Docs Fail to Pick Up HIV Risks, and Patients Don't Tell Them
By Daniel J. DeNoon
WebMD Medical News
Reviewed by Aman Shah, MD
Aug. 16, 2001 (Atlanta) -- Four out of 10 Americans don't find out they have HIV until it's 10 years too late, a CDC study shows. And even when people know they are infected, they often don't get the counseling and treatment they need.
The findings, reported here at the CDC's National HIV Prevention Conference, show that in some ways Americans have not learned much during the 20 years of the AIDS epidemic.
"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. Unfortunately, many Americans with HIV are missing the opportunity for testing and support."
Campsmith and co-workers collected 18,850 interviews from people diagnosed with AIDS at 12 state health departments from 1990 through 1999. Four out of 10 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," says Campsmith. "Many patients had gone as long as a decade without appropriate healthcare."
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.
Like the CDC study, the Kaiser researchers found that 44% of the time, their members already had AIDS by the time they were diagnosed with HIV.
Michael Allerton, MS, is HIV operations policy coordinator for Kaiser Permanente.
"For the last 15 years, we have been driving home to our healthcare providers that if this and this is happening, you should suspect HIV," Allerton tells WebMD. "So with all this going on, I think what it shows is that, socially, we still have not gotten to the acceptance of discussing these behaviors in the medical situation."
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."
"There is a need for new approaches and strengthened commitment at the state, federal, and local levels," says Ronald O. Valdiserri, MD, MPH, deputy director of the CDC's HIV prevention center. "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."
Valdiserri says there are two reasons why people don't get HIV tests when they should. The first is that people think they might be infected and fear that they could not cope with knowing the truth. The second reason is that they deny they are at risk for HIV.
"What is not always very clear is how that perception may have changed as the benefits for individuals have changed -- now when treatment is available vs. 1985 when there was no treatment," he says. "Some segments of the public are aware of the benefits of early diagnosis. Individuals of lower socioeconomic status or those who don't have access to information about treatment in terms they can understand or those who mistrust the health care system don't see many benefits to early testing."