PROJECT INFORM IN OTHER MEDIA ... 2008

What’s the plan?
Calling for a national AIDS strategy

Poz Magazine, by David Evans, October 2008

(mention of Project Inform in bold below)

Advocates are demanding that the presidential candidates commit to developing and implementing a national AIDS strategy next year. But their push alone might not be enough—the call has been sounded for all people affected by HIV to get involved and to make their voices heard.

You’d think most countries would have a clear set of written guidelines spelling out their national strategy to fight HIV infection and AIDS. Studies overwhelmingly demonstrate that without specific and realistic plans in place, businesses, organizations—even governments—struggle to achieve their goals. Canada has a national AIDS strategy, and so does Mexico.

The United States believes national AIDS strategies are so important that it requires countries it supports through the President’s Emergency Plan for AIDS Relief (PEPFAR) to have one in place. Based on that policy, most would assume that the United States has one too—but it doesn’t.

Marjorie Hill, PhD, executive director of New York City’s Gay Men’s Health Crisis (GMHC), says that the lack of a national AIDS strategy is responsible for a lot of the problems we face in this country, from HIV treatment waiting lists in some states to the rising rates of new infections among men who have sex with men and people of color. She objects to the “piecemeal” approach the United States has taken against HIV, with dozens of programs and agencies with various overlapping responsibilities, but no one entity directing (or orchestrating, facilitating, leading) the entire effort.

“That’s how we’ve been doing it for 27 years,” says Hill. “If we didn’t know better it would be different, but clearly because we require it of other countries that we give resources to, we know that this is an important piece of the equation to end the AIDS epidemic.”

This year, a number of activists from around the country have banded together to insist that the U.S. government, and specifically the presidential candidates, commit to developing a national AIDS strategy in 2009. Given the Centers for Disease Control and Prevention’s (CDC) announcement in early August that the number of new HIV infections occurring each year in the United States is actually 40 percent higher than was previously believed, most of the recent media attention has focused on a plan to address failures in HIV prevention and testing. But is there anything in a national AIDS strategy for people who are already infected with HIV?

Hill and her colleague Dana Van Gorder, executive director of the San Francisco AIDS advocacy group Project Inform, explain that a national AIDS strategy would likely benefit people living with HIV on a number of levels, including expanded availability of safe and affordable housing and improved access to health care. Van Gorder even goes a step further, saying that a national AIDS strategy could reinvigorate research toward a cure.

With the election less than two months away, Van Gorder urges people to get involved in the campaigns and to insist the candidates make their positions, plans and priorities about HIV clear. “Obviously,” he adds, “community support and mobilization for this is extremely important.”

With the stakes so high, the 2008 election could have a monumental impact on the lives of people with HIV.  Just as candidates for president are being asked to take a stand, so too are people with HIV to become involved and informed, and to make their voices heard this November 4. While HIV is not the only issue of concern this election year, advocates argue that if enough people demand that their candidate support the development of a national AIDS strategy, the result could be a significant change in the daily lives of people living with HIV.

Lacking Direction

“The United States has allowed its domestic AIDS epidemic to become a chronic public health problem characterized by persistent levels of new infection, needless mortality, insufficient access to care and disturbing racial disparities.” These words open a report published last year by Chris Collins of the Open Society Institute’s Public Health Program in New York City, detailing the pitfalls stemming from a nonexistent national AIDS strategy in the United States.

It’s not that gatherings of experts have failed to produce recommendations or priorities to improve the country’s domestic AIDS response. Indeed, a progress report from Bill Clinton’s Presidential Advisory Council on HIV/AIDS remarked that, “The AIDS crisis has generated more than its share of advisory committees. Far too often, the recommendations issued by these committees, commissions and councils have simply gone unheeded.”

Under President Clinton the United States had, for a brief moment, a national AIDS strategy in 1997. But according to Collins, “Many of the action steps were vague, with no office identified to carry them out, and no timelines set for completion of tasks.”

Van Gorder says that he and the others promoting a national AIDS strategy “don’t want it to just be a laundry list of the millions of things we could be doing to deal with the epidemic, but a very limited set of key strategies that are really needed to have a deep impact.”

One such example, writes Collins, is to determine “the top-five priorities to expand treatment coverage in a particular region; assign responsibilities among government and other actors to do specific things to address these priorities; and set a timeline for assessment of progress in each area by each actor.”

