Some groups question lack of CDC focus on prevention

Main issue: Is policy ahead of science and funding?

While most AIDS activists and scientists agree that it’s a good idea to target more prevention programs at people who already are HIV-positive, some question whether the new push for HIV testing and the prevention-for-positives initiative is the right strategy at a time when other prevention dollars are drying up.

While the Centers for Disease Control and Prevention (CDC) recently has provided guidance for grant applications that will emphasize testing, counseling, and prevention for positives, some say the new initiative comes at the expense of other prevention programs since there has been no increase in prevention funding.

President George W. Bush proposed an HIV prevention and surveillance budget for FY 2004 that is $9.3 million less than the $699.6 million appropriated in FY 2003. (See NORA FY 2004 appropriations list.)

"One of the concerns that has been in the forefront since the new CDC initiative was announced was: How indeed will the federal government be able to pay for new programs as well as maintain existing programs that are so critical to prevention across a diverse group of populations?" says Gene Copello, PhD, executive director of the AIDS Institute in Tampa, FL. "While there appears to be some new or reassigned funding for the initiative, it is not clear to me how the CDC will be able to maintain financially the new initiative as well as the existing programs."

If what has happened in some states is any example, the answer is the new initiative will replace at least some existing programs.

"Massachusetts is in a bit of a fiscal crunch and has had to cut back tremendously in funding for HIV, across the board, in the last couple of years," explains Louise Rice, director of prevention for AIDS Action Massachusetts in Boston.

With funding cutbacks of nearly one-third for HIV programs, the prevention work affected includes programs targeting youths, HIV prevention in schools, and general prevention messages for young people, she says. "We haven’t seen a state-sponsored widespread HIV-prevention campaign for several years. We see small campaigns, targeting this group or that group, but trying to get the word out about how HIV and AIDS still are issues; and there are risks that kids take — it just hasn’t happened in recent years."

AIDS Action Massachusetts used to run a hotline that was staffed by teen-agers for teen-agers. Trained youth answered questions about HIV and sexual risk taking, and they even spoke in schools about HIV and AIDS. But that program had to fold due to a lack of funding, she says.

Some say that this is exactly the sort of general community prevention program that the CDC is trying to steer away from.

"In the past, there has been sort of a tradition in some prevention organizations to look to large gatherings as places where they call people to be brought in for different kinds of services," says Ron Silverio, president and chief executive officer of AIDS Community Services of Western New York Inc. in Buffalo. "In state grants that we’ve seen over the last couple of years, there has been a winnowing down from general education to much more targeted, small group intensive stuff, or one-on-one work that results in behavioral analysis, not necessarily behavioral change."

Another potential problem with having community-based organizations (CBOs) and states switch their priorities to prevention for positives is that there are few scientifically proven prevention programs that focus exclusively on HIV-positive individuals.

In the mid-1990s, the Center for AIDS Prevention Studies (CAPS) at the University of California, San Francisco was one of the first organizations nationwide to study prevention for positives, says Cynthia Gomez, PhD, co-director of CAPS. The prevention-for-positives research that is under way and others that have been completed at CAPS have not yet reached the point where they could serve as a model for CBOs and states, she says. There only appears to be one prevention-for-positives study completed nationally that could be replicated, and it’s a support-group model, Gomez explains. "This speaks to the fact that scientifically it still is premature for us to provide local organizations with scientifically proven intervention."

At the August 2003 national prevention conference, the CDC and the National Institutes of Health (NIH) brought together the top scientists working in the field of prevention for HIV-positives to ask where the body of research stands, Gomez notes. "It became clear that compared with other areas of prevention research, we’re at a very early stage in this research." AIDS researchers and others are concerned about this lack of proven interventions for positives, especially since the CDC has required that organizations only use interventions that have been scientifically proven, she adds.

"We can’t tell people what the best interventions are, and that’s a dilemma if the funding requires them to use interventions that have been tested," Gomez stresses. "Most agencies will have very limited options."

The lack of additional funding for the new initiative continues to worry AIDS groups that see the increased focus on testing and prevention for positives as only half of the big picture. The other half is getting the people who test positive into treatment, and again, the president’s budget proposes inadequate funding for AIDS Drug Assistance Programs (ADAPs), says Bill Arnold, ADAP director in Washington, DC. ADAP needs more than $200 million to solve its problems with waiting lists, capped enrollments, etc., he points out.

More than a dozen states continue to have serious problems, and it’s possible that California will join them this year with waiting lists. Gov. Arnold Schwarzenegger has proposed a new budget that would cut 2% from HIV/AIDS prevention and treatment programs, as well as cap enrollment for ADAP.

States also worry about the impact of a large influx of newly identified HIV patients on the ADAP rolls. For instance, Florida has one of the largest counseling and testing programs nationwide, and the state has increased its number of tests significantly in recent years, giving 300,000 HIV tests in 2003, compared with 270,000 in 2001.

However, it’s success in testing and identifying HIV-positive people also can be a source of concern for state health officials.

