Don't Ask, Don't Tellby Adam Graham-Silverman
Do you have any past or present medical complaints? Anxiety or depression? Have you ever been hospitalized? Arrested? Incarcerated? Do you use alcohol? Marijuana? Crack? Heroin?
The questions on the patient information sheet at Health and Education Alternatives for Teens (HEAT), a Brooklyn HIV outreach and testing group, go on for 14 pages. They get more and more specific.
Have you ever had sex for drugs? Have you ever had survival sex—sex in exchange for essential items like food and shelter?
Among the teens at the clinic, a “yes” is not so uncommon. The two largest patient groups at HEAT are young black men who have sex with men but who may not identify as gay, and young women who have sex with older men often for money or material benefits. These groups are at high risk for getting HIV, and they are also the hardest for community programs to reach—which is why last month’s recommendation from the Centers for Disease Control and Prevention (CDC) that HIV testing become part of routine medical care has those at HEAT concerned.
The CDC recommendation would include HIV testing in routine ER procedures or when patients get their blood drawn to check their cholesterol. While patients would always be told about the test and given the choice to decline it, pre-test counseling would be eliminated, as would a separate consent form for an HIV test. These protections are currently part of New York State law, but city Health and Mental Hygiene Commissioner Thomas Frieden wants to follow the CDC’s advice and get rid of them. His attempt in Albany last spring to do so was unsuccessful, but Frieden promises to be back, this time equipped with the CDC recommendations.
Finding and working with at-risk teens means asking a lot of tough questions. “If you don’t do pre-test counseling how are you gonna know this is a young [man who has sex with men] who doesn’t disclose his sexuality anyplace else? Unless you ask him directly, in a teen-friendly environment?” asks Jeffrey Birnbaum, HEAT’s director since its founding in 1992.
Without counseling, Birnbaum says angrily, it will be impossible to forge the relationships that allow HEAT to reach out to the most vulnerable people and get a real understanding of the issues they face. Counseling is the first step in referring them for medical and mental health services, he says, and tracking them to make sure they don’t fall through the cracks. “It just strikes me as a way to drive people away from care,” Birnbaum says of plans to test without counseling or consent. “When you’re dealing with communities of color that have a huge distrust of the medical establishment to begin with, it just doesn’t come across well no matter what the intentions are.”
At worst, Frieden’s plans are a misguided attempt to fix HIV testing on the cheap. Hospitals and clinics might test more people, but they would do nothing to find ways to reach those who need it most. Meanwhile, the plan would strip away support structures that educate people about prevention and help people deal with the psychological and legal fallout of a positive test.
Have you ever been tested for HIV? How do you perceive your risk for HIV or other STDs? If you tested positive for HIV what would you do?
What’s not in dispute is that more testing would be a good idea. The CDC reports that about 25% of people with HIV nationwide don’t know they have it. Each year nearly 1,000 New Yorkers find out they are HIV-positive only once they have AIDS—meaning that they may have carried the disease for years and passed it along during that time. During one weekend this summer, HEAT tested 346 people and found 10% of them positive—a huge number compared with the rate of infection in the general population, which is well under 1%. The status quo is not working: new infections nationwide have hovered steadily around 40,000 per year since 1991.
Quick and easy testing exists, as do the drugs to keep HIV from becoming AIDS. New York City, which is home to one-sixth of the nation’s AIDS cases, has one of the country’s most generous benefits packages for HIV-positive patients. The package includes free antiretroviral drugs and medical care, access to housing and rent subsidies, and disability income. Quick and easy testing creates the opportunity for quick and easy treatment, proponents of eliminating counseling say.
But this isn’t the whole picture. According to the ACLU, 600,000 New Yorkers are eligible for government-funded health insurance but are not enrolled, suggesting that people who have access to care don’t take advantage of it. The groups that are less likely to have regular, open access to health care are also those at highest risk—new infections are most common among the poor, minorities and immigrants.
This may be the biggest problem with the CDC plan: it would snag people who came into contact with the health system for reasons other than HIV, but it would do little to find those who don’t come in at all. “It’s not like they’re going out and bringing people in,” says Richard Andrias, an associate justice of the New York Supreme Court and immediate past chair of the American Bar Association’s AIDS Coordinating Committee. “It’s not like a mass inoculation.”
Does anyone know you came to this clinic today?
An evolution in technology has not necessarily meant an evolution in attitude. For many, the debate around testing and counseling turns on whether the disease still carries stigma with it. Misinformation, suspicion and bias also persist.
A national survey by the Kaiser Family Foundation in May showed a surprising number of people still had misconceptions about HIV. Thirty-seven percent of those asked thought that it could be spread by kissing; 22% thought the same about sharing a drinking glass.
“AIDS continues to be intricately tied to community, to social behaviors, to stigma and discrimination that’s still very real, that still exists,” says Joe Amon, director of the HIV/AIDS program at Human Rights Watch. “It’s easy to say not enough people are getting tested, so let’s get aggressive about testing people. But the goal should be: let’s figure out why [people don’t get tested] and overcome those constraints.”
Backers of the plan say that making the test routine will make the disease seem more normal and treatable. But activists say that puts the cart before the horse. “We can’t just eliminate stigma by saying ‘this test eliminates stigma,’” says Sean Barry, director of prevention policy at the national Community HIV/AIDS Mobilization Project (CHAMP).
The American Bar Association has been trying to make the case for testing that includes legal and medical counseling and a separate consent form for an HIV test. Leaving patients without an understanding of their legal rights could send them blindly into a world of discrimination that includes job loss and eviction, the group says. “While the CDC may prove successful in de-stigmatizing the HIV testing process, that doesn’t mean that the stigma of a positive result will be removed,” says Michael Pates, the director of the ABA’s AIDS project.
Who do you talk to when stressed out or sad? How are you dealing with the knowledge that you are HIV-positive? Do you have a physician you see regularly?
Whether the test comes back positive or negative, pre-test counselors use the encounter to promote safe sex and HIV education. Otherwise those who test negative, they say, can leave with a false sense of safety. The CDC guidelines point out that “testing might present an ideal opportunity to provide or arrange for prevention counseling to assist with behavior changes that can reduce risks for acquiring HIV infection.” But the recommendation for changing testing rules contains no broader effort at prevention—no new condoms or needle exchange, for example. “While expediting testing is a good thing if done right, it can’t come at the expense of prevention programs for people who are HIV-negative,” says CHAMP’s Barry.
For activists and AIDS health care workers, testing in a vacuum does little good. “Unless there is meaningful follow up for people who test HIV-positive, unless there is documented and verified care for people who test positive, knowing your status is just a small part of that puzzle,” says Drew De Los Reyes, assistant director of the Geffen Center, the HIV testing unit of New York’s Gay Men’s Health Crisis.
After 25 years of AIDS, frustration runs high that there remain so many obstacles to expanding treatment, prevention and care. There is a fatalistic sense that until a revolution—a vaccine, a cure—comes around, incremental progress is the best that can be done. But activists insist that in the meantime everyone deserves the gold standard of care—access not only to testing but to education, prevention, counseling and medicine.
“Testing is being presented as a one-size fits all solution,” says CHAMP’s Barry. “A test is only a test.”
Adam Graham-Silverman is a writer who lives in Brooklyn.