STEVE INSKEEP, host:
This next report is about a lack of crucial knowledge. Hundreds of thousands of people in this country are believed to be infected with HIV, and they do not know it. Health officials and AIDS experts are frustrated by their inability to identify them and get them treatment. Two years ago, the Centers for Disease Control and Prevention launched a drive to test all Americans between 13 and 64, but as NPR's Richard Knox reports, it's not happening.
RICHARD KNOX: Health worker Ana Novais(ph) ducks through the curtains to talk to an emergency room patient at Brigham and Women's Hospital in Boston.
Ms. ANA NOVAIS (Health Worker, Brigham and Women's Hospital): (Spanish spoken)
KNOX: The woman, who's in her 50s, is having abdominal pain. But she gives permission to be tested for HIV.
Ms. NOVIAS: (Spanish spoken)
Unidentified Woman: (Spanish spoken)
Ms. NOVIAS: (Spanish spoken)
KNOX: There's no reason to think this woman is infected with HIV, and that's the point, really. Before the CDC started its campaign to make HIV testing routine, doctors focused on people thought to be at risk. Rochelle Walensky of Harvard says that didn't work.
Ms. ROCHELLE WALENSKY (AIDS Specialist, Brigham and Women's Hospital, and Massachusetts General Hospital, Boston): It's thought that two-thirds of new infections are being transmitted by people who don't know they have HIV disease. And that between a third and a quarter of people who have HIV disease don't know it. And we can't treat those people and control this epidemic if we don't know who they are.
KNOX: Walensky said she regularly sees patients who have had HIV for a long time, but haven't been diagnosed.
Ms. WALENSKY: All the time, yeah. I mean, I am an infectious diseases consultant, so they call me when that happens. Yes, people are still presenting with in-stage disease.
KNOX: That means they've been infected for years without anybody suspecting. Years when they could have been taking drugs to extend their lives.
Dr. JOHN BARTLETT (AIDS Expert, Johns Hopkins Medical School): It's very painful for those of us that are in the field.
KNOX: Dr. John Bartlett at Johns Hopkins Medical School says there are many missed opportunities to test people for HIV.
Dr. BARTLETT: I mean, we see people that come in and die. And you say, well, how many times were these people in the emergency room? And when you go back it's an average of something like five in the last three years. It's really sad.
KNOX: A study presented last week at a meeting in Washington, shows that only five percent of patients with full-blown AIDS had gotten an HIV test in the previous five months. Another recent study suggests people with HIV live longer if they get antiviral drugs early in the infection, long before they show any symptoms. One reason people aren't diagnosed earlier is that some states require patients to sign special consent forms before they get an HIV test.
Dr. BARTLETT: Massachusetts, Pennsylvania, Michigan, Connecticut - there's a bunch of states that still make you jump over a bunch of hurdles that just are going to intimidate anybody getting this test, and we've got to get past that.
KNOX: But there's resistance to repealing laws that require written consent. Denise McWilliams of the AIDS Action Committee of Massachusetts says the laws help newly-diagnosed patients get what they need.
Ms DENISE MCWILLIAMS (AIDS Action Committee): 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 that they can call the next morning? You know, does that person have enough information to understand what just happened and how to follow up on it? If you want to do this correctly, you need to do it with resources. There's no way of doing this on the cheap.
KNOX: And that - the economics - is a bigger barrier to routine HIV testing than legal safeguards. Even in states that allow tests after verbal consent, opportunities to test for HIV are missed all the time - in emergency rooms, in prisons, in doctor's offices.
Ms. MCWILLIAMS: There is so much financial pressure on providers to get patients in and out as quickly as possible.
KNOX: Experts say another problem is that insurers often won't pay for routine HIV testing. But it costs only $12 to do a quick test for HIV. That's a lot less than it costs to treat advanced AIDS. Richard Knox, on NPR News.
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