A major part of the strategy will be to distinguish the role of government, corporations and organizations in meeting the goals that are set. “AIDS is everyone’s responsibility, not just the government’s,” says Collins. “No national AIDS plan, even if vigorously implemented by federal, state and local authorities, can change the course of the epidemic unless the private sector, faith-based institutions, community-based organizations and others also participate.”

Getting everyone to contribute, say Van Gorder and Hill, demands commitment from the very top. Failure to do so will result in the same kinds of impasses that currently exist between different branches of government—such as the CDC, which recommends universal opt-out HIV testing in emergency rooms, and Medicaid, which does not reimburse doctors for such testing. “The hope is that the new president will commit to developing and implementing a national AIDS strategy early in the administration,” says Van Gorder.

Van Gorder also emphasizes that the person responsible for coordinating and implementing a national AIDS strategy should report directly to the president. “Because of the status of the president, and because the president controls purse strings and other things, the central organizing authority ought to come directly out of the White House,” he says.

Hill agrees and points out the shortcomings of an approach that only involves the health care community. “There is an assumption that people living with HIV will get all the information they need from their primary care physicians, and that’s just not true,” she says. “Whether it’s about safer sex, whether it’s about good nutrition, whether it’s about positive images in terms of fighting stigma—those social marketing messages have not been developed.”

Van Gorder also wants a national AIDS plan to go beyond testing and treatment. He says, “It’s hard to imagine that a meaningful strategy would not also identify ways in which we will increase support for research, in particular, to move from creating more pharmaceuticals that manage HIV to actually identifying a cure.”

Van Gorder and his fellow advocates aren’t making specific recommendations for what elements ought to be contained in a national AIDS strategy; they hope the president will pull together experts and stakeholders for that task. However, they do recommend how the process for developing and implementing a national AIDS strategy should look. For instance, if a strategy aims to reduce health care disparities by race, income and gender, they assert it will require increased funding for safe housing, enhanced mental health and substance abuse treatment, and other factors that improve a person’s physical well being aside from medical treatment.

Planning into Action

Though the activists calling for a national AIDS strategy make a compelling case, the national news media hasn’t paid a lot of attention so far, and only a few elected officials have expressed support. Two California Democratic congresswomen, Maxine Waters from Los Angeles and Barbara Lee from Oakland, have publicly called for a national AIDS strategy. During the primaries, both Barack Obama and Hillary Clinton ultimately expressed support for the concept of a national AIDS strategy.

More recently, in answer to questions from the Washington Blade—a gay and lesbian weekly newspaper in Washington, D.C.—Obama said, “If elected, during my first year in office, I will develop and implement a comprehensive national HIV/AIDS strategy that includes all federal agencies.”

Neither John McCain, nor any other Republican lawmaker, has made a similar commitment. “To my knowledge no one has come out and said, ‘I oppose a national AIDS strategy.’ But to coin an old phrase, silence does in fact equal death,” says Hill.

Van Gorder says his group hopes to get both the Obama and McCain campaigns to sit down with them and discuss the details of national AIDS strategy. In the meantime, the Campaign to End AIDS (C2EA) is organizing a series of rallies starting September 25 in Oxford, Mississippi, to draw attention to the need for a national AIDS strategy prior to the first presidential debate taking place September 26. The rally organizers argue that, the more attention placed on the need for a national AIDS strategy during the campaign, the more likely it is that the candidates will respond.

“Strategic planning will not provide a quick fix to the complex challenges involved in the U.S. AIDS epidemic, including deficiencies in the nation’s overall health care system and vulnerabilities exacerbated by longstanding social inequities,” writes Collins. “But a credible national planning process that sets priorities and targets and promotes accountability could have a valuable and lasting impact on America’s response to AIDS.”

Van Gorder concludes, “Obviously a national AIDS strategy won't solve all our problems, but it could, with sufficient support and public attention, make a real difference. Letting the candidates know how important this issue is to the country is the first step. Telling others about the candidate's positions on HIV and a national AIDS strategy is second. Ultimately, however, the fate of a national AIDS strategy may lie in the ballot boxes on November 4, and each of us has the power to make sure that our ballot is in one of those boxes.”