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September 27, 2006
If You Only Knew... Behind The Battle Over Routine Testing
by Kellee Terrell
September 27, 2006—A 55-year-old woman walks into her suburban Denver doctor’s office for a routine checkup. She has HIV on her mind but keeps quiet. Her young doctor, aware that the woman has begun dating since her husband’s recent death, says nothing about getting tested for fear he might offend her. Instead, they discuss her grandkids, her diabetes and her golf handicap.
There’s one thing the AIDS community can agree on in the lively debate this week over the federal Centers for Disease Control’s new recommendations that all Americans 13 to 64 get tested without having to sign paperwork or sit down for counseling beforehand: Those pesky little HIV silences at the doctor’s office have got to go. An estimated 250,000 HIV positive Americans don’t know they have it—one in four of all those infected—and they could find treatment and avoid spreading the virus if they did.
“Really, everybody should be tested at some point,” argues Leonard Robinson, MD, a Chicago-area general practitioner who will add HIV to his standard checklist if the CDC’s guidelines makes it into Illinois state law. Nowadays, singles with numerous sexual partners are just about the only patients Robinson suggests tests for.
But the national consensus ends there. The AIDS community is deeply divided on how to roll up the most sleeves while violating the fewest rights—and also deal a blow to anti-HIV stigma. The San Francisco AIDS Foundation (SFAF) is in favor of the new CDC guidelines, for instance, while the New York City-based Gay Men’s Health Crisis (GMHC) has major reservations.
Critics of the recommendations are vexed by the CDC’s decision that neither written consent nor pretest counseling is necessary anymore. Bebe Anderson, HIV project director at the legal advocacy group Lambda Legal, goes so far as to call the recommendations a “backward move away from the basic principles of informed consent.”
Also, opponents ask, what happens when the simple yes or no of oral consent takes place away from the cushy comfort of a private physician’s office—in the chaos of a hospital emergency room, where most poor Americans happen to get their health care? That is the crux of the matter for patient advocates like Rose Saxe, an American Civil Liberties Union staff attorney who believes that “in urgent care, patients [could] unknowingly get tested for HIV, get a positive result and [without] pretest counseling, be less likely to receive follow-up care.”
Supporters of the guidelines, on the other hand, say times have changed and HIV is ready to move out of the shadows and be treated like other diseases—no special rules for consent or counseling—especially if it means more people will be tested.
By making HIV an exception, “we are saying that it’s worse than other diseases,” says Lloyd Bailey, MD, an HIV specialist at St. Vincent’s Midtown Hospital in New York City. “Cancer used to be the same way: We didn’t talk about it. I don’t think that was a good way to deal with the problem.” Adds Timothy Mastro, MD, acting director of the CDC’s Division of HIV/AIDS Prevention, “By normalizing testing, we will be destigmatizing HIV testing.”
Both sides in this discussion are concerned that putting the CDC recommendations into effect will strain resources. The medical system may not be prepared to deal with the influx of new HIV patients that is sure to follow an increase in testing—not to mention the counseling needs of those just diagnosed. “Are doctors in places such as Montana, Idaho and Wisconsin, places where HIV infections are low, prepared to get people plugged into proper care?” asks David Malebranche, MD, MPH, an HIV testing expert at Emory University in Atlanta.
Likewise, treatment resources are already scarce. “We still have ADAP waiting lists in some states,” says Sean Barry, director of prevention services for the Community Health HIV/AIDS Mobilization Project (CHAMP). “And with Ryan White being [cut in some states], I don’t know where the CDC thinks they are going to link these people to treatment.”
Not that the CDC is alone in pushing for changes in the way HIV tests are conducted; the New York State legislature is among a range of institutions considering routine testing. But this kind of message from the federal government sets a tone.
Whether you feel it’s the right tone or the wrong one, the CDC’s new guidelines are sure to get people talking. All the better if the conversation continues right into their doctor’s offices and if it comes from both sides of the room.