Many Americans With HIV Don't Know They Have It The Centers for Disease Control and Prevention estimates that more than 20 percent of people in the U.S. who are infected with HIV aren't aware they have it. The CDC would like to see routine HIV tests done unless a patient refuses.

Many Americans With HIV Don't Know They Have It

Many Americans With HIV Don't Know They Have It

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Lindsay Mangum/NPR
A pie chart of HIV prevalence in the US by race/ethnicity
Lindsay Mangum/NPR

By The Numbers

With more than 20 percent of HIV-infected people in the U.S. unaware of their status, the CDC is pushing to make HIV testing a routine part of medical visits. The following data are CDC estimates for 2006.

- 21 percent of HIV-infected people don't know they have the disease.


- 38 percent of HIV-infected people in the U.S. are diagnosed late — within a year of developing AIDS.


- Between 2003 and 2006, HIV prevalence increased by 11 percent, to approximately 1.1 million people.

AIDS experts and federal health officials are frustrated by the failure to reach what they consider an achievable goal: identifying the hundreds of thousands of Americans who are infected with HIV but don't know it.

"More than 20 percent of people with HIV — more than 200,000 people — are unaware they're infected," says Kenneth Mayer of Brown University.

That's slightly better than the 25 percent "unaware" rate of 2005. But most Americans have never been tested for HIV, the virus that causes AIDS. The proportion of those who have been tested has stalled for years at around 40 percent.

Experts thought HIV testing would be much more common by now. Two years ago, the Centers for Disease Control and Prevention launched a drive to test all willing Americans between the ages of 13 and 64. The CDC would like to see HIV tests done routinely in medical practice unless a patient refuses.

Many Unaware Of Risk

The new HIV testing strategy replaces an approach that targeted those in danger of infection due to risky behaviors such as unprotected sex and intravenous drug use.

"Many infected people are unaware of their risk because their own behaviors are not particularly high risk," Mayer says. "So 'I'm not at risk' doesn't work."

Mayer cites the example of a woman in a monogamous relationship who's unaware her partner is infected; he also may not know he's HIV-positive.

One result is that people regularly show up in U.S. emergency rooms with severe immune suppression due to HIV — and often even advanced cases of AIDS, with pneumonia and brain infections — who never had an HIV test. That means years of missed opportunities to detect their infection.

"It happens all the time," says Rochelle Walensky, an AIDS specialist at Brigham and Women's and Massachusetts General Hospitals in Boston. "People are still presenting with end-stage disease."

Testing For HIV Not Routine

Only three in every 1,000 emergency room patients are being tested. "If a patient comes in with a tumor, they're obviously tested for cancer," says Veronica Miller, executive director of the Forum for Collaborative HIV Research. "HIV is the only serious illness so drastically underdiagnosed and undertreated in this country."

The evidence goes beyond anecdotal. Mayer and others presented a study last week at a Washington meeting that drew on data from eight health plans covering nearly 8 million people.

The data showed that of more than 10,000 people diagnosed with AIDS-defining illnesses — a sign of advanced HIV infection — only 5 percent had received an HIV test in the previous five months.

Such cases are "very painful for those of us that are in the field," says John Bartlett, an AIDS expert at Johns Hopkins Medical School who co-chaired last week's meeting with Mayer.

"I mean, we see people who come in and die. And you say, 'How many times were these people in the emergency room?' " Bartlett says.

"And when you go back, it's an average of something like five times in the last three years. It's really sad."

Early Diagnosis Can Prolong Lives

One recent study suggests that people with HIV live longer and do much better if they get antiviral drugs early in their infection, long before they show any symptoms or they have signs of severe immune deficiency.

Bartlett says one reason people aren't diagnosed earlier is that some states have laws requiring patients to sign special consent forms before they get an HIV test.

"Massachusetts, New York, Pennsylvania, Michigan, Connecticut ... there's a bunch of states that still make you jump over a bunch of hurdles that are just going to intimidate people from getting the test," Bartlett says. "We've gotta get past that."

Many states have repealed laws that require written consent. But there's resistance to doing that everywhere.

Denise McWilliams of the AIDS Action Committee of Massachusetts says the laws help newly diagnosed patients get what they need. She worries that if doctors and hospitals aren't required to get explicit written consent, some patients might get an HIV test without realizing it.

"What happens to the person who goes into the emergency room, doesn't know they're getting tested, gets tested, gets told they're positive and then is given a number to call the next morning?" McWilliams says. "Does that person have enough information to understand what happened and how to follow up on it? If you want to do this correctly, you've got to do it with resources. There's no way of doing this on the cheap."

Who Pays For HIV testing?

CDC officials acknowledge that economics is a big barrier to routine HIV testing. Even in states that allow tests after verbal consent, studies presented at the Washington meeting show opportunities to test for HIV are missed all the time — in emergency rooms, prisons and doctors' offices.

Part of the reason is that insurers often won't pay for HIV tests, which cost about $15 for a quick initial test and $80 to $100 for confirmatory tests and counseling when the quick test is positive.

McWilliams says low rates of HIV testing should be no surprise. "There's so much financial pressure on health providers to get patients in and out as quickly as possible," she says.

And, she adds, AIDS is hardly the only disease that the U.S. health system treats expensively rather than prevents cheaply.