AIDS groups had a range of reactions to new guidelines from the federal Centers for Disease Control and Prevention (CDC) that support ending the requirement for written consent for HIV testing and the prevention counseling associated with such formal consent regulations, establishing “opt-out” programs that test everybody except those who refuse it, and accepting consent to medical care as “sufficient to encompass consent” for HIV testing.
“I do think that expanding the offer of testing is a good step,” said David Ernesto Munar, associate director for policy and communications at the AIDS Foundation of Chicago.
“We want people to accept testing. We want people who may have been exposed to HIV to find out.”
The guidelines, which are only recommendations, were released on September 21. The CDC suggested that all Americans between the ages of 13 and 64 get tested and those at higher risk of HIV infection get tested once a year.
Munar’s group was one of 33 AIDS, gay, and health groups that joined a statement that endorsed the “routine offer of HIV testing,” but raised serious doubts about other aspects of the guidelines.
Other signatories included The Foundation for AIDS Research (amfAR), the Community HIV/AIDS Mobilization Project (CHAMP), the Gay Men’s Health Crisis (GMHC), Housing Works, Lambda Legal, and the New York State Black Gay Network.
The Los Angeles-based AIDS Healthcare Foundation, the San Francisco AIDS Foundation, and the American Medical Association endorsed the guidelines while the National Association of People with AIDS and the American Academy of HIV Medicine expressed qualified support.
There are several rationales for the guidelines. The hope is that “opt-out” regimes and eliminating counseling and written consent, which some in public health including CDC now call “barriers” to testing, will result in more Americans learning their HIV status earlier.
Officials claim this will lead to declines in new infections because people who test positive change their behavior to protect their sex and needle-sharing partners. Some researchers dispute that claim. The CDC produced a 2005 analysis of 11 studies and data sets that showed such declines.
Dr. Walt Senterfitt, an epidemiologist, an author on the analysis, and the board chair of CHAMP, said that CDC was “overselling” the conclusions of the analysis.
“I don’t think that you can generalize our meta-analysis nearly as much as CDC is doing it,” he said. “I don’t believe you can generalize a reduction as wide or as great as those studies indicate.”
If implemented, the CDC’s testing regime would likely identify more infected people, Senterfitt said, but there are also populations, such as young people and those without health insurance, who would still be missed.
Health officials also hope that expanded testing will capture more people earlier in their disease progression. A CDC analysis of 2003 data from 35 jurisdictions with long-term HIV names reporting estimated that 39 percent of the 38,142 AIDS or HIV cases were late testers or people who received an AIDS diagnosis within one year of first testing positive. It typically takes eight to 10 years to go from HIV-positive to AIDS. Late testers often begin treatment much sicker and their prognosis is worse than those who test early.
For some activists, such as Munar, the CDC guidelines are part of an ongoing abandonment of HIV prevention.
“At this juncture in the epidemic we want to see more discussion about HIV not less,” he said. “To ask doctors not to have discussions with their patients just seems to be a disservice. I’m concerned that we’re giving up on HIV prevention.”
The linkage between counseling and testing was made in many states because often people get tested due to a recent unsafe sex or needle-sharing encounter. The test was viewed as an opportunity to discuss risk reduction strategies.
Advocates are also concerned that ending written consent will result in people being tested without their consent.
“It does open the door for widespread ethical abuses,” Munar said.