HIV prevention summit seeks new strategies
Changes in evaluation, reimbursement discussed
Hoping to refocus and re-energize the nation’s HIV prevention strategies, the Centers for Disease Control and Prevention (CDC) in Atlanta recently invited more than 125 HIV prevention experts for a two-day brainstorming session. The December meeting came at a time when public health is facing increased scrutiny over how well it is utilizing HIV prevention dollars.
Although no radical changes were recommended, the diverse group did produce a long wish list of recommendations that included:
- better reimbursement for HIV prevention services;
- less-restrictive funding;
- a more equitable evaluation process;
- increased research on behaviors for long-term survivors.
"Prevention works, but we know there are 40,000 new patients with HIV every year, so whatever we are doing collectively, it is not enough," CDC director Julie Gerberding, MD, told participants of the HIV Prevention Summit.
The CDC is under increased pressure from Congress to show more accountability for the nearly $700 million earmarked for HIV prevention each year in the United States. Five ongoing government audits of prevention programs and services are expected to shed light on where changes are needed most.
"There are people who are, I think, rightly and respectfully — and sometimes not so respectfully — interested in knowing if those investments are having their maximum leverage. As the CDC director, I, too, care and want our HIV dollars spent as effectively as we can," Gerberding said.
While the recommendations carry no official weight, she said the ideas will be shared and discussed internally and intramurally at the CDC. "We will extract from that incubator some new ideas that can at least take us into a new framework for new prevention approaches while sustaining our commitment for the good work already going on," she explained.
In addition to developing new ideas, the meeting was seen as a critical step in mending relations in the prevention community, which has had to evolve as the epidemic shifts into new populations. Pressure also has come as the Bush administration adopts new approaches, such as funding abstinence-only education and faith-based organizations.
The Dec. 4-5 summit was charged to look at four areas: prevention for adolescents; knowledge of serostatus; measuring the effectiveness of HIV programs; and program gaps and research needs.
While the experts in each area agreed on the need for new strategies, there were strong disagreements on several issues, particularly abstinence-only education, HIV exceptionalism (the practice of treating HIV differently than other infectious diseases), and racial inequality in HIV leadership and funding. There was even disagreement over the CDC’s decision to post the summit’s findings on its web site.
The CDC’s new five-year HIV prevention strategy already is up and going, yet amid sexually transmitted disease outbreaks in men who have sex with men, controversial audits, and deep funding cuts at the state level, a sense of urgency permeated the discussions.
"Quite frankly, the strong message we are getting is people want to see declines in new infection and want to be able to say that declines are a result of programs in this area or that area," said Ron Valdeserri, MD, deputy director of the agency’s Center for HIV and STD Prevention. "In the past, the CDC has used process measures, and most publicly evaluated programs say that’s OK, but we are now hearing maybe that it is not OK."
Some experts cautioned that the summit presupposed that HIV prevention is in crisis and needs major changes. "We need to determine what success looks like and not be so hard on ourselves," said Ross Conner, PhD, associate professor of social ecology at the University of California at Irvine. "In prevention, we want 100%; and by setting such high standards, we set up ourselves to fail."
Others said science wasn’t the problem, but rather the intrusion of politics in determining the future of HIV-prevention programs. "It’s important we not throw away things that we have done successfully, and the answer may be that we need to do more of what we haven’t been doing as well as we needed to do," said Terje Anderson, executive director of the National Association of People Living With AIDS in Washington, DC. "And that includes targeted education that is not afraid to speak honestly about sex and drugs. The political debates over needle exchange is just one example of where politics has triumphed over science."
To put past successes into perspective, Anderson noted that 150,000 new infections were reported each year at the height of the epidemic, compared to 40,000 today. Where prevention has failed, he said, is in maintaining a sense of urgency among communities most affected. "We have to get back to a sense of community mobilization, and my fear is that we have allowed complacency to set in because we don’t care as much about the people who are getting infected today compared to 15 years ago."
Others agreed that a sense of urgency has been lost, particularly among youth who have not experienced the high mortality that faced an earlier generation. At the same time, choosing what prevention programs work has never been harder, and more guidance is needed on how to select from the "HIV-prevention supermarket."
"We see a decline in volunteers and in a willingness to jump in and make it your business if someone else in your community is taking risks," said Dan Wohlfeiler, chief of communications for the California Office of AIDS in Sacramento. "What that suggests is we need a lot more hard thinking about strategies we select."
Racism, both institutional and individual, was blamed as a barrier to better prevention successes among minorities, as were poverty and other social ills that have not been addressed. "We have to recognize there is a crisis within a crisis — there are youth who feel alienated from school, family, and society," said Barbara Welburn, executive director of the National Association of State Boards of Education in Alexandria, VA. "And we have to recognize there is a lack of positive role models for these individuals in the media and in politics."
One area where the CDC has made recent in-roads is working with faith-based organizations. Several examples were shared of how black churches are becoming key players in HIV-prevention efforts. In Columbus, OH, for example, the health department has been assisting the Westside Pastors’ Coalition with an eight-week training for pastors at the McCormick Theological Seminary.
This training, "Empowering Our Leaders to Do Good Work," targets pastors of African-American churches on the west and south sides of the city. Topics covered included education and prevention, sexuality, theology, and pastoral care. Ten pastors received certificates and two CEU credits for completing the eight-week course.
In the area of research, the summit spent a good deal of time discussing the Internet and how it offers both opportunities and challenges. One place to begin is by improving the CDC’s web site to make it more user-friendly, said Cynthia Gomez, PhD, co-director of the Center for AIDS Prevention Studies at the University of California San Francisco.
Another suggestion was to explore targeting on-line prevention messages based on information Internet users include in their profiles, as well as using the Internet for public service announcements.
An important area for more research is understanding behaviors of long-term survivors. Studies have shown, for example, that the ability to maintain safer sex practices diminishes after four years. Research is needed to find out why and what can be done to change this phenomenon.
Another recommendation was that funders of research should consider collaborative ways to provide money for services as well.
The summit group looking at youth strategies recommended HIV prevention professional development be taught not just to teachers but to all school personnel. It also said there must be an integration of multiple approaches in school-based programs.
"In every other discipline of education we advocate multiple approaches to instruction and this is no different," said Welburn. "And it must have comprehensive parental involvement and buy-in as it does with the community." Not only must HIV prevention education be comprehensive (abstinence, plus contraception and condom discussion for those who can’t abstain), it must be a sequential and interdisciplinary approach throughout the K-12 grades, she said.
The U.S. Department of Education must also step into the debate and be solicited as a partner in HIV prevention, Welburn said. "We need to make sure that what happens at the CDC is comparable to what happens at the Department of Education." Cultural differences also should be considered in program development, recognizing "this is not just about sex but, in some instances, about relationships and goes deeper than simply HIV prevention," she said.
In one of the more heated exchanges, summit participants debated the pros and cons of whether HIV should continue to be treated differently from other infectious diseases. Many participants argued that HIV exceptionalism had resulted in barriers to testing while others noted that HIV-positive people still are discriminated against.
"Anybody who thinks the stigma against people living with HIV is over is kidding themselves," Anderson said. He noted that people who are HIV-positive still cannot join the Army or the Peace Corp or immigrate to this country.
Hoping to refocus and re-energize the nations HIV prevention strategies, the Centers for Disease Control and Prevention (CDC) in Atlanta recently invited more than 125 HIV prevention experts for a two-day brainstorming session.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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