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Federal HIV Prevention Officials Speak Freely on Science, Marginalized Groups, and Funding

Julie Davids and David Munar's picture

This article is part of a special series this week focusing on HIV and AIDS in the United States.  RH Reality Check is partnering with CHAMP, the AIDS Foundation of Chicago, the HIV Prevention Justice Alliance, and other organizations to highlight issues on domestic HIV and AIDS policy during this week of the National HIV Prevention Conference in Atlanta, Georgia.  See the first piece in this series by Julie Davids and David Munar, The AIDS Crisis in the United States: Wlll the Obama Administration Meet the Challenge?  

ATLANTA - Speaking at the Obama Administration's first national HIV summit this week, top public health leaders and community activists agree that a paradigm shift in HIV prevention approaches is needed to make progress reducing HIV transmission in the U.S. 

According to advocates and other experts, the U.S. Centers for Disease Control and Prevention (CDC) must work with partners to develop and implement a strategic scale-up of comprehensive, combination HIV prevention strategies in order to achieve population-level decreases in HIV transmission.  The aims of a new approach must focus on averting as many HIV infections as possible. And it must expand successful interventions, invest in research and evaluation, and address social drivers such as lack of housing, mass imprisonment, poverty and marginalization. 

There were tantalizing hints at this week's conference that CDC may be ready to seek significant changes in federal prevention policy and programs, a shift that would require strong leadership to inspire political buy-in and increased resources.  Meanwhile, the new leadership at CDC faces steep challenges contending with an unprecedented economic crisis and competing national priorities that could jeopardize progress to slow the spread of HIV in the U.S.

In a seven-page booklet, distributed to all delegates attending the 2009 National HIV Prevention Conference, CDC asserts that "the science is clear: HIV prevention can and does save lives."  The document, entitled HIV Prevention in the United States: At a Critical Crossroads, makes the case for HIV prevention and articulates CDC's vision for leading the fight.

The arguments in the report are not entirely new.  As in past reports, CDC describes the dire nature of the epidemic in the United States and asserts CDC's vigilance tackling HIV incidence.

However, some participants at the conference noted new, refreshing areas of emphasis. CDC's report, which is going through the government process for online publication in the next few weeks, describes the hundreds of thousands of infections - and millions of health expenditures-averted to date.  The report describes the diverse and complex distribution of the epidemic and the many critical issues a more robust approach will need to include.

"People don't know what prevention is, what they're getting for their dollar, and why we need to do more," explained Terry Butler, a communications specialist with the CDC.  "While we know the value of prevention, there's a lot of misperception that prevention is not making a difference - the value of prevention in terms of lives and dollars saved."

AIDS advocates attending the conference observed that the new report comes on the heels of CDC's significant set-back in not securing one-time HIV and STD prevention funding in the economic recovery plan passed by Congress earlier this year.  Despite a proposal by the U.S. House of Representatives to invest $335 million in HIV and STD prevention work, conservative media pundits ridiculed the proposal and Senate members removed the allocation from the final spending package. 

Meanwhile, struggling state economies have triggered deep budget cuts for public health and HIV prevention programs across the country.  Several speakers at this four-day conference - presenting innovative HIV prevention activities - acknowledged fear their programs and jobs will not be sustained in the weeks and months ahead.

In his opening remarks, the new Division of HIV/AIDS Prevention (DHAP) Director Dr. Jonathan Mermin didn't shrink from describing the challenges posed by the nation's economic recession.  He described data compiled by the National Alliance of State and Territorial AIDS Directors (NASTAD) showing $84 million in HIV-related funding cuts among states surveyed.  A total off 55% of health departments reported funding reductions for HIV prevention.  Importantly, the survey conducted earlier this year does not even include the estimated $31 million in cuts resulting from California's state budget crisis.

CDC's new booklet details the widening funding gap at the federal level.  While CDC's HIV prevention budget has remained relatively stable since 2002, at $750 million annually, the purchasing power of the budget has declined by nearly 20 percent as a result of inflation.  Additionally, the report describes the CDC's professional assessment, calculated in 2008, that an additional $877 million (a greater than 100 percent increase) is needed annually to achieve a 50 percent reduction in yearly HIV infections in the U.S.

