Aug. 14, 2001 (Atlanta) -- Four out of 10 Americans learn they are HIV-positive when they are on the brink of full-blown AIDS, according to research presented here at the CDC's National HIV Prevention Conference.
In many cases that can mean a decade of missing out on treatment, say researchers, as well as a decade of not knowing they harbor a deadly virus that could be passed on to others.
"Too many people are not getting tested for HIV until late in their infection," says CDC researcher Michael Campsmith. "Finding out you are HIV infected is an important first step in getting treatment."
Campsmith and co-workers examined 18,850 interviews with people diagnosed with AIDS at 12 state health departments from 1990 through 1999. Forty percent of these people found out they had HIV infection within a year of being diagnosed with AIDS.
"Late testing is common in all groups regardless of race, sex, or HIV risk behavior," Campsmith says. "Many patients had gone as long as a decade without appropriate health care."
What is going on? Another study by managed care giant Kaiser Permanente offers a clue.
Researchers from the organization looked at 434 of their members from nine states diagnosed with HIV infection in 1998. They then reviewed their medical records for the previous five years to see if clues had been missed.
Similar to the CDC study, the Kaiser researchers found that 44% of the patients already had AIDS at the time were diagnosed with HIV.
"For the past 15 years we have been driving home to our [doctors] that if this and this [symptom is present] you should suspect HIV," says Michael Allerton, MS, HIV operations policy coordinator for Kaiser Permanente. Doctors are either missing the clues, he says, or unwilling to discuss the subject with their patients.
Allerton notes that nearly 20 years ago, Kaiser interviewed both doctors and patients immediately after they had completed a routine medical examination. They found that doctors didn't ask patients about their HIV risk behaviors -- and that patients didn't tell.
"Patients said, 'Oh, if I were at risk for that the doctor would have asked me," and the doctors said, 'Oh, if the patients were at risk for that they would have told me,'" Allerton says. "So each is expecting the other to bring up the subject. And unfortunately, 20 years into the AIDS epidemic we are seeing the same social barriers at work."
"We need to get those at highest risk tested, and we need to support infected people in getting counseling and treatment to prevent further transmission," says Ronald O. Valdiserri, MD, MPH, deputy director of the CDC's HIV prevention center.
Valdiserri says people delay HIV tests for two reasons: fear and denial. Some people think they might be infected with the AIDS virus, but fear they could not cope with knowing the truth. Others simply deny that they are at risk for HIV.
What's not clear, he says, is whether people are aware of the benefits of early HIV testing now that treatments are available.
"Some segments of the public are aware of the benefits of early diagnosis," he says, but many people aren't -- including people of lower socioeconomic status, people without access to information about treatment, and people who mistrust the healthcare system.