New national HIV/AIDS strategy an example of homegrown activism

Together with AIDS activists across the nation, Boston advocates lobbied for new strategy that focuses on gay community.

President Barack Obama announced Tuesday, July 13 the implementation of a new national strategy to meet the needs of Americans living with HIV/AIDS. The plan is the United States' first-ever coordinated strategy to address the epidemic in its thirty years of known existence.

The groundbreaking national strategy -- influenced in part by recommendations from local HIV/AIDS activists -- will devote more resources to curtailing the spread of the disease among those most vulnerable to infection, including gay and bisexual men.

The first of its kind

The beginnings of the new strategy can be traced to July of 2007, when Rebecca Haag, President and CEO of the AIDS Action Committee of Massachusetts (AAC), met with the AIDS Action Council in Washington, D.C. "to get their advice on how to move forward the issue of HIV and AIDS in this country, and get it back on the agenda." After deciding to use the upcoming 2008 presidential election as an opportunity to educate candidates and bring HIV/AIDS back into media spotlight, Haag began working closely with activist Chris Collins, Vice President and Director of Public Policy at amfAR, the Foundation for AIDS Research.

Collins had authored a paper for the Open Society Institute that detailed the reasons why the United States was in such dire need of "a very specific kind of strategy with measurable outcomes, a timeline, and accountability," Haag said. Working with the Black AIDS Institute, the Gay Men's Health Crisis in New York, the San Francisco AIDS Foundation, and the AIDS Foundation of Chicago -- along with other groups -- Haag and Collins launched a comprehensive website describing the ideal national HIV/AIDS strategy, www.nationalaidsstrategy.org. "We created it here in Boston," Haag said.

Prior to the 2008 presidential election, the website garnered support from more than a thousand individuals, and more than 500 organizations. "We got every Democratic candidate to agree to call for a national AIDS strategy as President," Haag said. "We got it to the [Democratic National Convention] platform." The organization's magnum opus came when Republican presidential candidate John McCain joined Democrats in endorsing the need for a national HIV/AIDS strategy.

Haag, Collins, and their allies were able to secure $1.4 million of President Obama's anticipated budget from Congress, before he was elected. Obama then announced the development of the first national strategy addressing HIV/AIDS on July 13, three years after lobbying for a comprehensive plan began. "From the very beginning, a group of us just kept widening the circle and getting more and more people involved and more agencies involved," Haag said. "It resulted in a good strategy, for sure, but the more important part is it put HIV and AIDS back on the agenda during the political season, and I think it raised awareness that HIV and AIDS is still here, and still a problem."

"One size does not fit all"

One of the great things about the strategy, Haag said, is that it specifically targets communities and populations viewed to be more "at-risk" for infection. The drafters of the strategy "call out the fact that this disease has a disparate impact on gay men, on black women and the African American population generally," Haag said. "One size does not fit all, but rather, we need to target strategies that work in each of these different communities."

During remarks addressing the new strategy, President Barack Obama reiterated the obligations of the federal government to "transcend barriers of race or station or sexual orientation or faith or nationality" in its programs geared toward HIV/AIDS. He identified men who have sex with men (MSM) as a population that required increased scrutiny. "Gay and bisexual men make up a small percentage of the population, but over 50 percent of new infections," the President said.

Douglas Brooks, Vice President of Health Services at Boston's JRI Health, who was appointed to the Presidential Advisory Council on HIV/AIDS (PACHA) in February, believes that the new strategy is rooted in social justice. "It expressly addresses the most vulnerable populations, including gay, bisexual, and other men who have sex with men -- notably those men who are black and Latino and young," Brooks said, describing the strategy's tasks. "One of the things that our country has to do is focus on eliminating some of the structural barriers that either prevent people from getting tested in the first place, and/or prevent people from entering or staying in care once they do know their status. ...I'm really proud of the document's clear and upfront commitment to eliminating the barriers that lead to HIV."

Setting presidential precedent

President Obama on July 13 stated three goals encompassed by the new strategy: prevention of HIV/AIDS; treatment of HIV/AIDS; and "reducing health disparities" among those living with HIV/AIDS. Obama lauded the development of the new strategy, saying it exemplified the "devising of [an] approach not from the top down but from the bottom up," and closed his remarks by saying to the audience, "You're going to have a partner in me."

