Home Testing for HIV -- Reading the Lines in Do-It-Yourself Test

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Tony Martinez, 40, who works in New York's fashion district, took the home test as an "experiment." "If I didn't know I wasn't HIV positive, the test would be a different ballgame. I put myself back many years ago when I went to a clinic and took the test and was terrified. [The home test] was a lot of steps. I don't think I would have followed the directions in that [terrified] state. Am I really going to read the manual "What Your Results Mean" if the test is positive? It's like asking someone to read a drivers' ed manual after an accident."

In lieu of an in-person counselor, OraSure Technologies, which makes the OraQuick test that the FDA approved in July -- has set up a toll-free 24/7 customer support center with bilingual reps (English-Spanish). They're not certified counselors but have been trained to answer questions about HIV/AIDS, explain how the test works and what the results mean. They can also hook up callers to counseling and care, using the CDC National Prevention Information Network and the HIV Medicine Association, and can also transfer callers directly to a health care professional or agency, said Ron Ticho, senior vice president for corporate communications at OraSure.

"Our representatives go through more than 160 hours of training," Ticho said. Test kits come with instructions, warnings and precautions. Home-testers can find the same test information on OraSure's website, along with the same referral databases the call center uses.

But handing concerns about HIV over to a toll-free number has raised questions.

Much is made of the fact that without a counselor present, even with warnings on the box and inserts and brochures written for a seventh- to eighth-grade reading level, home-testers might not understand that, as with all HIV tests, regardless of the testing method, a positive result is preliminary and needs to be confirmed by a more specific test given at an HIV test site.

This is especially worrying with the home test because although the OraQuick test is the same rapid test that medical professionals have used at testing sites since 2004, it loses some of its accuracy in the hands of consumers: The percentage of results that will be accurately positive drops from 99.3 at a testing site to 92.9 when do-it yourselvers test themselves at home: This means that about one person in 12 could get a false negative.

Another stumbling block is the "window period" -- the time it takes, usually 12 weeks, for the body to develop the antibodies the test detects after exposure to HIV, giving some people a "false sense of safety" that they're HIV negative when they are in fact HIV positive and at their most contagious.

"That's always a huge, really important piece of counseling," said Barbara Adler, manager of HIV counseling and testing at the AIDS Alliance Project at the University of California at San Francisco, where the first HIV test was given 27 years ago.

But, Adler said, sometimes people who received a preliminary positive result didn't return for the results from the confirming test.

"So I don't know if sitting with another human being when they're getting a result is going to help that. I think the person who wants the physical presence of someone else probably won't do the home test.

"There's reasons, though, for wanting to test alone in your home. While the stigma is not like it was 30 years ago," Adler said, "it's still there and can be heavy. It's a disease around sex, or around needle use. Who wants to talk about those things? It's not like we're talking about cholesterol, or something you got because you ate certain foods or got too much sun."

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