Home HIV test raises red flags for some.

Byline: Susan Palmer The Register-Guard

HIV may not be the death sentence it once was, but people familiar with the disease are wary about making a drug test for it available over the counter.

U.S. Food and Drug Administration advisers on Thursday asked the company seeking to sell the nation's first at-home HIV test to show that consumers can perform it accurately and cope with the results if they receive a positive result.

The rapid test, OraQuick Advance, by OraSure Technologies, is in use by doctors and in medical clinics. It allows patients to learn in 20 minutes whether their blood has antibodies that confirm they've been exposed to the virus. The test involves a swab of fluids from the mouth put into a vial that screens for two HIV strains.

Concerns among those ranging from local HIV patients to the FDA panel considering the test is how some people might react without the availability of immediate counseling, including the possibility of suicides by those who receive a positive result and risky behavior by those who get a negative result.

"This over-the-counter thing, I think it's a horrible, horrible idea," said Thom Peters, a Eugene resident who learned two months ago that he was HIV-positive.

Peters is gay and a former intravenous drug user who has been clean for five months. He learned he carried the HIV antibodies during a blood screening at his doctor's office. If he hadn't been counseled and directed to seek support from the HIV Alliance, he suspects he'd be dead by now.

"I would have gone back out using," he said. "HIV is not something to be afraid of, but it's also something you don't want to find out on your own."

HIV Alliance staff members view the at-home test with mixed emotions, said Executive Director Diane Lang.

On one hand, you want to make it as easy as possible for people to learn their status. On the other hand, HIV does lead to AIDS, a disease that, left untreated, is deadly.

"What other fatal disease can you find out that you have at home?" Lang said. "If you know what the disease can do and have watched someone die, that would be a horrifying thing to discover by yourself."

With treatment, HIV has become a chronic, manageable condition in the United States, but not everyone knows that, she said.

And even those who do know are overwhelmed when they first learn they've tested positive.

Counselors who have to deliver the bad news say people are stunned by the diagnosis and often have a hard time taking in the information.

"People are in shock. Every person that I have told has been in shock," said Kelly Moore, counseling and testing director at the HIV Alliance. "I don't expect them to remember the information that they're first hearing, that this is not a death sentence."

Lane County's Public Health Services already uses the rapid test for those who are at high risk for contracting HIV - men who have sex with men and intravenous drug users. Their counselors make sure people receiving the diagnosis have friends or family to turn to for support, and they make arrangements for follow-up counseling, said Greg Eicher, an HIV prevention counselor.

"We have had people make suicidal expressions," upon learning they're HIV positive, Eicher said. Despite the fact that the rapid test has a 99 percent accuracy rate, those who get a positive result then receive a blood test, one whose results take several days to confirm.

"The next step is to link them with services," Eicher said. "People can be so blown away by emotions that they can hardly follow what you're telling them."

That was true for Christopher Gordon, who learned he was HIV-positive in May.

"I went into a state of shock. I was numb," said Gordon a 20-year-old Eugene resident who plans to attend the University of Oregon in January. His first thought: "Oh, my God. If I test positive, I'm going to kill myself."

The news was so overwhelming, he didn't pay attention to the information the counselor gave him. But later, he read the handouts he'd been given.

"I don't know if I would have been motivated to read the information if someone hadn't given it to me," he said. "That was something that was important, someone reassuring me that I could come back to this place where I wouldn't be looked at differently and I could get help."

Gordon worries that those who take the test at home would be less likely to follow up with the HIV Alliance. Worse, they might not tell sex partners about their diagnosis.

"Initially, I didn't want to tell anybody," Gordon said. Counselors at the HIV Alliance encourage patients to tell their partners and are legally obligated to offer to do it for them. With help, Gordon said he was able to tell his partners, who then also got tested.

He worries that such outreach efforts won't happen if people test themselves at home.

The HIV Alliance plans to start using the rapid test soon because the quick diagnosis solves a problem that has plagued the public health community, Lang said.

Nationally, 33 percent of those who come in to be tested don't return for their results. The HIV Alliance has a much higher return rate - 85 percent of those who come in for a test return for a diagnosis, a process that can take up to two weeks. The alliance has a higher return rate because it offers people a $10 financial incentive to come back.

A 20-minute wait for test results would mean that everyone tested would know their HIV status, Lang said. That's important when 75 percent of new HIV cases are transmitted by 27 percent of the people who don't yet know they're HIV-positive, she said.

"It's a good prevention tool to just have someone know their status. We're in favor of the rapid test and we want to do it at our agency," she said.

While Eicher worries about the emotional impact of the home test on people who are infected, he sees a potential benefit to the county's public health agency, which gets inundated with requests for testing from people who are at low risk for the disease, he said. Because they're unlikely to actually have the disease, a home test would ease their minds and reduce the pressure on the county, he said.

Some studies have shown that people wait months after receiving an initial diagnosis before seeking treatment.

"The caliber of counseling that people receive is really important," she said. "The longer you wait, the less treatment options you have."

It's unclear how soon the FDA panel considering the drug test will make a recommendation or when the FDA will make a final decision.

Paul Basken of Bloomberg News contributed to this report.