Researchers: Too many are diagnosed late with AIDS
Other studies confirm problem
Too many Americans with HIV infection continue to be tested late in their disease, despite decades of HIV awareness, prevention, and testing campaigns and efforts.
Although data from the last few years are not yet available, information from the 1990s through 2005 suggest the problem continues nationwide.1-4 Without effective antiretroviral therapy, most people with HIV will progress to full-blown AIDS in approximately 10 years. Testing, diagnosis, and medical care soon after HIV infection and before developing AIDS can prevent unnecessary morbidity and mortality and reduce further HIV transmission, the Centers for Disease Control and Prevention (CDC) reports. People who receive an AIDS diagnosis concurrently or soon after receiving their initial HIV diagnosis (less than three years) represent missed opportunities for prevention and treatment.
African Americans and other minorities are diagnosed with HIV even later in their disease than most white people in the United States.
The CDC studied late HIV testing from 1996 to 2005 by examining data from 34 states. Although 2005 was the cutoff year for follow-up purposes, CDC investigators used data collected through June 2008, says Luke Shouse, MD, MPH, a medical officer in the CDC's Division of HIV/AIDS Prevention. "We looked at the initial diagnosis date and then when they were diagnosed with AIDS," he reports.
They found that 38.3% of patients had received an AIDS diagnosis within one year of their HIV diagnosis, and another 6.7% for a total of 45% had received an AIDS diagnosis within three years of their HIV diagnosis.1
The data collection period preceded the CDC's revised recommendations for HIV testing, which were released in 2006, Shouse notes. The CDC now recommends routine testing for ages 16 to 64 years.
"We're examining a period prior to the testing guidelines," Shouse says. "This might be a baseline, and we could repeat this in a couple of years and see if people appear to be getting tested earlier."
Another researcher who has examined late diagnosis of HIV infection at two urban hospitals compared data between timelines and found no progress in early HIV diagnoses through 2004.2
"It was surprising," says Muriel Jean-Jacques, MD, MA, an assistant professor in the department of medicine at Northwestern University in Chicago. "We expected that with increased awareness of HIV and AIDS and increased attention paid to early diagnosis that even in the absence of a formal early diagnosis program that early diagnoses would increase," Jean-Jacques says. "We were surprised to find the median CD4 cell count was so low and the viral load so high, and there was no change or improvement in that."
One reason for this finding could be that hospital culture continues to focus on acute HIV/AIDS problems, overlooking opportunities to test patients in inpatient or outpatient settings, Jean-Jacques suggests. "Providers have been taught that you think about HIV and AIDS and whether people have symptoms," she explains. "There's not a lot of emphasis on using the inpatient setting as an opportunity for preventive care because that's not generally what it's for."
CDC recommended strategies
Still, the CDC's 2006 recommendations are for routine HIV testing in all health care settings. The Revised Recommendations for HIV Testing of Adults, Adolescents, and Pregnant Women in Healthcare Settings suggests these strategies:
All health care patients, ages 13 to 64, should be notified that HIV testing will be performed unless they opt-out of the screening;
People who are at high risk for HIV infections should be tested annually;
Health care professionals should incorporate screening into their general medical care consent form and not require a written consent.
Jean-Jacques' research has shown that 12% of patients diagnosed late with HIV had been hospitalized at some point within the five years prior to their diagnosis. Because many of these patients had CD4 cell counts of less than 50 when they were diagnosed, it suggests they were HIV positive earlier but had not been screened for HIV. Also, 48% of the people with a late diagnosis had a prior outpatient visit within five years of their HIV diagnosis, Jean-Jacques says.
"This shows there are potential other encounters with the health care system where they could have been diagnosed," she adds.
There have been some efforts by health care organizations to incorporate the 2006 recommendations into practice, but it's difficult to say how widespread the practice has become, Jean-Jacques says. If insurance companies would require it or if HIV screening became a quality indicator for hospitals and health care providers, then it would become more routine, she notes. For example, providing pneumococcal vaccines to people over age 65 has been a publicly reported goal and benchmark, and that's led to a greater rate of vaccination, Jean-Jacques says. If someone reported a measure of the proportion of a health care organization's patients who had been screened or offered testing for HIV, then this practice would improve, she adds.
The CDC study found that older people, heterosexual men, injection drug users, and minorities tended to have higher rates of late HIV diagnosis.1 Shouse says, "Whites were the least likely group to have an AIDS diagnosis at three years."
The CDC data and analysis didn't address why people were being diagnosed late, although stigma likely plays a role, Shouse says. "I do think the 2006 recommendations for all adults to be tested routinely as part of their health care is an important recommendation, and I think it might have an impact on stigma," he adds. "It might reduce the stigma and make testing more accessible to more people."
Heterosexual men might have been diagnosed later because they don't feel like they're at risk for HIV, Shouse says. "Some of the reasons people get tested or not tested depend on their perception of risk," he adds.
Jean-Jacques has found in her medical practice that people will often turn down the offer of an HIV test, saying they aren't sure whether they could deal with it or handle a positive finding. "Or people will say, 'I don't think I'm at risk for that,'" she adds. "Then when you do a sexual history, you find out they're having unprotected intercourse, but they don't see themselves as at risk."
Once health care organizations adopt the opt-out HIV screening approach, it likely will help to reduce HIV stigma, Jean-Jacques notes. "Personally, I like to ask people if they'd like an HIV test at a separate time from when I ask about their sexual history because I don't want them to think I'm judging them," she adds. "I try to ask about the HIV test when I ask about their having a mammogram or having their cholesterol checked or having a flu vaccine."
When clinicians ask patients about the HIV test in the context of obtaining their sexual history, it might make patients defensive.
Another strategy to increase HIV testing acceptance would be to provide more oral testing so people don't have to have their blood drawn for an HIV test if they are not already having their blood drawn for something else, Jean-Jacques suggests. Some people will need more frequent HIV tests because of their risk factors, but if the nation's health care policy becomes to routinely test everyone from 16 to 64, then the test needs to be taken out of the context of risk assessment, she adds.
References
1. Late HIV testing 34 states, 1996-2005. MMWR. 2009; 58:661-665.
2. Jean-Jacques M, Walensky RP, Aaronson WH, et al. AIDS Care. 2008; 20:977-983.
3. Grigoryan A, Hall HI, Durant T, et al. Late HIV diagnosis and determinants of progression to AIDS or death after HIV diagnosis among injection drug users, 33 U.S. states, 1996-2004. PloS One 2009; 4:e4445:1-6.
4. Duffus WA, Weis K, Kettinger L, et al. Risk-based HIV testing in South Carolina health care settings failed to identify the majority of infected individuals. AIDS Patient Care STDS 2009; 23:339-345.
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