Local and national LGBT advocacy organizations praised Obama's implementation of the new HIV/AIDS strategy. "Today the Obama administration unveiled the first-ever plan for a coordinated strategy to address the HIV/AIDS epidemic in the United States," Rea Carey, Executive Director of the National Gay & Lesbian Task Force, said July 13. "Such a plan is long overdue, and implementation can't happen fast enough. On average someone contracts HIV in the U.S. every nine and a half minutes. Each day without action means lives are changed forever; lives that are disproportionately gay, bisexual, transgender, people of color, and the financially disadvantaged."

Brooks, who is HIV positive, joined in lauding Obama's actions on the strategy. "I think the Obama administration is very committed to it." At a July 13 meeting with the President, Brooks said that Obama "expressed in a very personal and sincere manner his commitment to the strategy and to the implementation of the strategy, and insuring that we can do the most that we can to ultimately stem the tide of new [HIV] infections."

A memo from the President directed toward the heads of executive departments and agencies detailed the implementation of the new plan. Obama called for "new levels of coordination, collaboration, and accountability" throughout the federal offices. The memo designated six "lead agencies" to spearhead the strategy's implementation: the Department of Health and Human Services; the Department of Justice; the Department of Labor; the Department of Housing and Urban Development; the Department of Veterans Affairs; and the Social Security Administration. The head of each lead agency must submit a report detailing the agency's plans for implementing the strategy to the Office of National AIDS Policy (ONAP) and the Office of Management and Budget (OMB) within the next 150 days.

In addition, the chair of the Equal Employment Opportunity Commission must submit to ONAP and OMB recommendations "for increasing employment opportunities for people living with HIV" as well as "a plan for addressing employment-related discrimination against people living with HIV."

Brooks applauded the simultaneous development of an implementation plan to accompany the strategy. "The White House didn't just put out a strategy, it also put out an implementation plan," he said. "I don't know if it's more important, but it's certainly equally important." The implementation plan applies timelines to the strategy's goals, and requires annual reports from the involved departments.

According to Haag, the new strategy is "very closely related to the President's initiative on health care reform," and indelibly linked to other health needs faced by people living with HIV/AIDS -- namely, the expansion of the AIDS Drug Assistance Program (ADAP) to make sure that the nation's HIV/AIDS patients receive life-saving medication and the continued political support of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, which extends support to low-income HIV/AIDS patients.

Brooks said that while federal programs still have work to do in preventing new infections, "I actually think our country has done a good job and has been really sensitive to the needs of people living with HIV." He echoed Haag's call for the expansion of ADAP resources, however. "There are people who are on waiting lists, and there's a real fear around people not being able to get their HIV medications."

The new national strategy represents a cooperative effort between several different federal departments, and has garnered significant media attention and political focus on the HIV/AIDS epidemic. The new plan was able to "raise an awareness politically and of the American people that we can actually do something about HIV and AIDS," Haag said. "We know what causes it, we know how it's transmitted, and we can stop it, if we set our minds to it and evaluate what we're doing." As a production of both advocacy organizations and government programs, Haag said that the plan is "a document that not only does the government own, but we as an HIV and AIDS community own."

Financial roadblocks loom ahead

Trepidations about the new strategy exist for the most part in the financial area. "It's coming at a very difficult financial time," Haag said. "We clearly, in the long run, need more resources as we identify more people living with the disease who haven't been tested." The question Haag and other activists are asking is, "Can we get the funding we need to do this?"

Haag hopes that the results from scheduled departmental reports will encourage more funding in the future. "By measuring outcomes and showing progress, we can demonstrate there is a return on investments in actually putting federal dollars into helping people living with HIV live healthy, productive lives," she said. "By getting measurements and outcomes out there, we'll be able to make our case for why this is so important."

Despite funding concerns, positive changes will be visible soon, Brooks said. "Throughout the country -- here in Massachusetts and in metro Boston as well -- we will begin to see some changes," he said. "Without additional funding -- which, quite frankly, I don't see a possibility for a tremendous amount coming down...what the strategy calls for is an allocation of funds to populations that are most in need. ...I think we could possibly see funding opportunities, research and practice opportunities [in Boston] to help us eliminate our infection rate."