Mermin, a long-time AIDS clinician and CDC staffer who spent the length of the Bush Administration in Uganda and Kenya, has pledged to launch a new strategic planning process for CDC's Division of HIV/AIDS Prevention (DHAP) this fall as a component of the National HIV/AIDS Strategy.  He said it will draw upon the work of the External Peer Review of DHAP's programs and structure initiated this Spring.  Individuals involved with the external review say they already see evidence of their recommendations integrated into Mermin's remarks defending the cost-benefits of HIV preventions and justification for a larger investment in HIV prevention.

For example, Dr. Mermin expressed in his welcoming remarks the need to look at the "social context, including where people living, poverty, homophobia, race/ethnic bias, gender inequality, housing status, and HIV stigma," all factors believed to contribute to elevated risk for HIV acquisition.  He also called for a deeper investment in combination HIV prevention strategies to bridge different approaches "in multiple disciplines, including biomedical, behavioral, and community and structural interventions."

The HIV Prevention Justice Alliance (HIV PJA) secured a meeting with Dr. Mermin on the closing day of the conference to discuss ways to collaborate with CDC on efforts to mitigate HIV-related social determinants.  Among the HIV PJA's demands is CDC's commitment to develop a framework that begins to shift the focus of federal HIV prevention from predominantly individual, behavior-change models to interventions addressing the social and structural components fueling HIV transmission for entire groups of people. 

But beyond the mere complexity of such an ambitious undertaking, HIV PJA fears current economic conditions will undermine even core public health functions from being delivered, much less new forward-looking plans on root drivers of risk and HIV acquisition.

Graphically Simplifying a Complex Epidemic

HIV Prevention in the United States includes just two graphs, but they both speak volumes about how CDC may hope to inspire an increased investment and focus on HIV prevention. One charts the growing numbers of people living with HIV during a period of relatively stable HIV incidence (albeit at a rate that we learned a year ago is much higher than previously thought).

According to Rich Wolitski, Deputy Director of DHAP, the chart  "encapsulates a lot of challenges and tough decisions facing us," as it indicates that more HIV-positive people are in need of prevention resources even as the need for primary HIV prevention for those who are negative remains.

The second breaks down the 2006 incidence estimate by race/ethnicity, risk group and gender for the most affected subpopulations, and thus has distinct, descending bars for white men who have sex with men (MSM), Black MSM, Black heterosexual women, and so on. As explained by CDC spokesperson Terry Butler, this breakdown is part of an effort to "better communicate where we are in the epidemic. The data's been out there but it's clearer this way."

After years of euphemistic coding and strategic de-linking of information on different populations (for example, much talk of "African American and gay men" but little of "African American gay men"), these analyses are helpful tools even in clarifying the realities of the epidemic for conference attendees in the thick of prevention work. Throughout the conference, CDC has also been gathering feedback on a possible online tool that will also help a broad range of people visualize the incidence data broken down to this level of detail.

The Need for a Big, Good Idea

On Monday, HHS Secretary Kathleen Sebelius spoke boldly about the need for an emergency response to the epidemic:

    "In 2005, the CDC reported that in five major cities, almost half of all African-American gay men were HIV-positive... Think about that.  Imagine if it were half the straight white women in Atlanta.  Wouldn't we be calling this a national emergency?  Shouldn't we be?  That's how we at HHS are treating it.  So we're experimenting with innovative new ways to reach these groups - from a new online banner campaign that targets gay African-American men to partnering with groups like the Black Women's HIV/AIDS network."

While greeted by loud applause for her recognition of the racial and social injustices, the Secretary's examples of innovation under-emphasize the many activities at the federal, state, and local levels needed to heighten the response to HIV/AIDS among gay men of color.  Thankfully, in dozens of presentations and a CDC listening session on responding to HIV among Men who Have Sex with Men, participants described the need for programs and services designed to address the diversity of gay men at risk for HIV.  A speaker from Massachusetts, for example, described the disproportionate number of HIV-positive gay men who have spent time incarcerated. 

The discrepancy between the progressive analysis and rather standard actions (online banner ads? Partnering with community networks?") is reflective of some of the post-Bush CDC initiatives in which long-awaited core activities are perhaps over-lauded for lack of more radical approaches.

