There’s a decided lack of energy on AIDS coming from the gay and lesbian community today
By Tom Sheridan
Posted: August 18, 2010
Tom Sheridan is president of the Sheridan Group, which serves public interest advocacy efforts and designs socially responsible public policy initiatives. His client portfolio includes Bono's ONE Campaign, One Voice Against Cancer, Catholic Charities USA, and the America Forward coalition, and several AIDS-related charities and causes.
Today marks two major events in this country's history. Twenty years ago, the Ryan White CARE Act became law. And one year ago, Sen. Edward Kennedy passed away, having seen the bill he championed save hundreds of thousands of lives.
In 1990, as I huddled with the senator and his staff to write the nation's first response to the HIV/AIDS epidemic, we were interrupted and told that Ryan White—the brave 19-year-old who challenged our presumptions and prejudices—was losing his battle with AIDS. Kennedy picked up the phone and asked Ryan's mother, Jeanne White, if it would be appropriate to name the bill for her dying son. I've always admired the grace and courage that enabled Mrs. White to see beyond her grief. Her support helped us pass a disaster assistance bill in response to an urgent national crisis.
We now have fewer deaths, more available drugs and treatments, more systems able to respond. But the initial response, repair, and recovery process has come to an end. Today's new HIV/AIDS challenges require the same kind of innovation and boldness that we, as a nation, demonstrated two decades ago. So, on this milestone anniversary, I'm compelled to offer this challenge: Let's honor Senator Kennedy and Ryan White by writing and passing the Ryan White CARE Act 2.0.
Ryan White was written when virtually no drug or pharmaceutical interventions were available, but drug access has nevertheless become the bill's primary focus. It was written for an epidemic that raged within the gay community, but HIV/AIDS is now a leading cause of death for African Americans, those with substance abuse issues, and for men who have sex with men but don't identify as gay. The bill couldn't mention education—in 1990, that was a political hot button. But half of today's new infections are among those under age 25 who clearly aren't getting enough HIV/AIDS education. And Ryan White never mentions preventive medicine, but huge strides have been made in that area. A new microbicide gel reduces a women's risk of infection by almost 40 percent. In five or 10 years, we'll probably have the equivalent of a "morning after pill" for HIV.
Clearly, it's time for an updated battle plan that is just as innovative as its predecessor. We need a bill that nationalizes the purchase of AIDS drugs similar to the Veterans Administration's approach, which could save 74 percent over open-market prices. With those savings, we could give greater numbers of Americans with HIV access to life-saving treatments. We need to merge care and prevention strategies so that the current wave of scientific discoveries has an express lane into the new at-risk communities. And we need to remove silos in the federal government that prevent agencies from coordinating care. The Centers for Disease Control, for example, could work much more closely with the Health Resources and Service Administration to develop innovative ideas for leveraging resources.
President Barack Obama's new plan essentially maintains the status quo, but doesn't bring forward any new ideas or offer much money. Twenty years ago, led by Senator Kennedy, our thinking was bolder and demanded more. Why not now?
Is part of the reason that we're just not holding the president's feet to the fire? There's a decided lack of energy on AIDS coming from the gay and lesbian community today, raising uncomfortable questions about who cares (and doesn't) about the new face of this disease. Why have no other groups stepped forward to address the new risks to their communities?
In 20 years things go stale, stakeholders become complacent; for-profit interests embed; innovation stops; creativity becomes lethargic. Edward Kennedy and Ryan White would demand that we honor the 20th anniversary of this bill and, indeed, their memory by committing ourselves to the Ryan White CARE Act 2.0. Let's get to it!
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