As the Food and Drug Administration decides whether to approve over-the-counter rapid HIV tests this year, consumers and experts weigh in on the benefits and potential risks of testing for the virus that causes AIDS at home.
One of the main concerns is the absence of support and counseling individuals receive in a clinical setting. Another is accuracy, since the proposed saliva-based test does not appear to be as reliable as the one that uses blood samples (the kind administered at most testing sites).
“Another concern is price, who may affect those who need testing the most,” said Jill Dispenza, director of HIV testing and prevention for the Center on Halsted. “And there’s questions regarding other people’s reactions to a positive result, which could potentially put someone in danger.”
While in-home HIV testing presents challenges, an FDA panel of experts unanimously agreed last week there are more benefits than disadvantages in expanding people’s access to the test.
“We absolutely support the initiative,” said Daliah Mehdi, chief clinical officer for the AIDS Foundation of Chicago. “We realize many people don’t have access to testing sites and home tests will fill that gap.”
But there are caveats, Mehdi said. “The AFC is looking for ways of making home tests connected to clinics and organizations that provide HIV-related services.”
Health officials have suggested the addition of 800 hotline numbers to in-home HIV tests intended for people who test positive, have follow-up questions, or are seeking counseling.
- FDA panel recommends the sale of quick in-home HIV tests; final decision to come later this year.
- Among the concerns is lack of pre-test and post-test counseling, false results and price.
- Officials hope home tests will increase HIV awareness; one in five people don’t know they carry the virus.
According to the Chicago Department of Public Health, of all people who received a positive result for HIV in the city in 2011, only 22 percent took the test out of personal initiative. The majority, or 31 percent, found out their status due to complications of an illness not HIV or STD-related.
“Anything we can do to increase the number of people getting tested is a valid effort,” Mehdi said.
So is it better to get tested in a clinical setting?
“Certainly,” Mehdi said. “Not everyone who receives a positive status is open to the idea of treatment. Some people don’t want to deal with the responsibilities of living with HIV.”
Convincing consumers who self-diagnose as positive at home to seek a confirmatory test and possible medical assistance seems to be a challenge for the in-home HIV testing concept, but others are even more worried about the lack of counseling in such occasions.
“Often times, it takes more than two hours to get people all the information they need,” Dispenza said, referring to people who seek HIV testing and counseling at the Center on Halsted. “It can be a very intense experience. It could change your life.”
Another concern for Dispenza is explaining the window period to consumers – the time it takes from exposure to HIV to the time the body starts producing HIV antibodies, from which the test can reliably detect the infection. On average, the window period lasts three to six months.
“Not understanding that process could lead to a false negative result,” she said.
City officials estimate 20 percent of the population living with HIV in the city is not aware of their status. Those individuals represent the most likely to spread the virus to others, since they’re not under any antiretroviral therapy, according to the Centers for Disease Control.
For Paul Johnson, a lawyer living in Uptown, a testing kit for home use would benefit those who don’t live in places with easy access to free testing sites. “I see if functioning very similarly to home pregnancy tests: very reliable, but not foolproof.”
Johnson said the test should be intended as a first step towards diagnosis, and the addition of a 800 number in the test instructions could help people find low-cost, follow-up testing options in their area, if well designed.
Dispenza, from Center on Halsted, said conversations with the makers of the OraQuick HIV test, the one recommended by the FDA panel, are under way.
“Perhaps a solution would be having the tests sold with a regional packaging that includes information to local resources, such as the hotline we manage at the Center.”
In the state of Illinois alone, there are more than 2,500 testing sites for HIV, but people living in rural areas tend to be tested less frequently.
“I can see the advantages of a home test for some people, but I’d still prefer to get tested in person with a health professional,” said Michael Barin, who works in advertising and lives in Lakeview.
Edward Kuras, prevention manager at Test Positive Aware Network, said while he sees benefits, he is concerned about the lack of pre-test and post-test counseling with in-home tests, especially for the youth.
“I worry about the teenagers who are being bullied and find out they’re HIV-positive … all alone,” Kuras said. “I worry about strict parents forcing their children to take the test and domestic violence and suicide attempts that may result from a positive result.”