Health officials estimate that approximately 25 percent of all HIV/AIDS cases are undiagnosed.
That’s why most experts and advocacy groups support expanding HIV testing in the hopes of reducing the spread of the virus. If people know they’re HIV positive, they’re more likely to engage in less risky behavior and inform sexual partners that they are HIV-positive.
Where experts and advocates disagree is on the best way to make HIV testing more widespread.
Two bills pending in the New York State Legislature seek to expand HIV testing by making it a more routine part of health care. But one bill, introduced by Assemblywoman Nettie Mayersohn, D-Queens, has drawn fierce opposition from many of the state’s AIDS advocacy groups, who prefer a bill introduced by Assemblyman Richard Gottfried, D-Manhattan, and supported by New York State Health Commissioner Richard Daines.
At issue is Mayersohn’s decision to eliminate the requirement that health care providers get written consent from people before they are tested for HIV, and provide pre-test counseling and post-test counseling when a negative test is reported. Doctors would inform patients that they would be tested for HIV; patients could decline orally if they did not want the test.
But many advocates say a brief yes or no conversation about the test is not enough.
“People should know what they’re being tested for, and have access to whatever information they need,” said Linda Glassman, executive director of the Corporation for AIDS Research, Education and Services, or CARES, based in Albany. Right now, “There’s counseling before and after the test because if people test positive it can be quite devastating. … How people learn about their HIV status needs to be carefully thought out.” Glassman didn’t question the need to expand HIV testing. “We thought rates of infection had stabilized, but they’re going up,” she said.
Under the Gottfried bill, a separate HIV consent form would no longer be required. Instead, patients would consent to the test on the general consent form for medical treatment and procedures that patients fill out during routine visits to the doctor. The process of providing pre- and post-test counseling would be simplified; doctors could provide information in writing, rather than verbally, with the goal of expediting the process. Testing would be required to be offered to patients in hospital emergency rooms, inpatient care and primary care in hospitals and clinics, with a few exceptions.
Steps have already been taken to make HIV testing more widespread.
In 2006, the Centers for Disease Control and Prevention issued new guidelines that recommend routine HIV screening of adults, teenagers and pregnant women in health care settings in the United States. Previously, the CDC had recommended annual screenings for people with a “high risk” of contracting HIV.
Mayersohn said her bill has the support of many of New York’s doctors; a similar approach, she said, has successfully expanded HIV-testing in San Francisco.
Written consent, she said, “actually frightens people away from being tested,” she said. Right now, “there’s a whole list of talking points [doctors are supposed to go over]. It’s not necessary. … Right now doctors are not doing the test because it takes too much time. They’re not urging people to get tested, and we want people to get tested.”
If her bill passes, things would be much simpler, Mayersohn said. Doctors would ask people whether they want an HIV test, much like they ask a patient whether they want to get tested for high cholesterol or diabetes. “If a patient doesn’t want the test, they can say no. They don’t need a lengthy conversation. They need a yes or no.”
Dr. Douglas Fish, medical director of the AIDS Treatment Center and inpatient HIV unit at Albany Medical Center, said he supports requiring some form of written consent. He said it’s important to have a conversation with the patient about what is going on and why; this, he said, makes the patient a participant, and deepens their understanding of the process.
TRAUMA OF TESTING
AIDS may not have the stigma it had 20 years ago, but it’s still a big deal, Fish said. For patients, getting an HIV test can still be a traumatic experience; eliminating written consent suggests that it’s just like any other test, even though it’s not.
“There’s this issue of whether the HIV test is still worthy of special consideration,” he said. In his opinion, “You want it to maintain a special status because so much is at stake,” he said. “AIDS is different from other diseases in how it changes your life.”
“If you ask health-care providers, probably 98 percent would say that written consent is a barrier,” Fish said. “It slows them down. There’s no question that that’s true. If a doctor could just check a box, that would make it easier for the doctor and he’d be more likely to do the test.”
Fish said he lived in a state that required only verbal consent before coming to New York.
The verbal consent, he said, didn’t make the process of determining who should get an HIV/AIDS test any less subjective; doctors were still more likely to offer the test to people in certain demographics, and overlook other groups.
“Sometimes the reason for offering the test might be the way someone’s dressed, the way someone looks,” he said.
Glassman agreed. HIV infections among people over the age of 55 are on the rise, but doctors seldom ask people in this age group if they want an HIV test. “You have situations where doctors are making guesses about whether people need an HIV test. They tend to make these judgments based on class and race.”
Matthew Lesieur, director of public policy for the New York AIDS Coalition, said the New York AIDS Coalition is opposed to eliminating written consent, but believes doctors should offer the HIV test to all patients. This, he said, would go a long way toward normalizing the process and eliminating the prejudices people have about the disease.
“If you believe what’s said about the number of people who have no clue they are HIV positive, somewhere we’re failing to identify people who are HIV positive,” he said. “We need to find new and creative strategies to identify them.”
The AIDS Council of Northeastern New York, based in Albany, administers 1,800 HIV tests each year.
“We don’t find informed consent to be a barrier,” said Julie Harris, deputy executive director of the AIDS Council of Northeastern New York.
She said that if doctors are concerned that they don’t have enough time to do pre and post test counseling and get written consent, “it doesn’t have to be a lengthy process. … The process is not complicated.”
Harris preferred the Gottfried bill, but questioned the need to change the process.
The people who are at the highest risk for HIV often do not seek routine health care; many of them are tested for AIDS at community-based clinics and testing sites, rather than doctor’s offices.
“That’s the best way to get people who engage in risky behavior,” she said.
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