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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
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.
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
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.”
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.
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.
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