For example, conference participants spoke of CDC's new "Act against AIDS" advertising initiative as a decent start to spark a national dialogue about HIV/AIDS but cautioned, however, that the campaign cannot be viewed as taking the place of expanded HIV prevention services needed by people at risk and living with HIV or strategic structural interventions.

Treatment and prevention integration dominated many of the discussions this week with advocates and federal officials anticipating clinical trials will likely show that pre-exposure prophylaxis with HIV medications can effectively, though not completely, prevent HIV acquisition. However, the health education, medical and social systems implementation and financial challenges that would come with such a breakthrough would be formidable, and comprised the subject of a day-long meeting here on Sunday.

The concept of reduced "community viral load" as population-based HIV prevention (where greater numbers of HIV-positive people on treatment achieve undetectable viral load and are rendered significantly less infectious) is another bold idea gaining prominence.  Implementing greater treatment and prevention integration on a large scale, and in the face of significant budget reductions, remains a daunting task and will likely require greater coordination and collaboration between different government departments and agencies to, among other things, pool resources. 

Tough Choices, But New Opportunities?

The new booklet speaks quite plainly about the need to prioritize prevention work.

Advocates and Congress alike have criticized CDC officials for a lack of transparency and a reluctance or inability to provide clear and timely information about how they set priorities and spend the agency's funding.

In one of the final conference sessions, CDC unveiled a new resource allocations model that is being designed and tested to better determine program priorities. And the booklet makes it quite plain that "difficult choices" will have to be made, with "resources... directed to the populations at the highest risk and to the strategies that are the most cost-effective in reducing HIV transmission."

As explained by Wolitski, the "crossroads" referred to in the publication's title ("At a Critical Crossroads") alludes to the imperative to make difficult, strategic choices in an era of increased need and diminished resources.

"We're at a point of having to ask these questions. We are doing the external review, a strategic plan, there's the national HIV/AIDS strategy and health care reform. A lot of things today are changing. We have to look at the data and variables, and assess how what CDC does fits in a broader framework of providers, private insurance, medical care systems and so on. That's why the tough choices are now so salient."

New CDC Director Thomas Frieden, former commissioner of New York City's health department, is no stranger to embracing controversy in the face of what he feels is in the best interests of public health. Advocates note his past efforts supporting access to condoms, syringe exchange and - incurring the wrath of some advocates -- pushing for legislative changes to allow for HIV testing without written informed consent or counseling. But his presence at the podium was limited to an introduction of HHS Secretary Sebelius, far from showing his hand or sketching out a vision of change.

Last year, the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention held a consultation to consider the adoption of a social-determinants framework. While its Director, Dr. Kevin Fenton, has pushed for such a framework, it remains unclear whether new leadership at CDC will embrace a model that posits factors such as poverty, homophobia and mass imprisonment of African Americans and Latinos as likely drivers of the epidemic - or if they would actually move from a modeling to significant action.

It's widely speculated that any re-thinking of CDC policy must reduce dependence on pre-packaged "boxed interventions," which have failed to meet the nation's HIV prevention needs but been the mainstay of funded programs. Thus, some speculate that community-rooted prevention workers could be shunted aside rather than retrained under a new vision of comprehensive HIV prevention. Advocates have begun to speak out to demand that, if changes do come, those leading HIV prevention efforts in our communities will be given the opportunity for training and support to integrate and bolster new efforts, but this was not addressed in Atlanta this week.

The National AIDS Strategy to the Rescue?

Throughout the conference, there was much talk of the potential capacity of the National HIV/AIDS Strategy (NHAS) being coordinated by the White House Office of National AIDS Policy as a tool for turning tough choices into big, new ideas for prevention progress and inspiring re-investment in reducing incidence.

The placement of noted CDC researcher Greg Millett as a Senior Policy Advisory for the NHAS has been lauded as a step in the right direction. ONAP held a well-attended input session at the conference to launch development of the NHAS, with dozens of people testifying on their priorities for the plan, and Mr. Crowley spoke on a plenary session devoted to inter-governmental collaboration.

The NHAS is, in and of itself, a big, new idea in the domestic epidemic. The challenges of a truly implementable strategy are formidable, but fully consistent with the need for CDC to devise a more strategic and rigorous approach.  Only through bold, new leadership to chart a new, strategic path is there any chance to confront stubbornly persistent HIV incidence in our country.


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