January / February 2012
by Regan Hofmann
Congresswoman Barbara Lee fearlessly leads the charge on Capitol Hill for people with HIV. Tens of millions of lives—including ours—depend on her ability to convince lawmakers to support the fight against AIDS. Having made an effective case for presidential leadership on the issue of ending AIDS, she now needs all the support she can get to rally the rest of Congress to champion the cause.
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I am walking, no, running beside U.S. Congresswoman Barbara Lee the morning after World AIDS Day—a day made historic this year in part because of her bold leadership on HIV/AIDS. She is easily out-striding me along the super-shined marble floors of the Rayburn House Office Building in Washington, DC. Next time we meet, I’ll know to wear sneakers. Lee moves like a hurricane making land.
Before one of our interviews begins, she bursts into the room surrounded by hovering staff, assesses the set-up, schedule and options and decides to move the interview and photo shoot to another location to eliminate wasted time and unnecessary steps between her appointments. We’re all running after her down the hall almost before we know what’s happened.
Lee’s urgency comes not from nervous energy, but rather from a laser-focused determination to help people in dire need. Whether fighting for impoverished, disenfranchised, jobless, homeless, undereducated Americans or people living with HIV/AIDS at home and around the world, Lee knows that the sand slides through the hourglass faster for some than for others. Her desire to make the world a safer, better place for those hanging on the edge of survival drives her nonstop race against time.
The Democratic congresswoman representing California’s Ninth District has a strong record of independent voting and progressive politics (she is the former cochair of the Progressive Caucus). And she knows how to seize the right moment to apply pressure to effect social change—especially on issues others would rather not face.
Our political system is based on the idea that the American people elect representatives to lobby for our needs in Washington. But it’s not always easy for those we send to our nation’s capital to remain independent and truly serve the needs of their constituents versus make decisions and cast votes in ways that serve the agendas of their most powerful and wealthiest donors.
A social worker by training, Lee sees her role simply; she is a warrior in Washington for one main reason: to serve and defend the most underserved and vulnerable people in the world.
Case in point: her dedication to the domestic and global HIV/AIDS community. Several weeks before President Barack Obama’s landmark speech on HIV/AIDS on December 1, Lee penned a letter to the president asking him to consider three key initiatives to help people with HIV. They were: (1) to announce a new goal of treating 6 million people with HIV by 2013 through the President’s Emergency Plan for AIDS Relief (PEPFAR)—a move that would bring the global total to about 8 million on treatment by 2013 and would require no additional funds short term, (2) to expand HIV prevention, care and treatment activities in U.S. jurisdictions that experience rising HIV incidence and growing wait lists for access to the AIDS Drug Assistance Program (ADAP), in advance of the Affordable Care Act provisions starting in 2014 and (3) to order a review of federal and state laws, policies, regulations and judicial proceedings involving criminal cases against people living with HIV/AIDS.
At a time when Obama was preparing to launch his next presidential campaign in the midst of low approval ratings and a struggling economy, inviting him to stand so publicly on the issue of HIV was a big ask. But Lee knew he’s long been supportive of people with the virus and that he personally wants the end of AIDS to be a legacy for his administration. So she did the asking. Her face looked illuminated from within as she sat several feet from the president listening as he acknowledged each of her requests in his speech. It was understandable. Not everyone gets to claim they directly helped save the lives of 2 million people (currently, about 4 million get HIV care via PEPFAR; through a strategic reallocation of funds within the proposed FY2012 budget, an additional 2 million would be connected to treatment by 2013). Lee’s career tally is far higher, but 2 million lives spared is certainly nothing to sneeze at.
After Obama’s speech, the stage and podium were rearranged for a panel discussion led by CNN’s Sanjay Gupta focused on how the world can begin to end AIDS. Participants included Lee, Bono, Muhtar Kent (chairman and CEO of Coca-Cola), Alicia Keys, Florence Ngobeni-Allen (an HIV educator and woman living with HIV), Patricia Nkansah-Asamoah, MD, (an HIV doctor in Ghana), Senator Marco Rubio (R–Fla.) and Kay Warren (founder of the HIV/AIDS Initiative at Saddleback Church). Joining via satellite were President George W. Bush, Tanzania’s President Jakaya Kikwete, President Clinton and Sir Elton John. The event was jointly hosted by ONE and (RED), Bono’s organizations, and in the audience were global AIDS leaders, including Anthony Fauci, MD, of the National Institutes of Health; Ambassador Eric Goosby of PEPFAR; Michel Kazatchkine, head of the Global Fund to Fight AIDS, Tuberculosis and Malaria; executive directors of organizations that support the fight against AIDS; activists; advocates; people living with HIV; other members of Congress; and members of the National Security Council and the administration. Plus, a live audience tuned in on the Web.
