available. But the New York State Legislature has yet to pass these changes.  In the meantime, more than 1,100 New Yorkers every year unnecessarily progress to full-blown AIDS because their illness went undiagnosed for almost 10 years.

AIDS groups should be screaming for expanded testing, and many of them are. But some are fighting any change, as though 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 that you were just waiting to die. William F. Buckley was calling for tattoos to identify people with H.I.V., and others wanted to quarantine us.

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

But the AIDS epidemic has changed a lot since the first cases were reported 25 years ago this week. Today, treating H.I.V. can delay, sometimes indefinitely, the onset of AIDS. I’ve also seen AIDS patients I expected to die at any moment recover their lives and strength with effective treatment. As more medications have become available, more people with H.I.V. and AIDS are finding drug combinations that work for them.

All that has made H.I.V. testing—the first step toward dealing effectively with the disease—a lot more important. Testing itself has become less stressful as well. While older tests required patients to wait two weeks for results, new technology gives them an answer 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 must be kept at all costs makes it seem more shameful than other diseases. Nancy Nielsen, a doctor based in Buffalo, recently commented that the special treatment for H.I.V. “has contributed to the stigma.”

Most leading AIDS organizations have fought efforts to expand access to H.I.V. testing. For instance, treatment can almost eliminate the risk of a pregnant woman passing H.I.V. to her child during birth. But when New York State proposed offering routine H.I.V. testing for pregnant women, these groups insisted that women would shun health care just to avoid the test. The program, however, has been an overwhelming success since it started in 1996: pregnant women were grateful that the virus was detected so they wouldn’t transmit it to their baby.

Dennis deLeon, president of the Latino Commission on AIDS,  recently described his own change in attitude about testing. He had spoken with a pregnant woman who had no idea she was at risk for H.I.V.—she had been married and faithful, and had never used drugs. When her test came back positive, she was shocked, he recounted. “I had strongly opposed this testing program, but when I encountered this woman, I realized that I had been wrong,’’ he said. “My activism may have served to deprive other women of knowing their status during pregnancy. And that troubles me a lot.”

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

In the last century, patients were sometimes not told they had cancer, as well-meaning doctors tried to protect them from the anguish of knowing that 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 New Yorkers have to get sick to find out that they are ill.  We can do better than that, and we should.

What do you think? Join the Forum discussion on Peter's story by clicking here.


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