Why People Still Won’t Get Tested for HIV

Whitney Hynes preps an AIDS rapid results test during the "Condom Nation" tour on Thursday March 15, 2012 in Dallas, Texas. The initiative, which also involves free screenings and education sessions, spans 20-states, during a six-month nationwide tour.

Whitney Hynes preps an AIDS rapid results test during the "Condom Nation" tour on Thursday March 15, 2012 in Dallas. The initiative, which also involves free screenings and education sessions, spans 20-states, during a six-month nationwide tour. (Amy Gutierrez/AP Images for AIDS Healthcare Foundation)

June 27, 2012
On July 10, FRONTLINE will air Endgame: AIDS in Black America, a groundbreaking two-hour exploration of one of the country’s most urgent, preventable health crises. Watch a preview above.

Three decades after the AIDS epidemic hit full-force, the United Nations says it’s possible to eradicate the disease by 2015 — in part by preventing new infections. 

That will remain a major challenge not just elsewhere in the world, but also in the U.S., where an estimated one in five people with HIV don’t know they’re infected.

Studies have shown that people who know their HIV status are less likely to engage in risky behaviors that could lead to infection, according to the Centers for Disease Control. If they know they’re positive, they’re more likely to get treatment and take steps to avoid passing on the disease to their partners.

The CDC has recommended since 2006 that health providers test patients for HIV/AIDS as part of routine physical exams for everyone between the ages of 13 and 64. The government designated today, June 27, as National HIV Testing Day.

But testing rates have remained flat — around 20 percent —  since 1997, according [pdf] to the Kaiser Family Foundation.

So why isn’t everyone getting tested on a regular basis?

Dr. Lisa Fitzpatrick, a medical epidemiologist who specializes in treating HIV/AIDS, recently researched the problem, and found that many health providers don’t ask whether patients want to be tested.

“I realized that the awareness is just so low among health-care providers,” she said. “They have so many other things on their radar.”

Many told her they don’t think their patients are HIV positive, Fitzpatrick said. Others expressed worry that they wouldn’t be reimbursed by insurance or that they feel uncomfortable telling someone that they have the disease.

Fitzpatrick said that she routinely screens her patients for HIV, along with other diseases. “I’m not singling people out, but I’m saying that it’s part of our standard practice. … You take away the stigma,” she said.

Not to screen is a liability for doctors, she adds.

But providers who don’t offer the tests are only part of the problem. Nearly 50 million people in the U.S. are uninsured, according [pdf] to the 2010 census, meaning that a large swath of the population doesn’t receive anything but emergency treatment.

Finally, HIV/AIDS still has a stigma, particularly among African-Americans, who have been hit disproportionately by the epidemic. “The black community understands that HIV/AIDS is a problem in our community, but not enough of us understand how big a problem it is,” Phill Wilson, the chief executive of the Black AIDS Institute told FRONTLINE. “Too many of us still believe it’s a problem somewhere else — among white gay men, in sub-Saharan Africa.”

Blacks have a higher rate of undiagnosed HIV infections compared to other groups, according to a February Black AIDS Institute report [pdf]. Although they make up less than 14 percent of the U.S. population, blacks make up 44 percent of all new infections, the report said.

“Often, the people most at risk are the people who are most afraid” of being tested, Wilson said.

One new possible solution to the testing problem is a home test, which would be the first test of its kind. OraQuick In-Home HIV Test, produced by OraSure Technologies, is an oral test that offers a result within 20 minutes. It’s currently under review by the Food and Drug Administration, so the company says it’s not yet clear when it might be able to put the product on the market.

Activists have criticized the test, arguing that people who test positive for HIV need immediate access to counseling and treatment. Testing at home doesn’t connect them to a doctor who can help, although the company says it will include a number for a 24-hour hotline with the test.

But so many people remain untested that this hardly matters now, Fitzpatrick said. Recently, she said, she has begun admitting people to the hospital with full-blown AIDS who hadn’t even known they were infected. She says she’s in favor of the home test if it helps some people.

“I’ve pretty much done a 180 on it,” she said. “I’d much prefer that people know than have no clue about their diagnosis. If we haven’t stepped up to the plate as health providers, we need all the help we can get.”

Update [July 3, 2012]: The FDA today approved the OraQuick In-Home HIV Test. “Knowing your status is an important factor in the effort to prevent the spread of HIV,” Karen Midthun, M.D., director of the FDA’s Center for Biologics Evaluation and Research, said in a press release. “The availability of a home-use HIV test kit provides another option for individuals to get tested so that they can seek medical care, if appropriate.”

Sarah Childress

Sarah Childress, Former Series Senior Editor, FRONTLINE

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