"I’ve testified and made the argument in Congress and at presidential AIDS committees that if we do our job well and bring new people into the system, then unfortunately, a group of them will be indigent and have no other place to go but the ADAP program," says Tom Liberti, chief of the bureau of HIV/AIDS for the Florida Department of Health in Tallahassee. "That’s why it’s frustrating for many organizations and groups — they know what I’m saying," he asserts. "Yet the level of increase in ADAP funding really has not kept up with increased need."

AIDS Action of Washington, DC, is among a group of organizations that continues to seek increases in AIDS funding, based on what grass-roots HIV organizations see as the need, says Jessica Tytel, governmental affairs associate. "What people are interested in doing is expanding existing programs, expanding capacity; and people are concerned they may not have the resources. One of the priorities of this administration is faith-based initiatives and bringing new partners to the table; and a lot of people are interested in working with these groups, but it takes time and resources that the current funding can’t provide."

CBOs have other concerns about the CDC’s recent prevention grant announcements, as well.

"It’s a huge program announcement to directly fund CBOs to do HIV prevention, and over half the funds will be going toward prevention for positives, but also most of the funding heavily emphasizes testing and finding people who are positive and getting them into care," Rice explains.

The first question the CDC now wants to know about high-risk people is whether they’ve been tested for HIV, she adds.

"That’s a little disturbing," Rice says. "That might work well in a community where people aren’t exposed to daily risk, but when you have communities where people are being exposed to risk daily — then getting tested every day is not the intervention you need." Any person who has a significant risk of HIV infection needs prevention messages that are sustained, personalized, and culturally appropriate, she notes.

"The CDC understands some of this, but it’s not where the majority of the funding is going." Instead, CBOs that receive the new grants will be forced to find at-risk people, test them, test their partners, and document all of their efforts to do so, Rice says.

Documentation is a big part of the new initiative, and it will require many CBOs to hire additional staff, she predicts.

The Program Evaluation Monitoring System (PEMS) asks for prevention interventions to gather race, ethnicity, and age data, as well as information on people’s condom use, testing history, and how they were referred for testing, Rice explains. "It also asks us to report how many times they had unprotected vaginal sex in the last six months." This collection of personal data also will have to be done in a way that protects confidentiality and privacy, she adds.

The data will be used to evaluate programs and establish baselines. For example, a CBO that recorded making an average of five outreach contacts to get a person into testing would have to set a goal for the second year to make an average of four outreach contacts, Rice says. "Every program that applies for this type of funding will have to have a full-time data manager. This is one of the more nightmarish aspects of the program."

This type of data analysis will tax the resources at most CBOs, Copello says. "A concern is whether the cost will cut into the amount of dollars they need to provide the services. I understand why the CDC wants that information, but the administrative burden for producing that data may be a problem for CBOs."

The CDC’s attention on prevention for HIV-positive individuals is an affirmative step that may remind clinicians to talk with their HIV patients about prevention and risk activities, Gomez points out. For instance, one study of HIV-infected men who have sex with men found that only one in four men had ever had a conversation with their physician about prevention, she says. "People felt that somehow when you seroconverted, you would be an expert on prevention."

The CDC’s procedural guidance for strategies on implementing prevention programs suggests that while prevention-for-positives research is under way, organizations could adapt and tailor the successful programs that exist for new populations. The guidance uses the Sisters Informing Sisters about Topics on AIDS (SISTA) intervention as an example of a program that addresses gender and ethnic pride for African-American women, but that could be adapted for Hispanic women and then retested.

The CDC has modeled or sponsored a series of prevention strategies that could be used for HIV-positive groups, as well as for high-risk groups, says Silverio, president and chief executive officer of the AIDS Community Services of Western New York, which administers the SISTA intervention.

"It seems to me it’s not a bad idea to offer models that have been proven to be successful in a variety of settings and to say to people that these are models based on good science," he says.

Since the new initiative has very specific requirements for CBOs to receive CDC funding to provide testing, counseling, and prevention for positives, some AIDS service directors say the most effective strategy might be to link their organization to other organizations and focus on their strengths.

Stop AIDS in San Francisco launched a prevention-for-positives program four years ago. So far, it’s been successful in bringing HIV-positive men into prevention treatment conversations about how to keep themselves and their partners healthy, says Darlene Weide, MPH, MSW, executive director. Stop AIDS will continue to focus on its strength of prevention programs, while leaving the CDC’s testing component for other organizations, she adds.

"If we get funded by the CDC, we will be able to continue to serve as a bookmark for testing.

"Hopefully, we’ll get funded and will be partnered with testing sites across the city." Stop AIDS could be a link for testing sites that need to refer people to prevention programs, Weide adds.

Similar collaboration may occur elsewhere.

"I do know that there are some groups trying to form coalitions around the country in applying for these funds," Copello says. "Basically, they’re looking at each other’s experience and expertise and are pulling that together." But this isn’t the best response to an epidemic that appears to be increasing, he says. "It’s a good concept, and coalitions are an effective way of doing these programs; but they still need to have adequate funds."