It was a watershed moment in the history of AIDS, and Lee made the most of it speaking candidly about some of the stickiest subjects associated with HIV. “African Americans make up 14 percent of the U.S. population,” she noted. “But they represent 44 percent of all new HIV infections in our country. This is unacceptable.” (One of Lee’s central objectives is putting the plight of Americans of color with HIV into the context of the global pandemic. Early in her years of activism, she invited Bono to Oakland to see how similar disinfranchised African Americans were to people in need in other nations. When he picked up that mantle, the NAACP noticed and gave him its prestigious Image award. “A very unusual thing for a white Irishman,” she laughed.)
On the panel, Lee highlighted the need to reduce stigma, and she suggested that political leaders come together and get publicly tested for HIV to show people it’s OK to do so. She also called out the long lines for HIV medications in states like California and Florida (and others) as being immoral and unethical. “We have to find a way to provide these medications very quickly,” she said.
In light of her point, President Clinton raised the issue of securing generic pricing for AIDS medications in the United States for those who could not afford the drugs otherwise. He suggested the government negotiate with the pharmaceutical drug companies to lower prices in the United States for the next two years, until the Affordable Care Act kicks in fully and there would be different mechanisms for paying for treatment for the nearly 850,000 Americans (and counting) who are not taking the pills—pills that double, by the way, as prevention because when an HIV-positive person adheres to an effective treatment regimen, the risk of transmitting the virus can be reduced by 96 percent.
Clinton asked Lee directly if she would command an initiative to explore generic pricing for HIV medications in America. He knows she is the woman to do it; they worked closely together when he was in the Oval Office. “You know we’re going to follow-up and find a way to do this,” she said. Thanking Lee for her leadership, Clinton said, “You were one of the very first people who understood what was at stake.”
Lee still does. She said, “I am humbled and excited that we’re here today. I hope everyone sees how Congress and political leaders have put aside their partisanship and different points of view to say we’re going to work to ensure we have an ends to AIDS. We’re at a critical moment when we need to recommit. We’re winning this war, but we still have a long way to go.”
Indeed, we find ourselves at a flummoxing crossroads. At the exact moment global health experts agree we can start turning the tide on AIDS, even stopping it altogether in the next decade or so with the right strategic investments, the global economic landscape looks gloomy.
Days before the president’s speech, the leadership of the Global Fund announced that due to a lack of funding, it could not fulfill its next round (Round 11) of grants—grants that would have covered 25 percent of the worldwide funding for HIV/AIDS. That means the pressure to solve the world’s AIDS problem falls, as it has done time and time again, almost entirely back into America’s lap. We can’t begin to end AIDS unless we get lots more people onto treatment. And we can’t do that unless we have continued support from Congress.
But while some might be daunted by the combination of congressional gridlock, economic strife, diminished federal budgets, lack of jobs, an impending election (which means, usually, caution on tackling issues that can prove counterproductive to re-election) and “Fortress America” thinking, Lee remains unswayable in her devotion to clear HIV off the planet—while keeping those living with the virus on it.
She understands well the confluence of scientific insight and momentum that has led everyone ranging from global AIDS experts to the mass media to America’s commander in chief to publicly state that we have in our possession the tools to start to end AIDS. And she’s bringing the hammer.
“Make no mistake,” Lee says. “We have the money. The world definitely has the money to end AIDS.”
As we go to press, it appears that Congress will approve a 4 percent increase for global relief funding—much of which will help people with HIV/AIDS. And the word in the beltway is that Lee’s ability to get 103 members of Congress to sign a letter in support of foreign aid played a pivotal role in the backroom appropriations negotiations that may have protected monies in the Fiscal Year 2012 Department of State, Foreign Operations, and Related Programs Appropriations bill—a bill that funds PEPFAR and U.S. contributions to the Global Fund.
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