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For Cryin' Out Loud
by Mark Leydorf
In the coming struggle, these state lawmakers may be less pivotal than another Ohioan, John Boehner, who, riding the great wave of voter dissatisfaction, just replaced Nancy Pelosi as Speaker of the House in Washington, DC. Brandon Macsata, CEO of the ADAP Advocacy Association, a frequent critic of Congressional Democrats,
believes that Boehner’s fiscal and social conservatism will take a back seat to his state’s HIV crisis. He believes Boehner will reckon with the growing number of
people on ADAP waiting lists—especially in his district.
Kudrin is not so sure. Republicans are masters at pitting constituencies against each other, he says. He predicts that Republicans in Columbus and DC may again try to divert stimulus money to cover ADAP and Medicaid shortfalls. (Last May, Senator Richard Burr, R–N.C., sponsored a bill to cover the ADAP shortfall with stimulus money. The bill has not been voted on.*) Using stimulus funds this way would be both shortsighted (the funds would run out, but the need would persist) and disruptive, setting various projects and groups against one another.
Mitch McConnell, the minority leader in the Senate from nearby Kentucky, famously said before the election that making Obama a one-term president would be the new Congress’s No. 1 goal, and even in the lame duck session, Republicans seemed devoted to handing him defeats at any cost, stalling the New START Treaty, killing the Dream Act and even quibbling about medical aid for 9/11 responders. One of Kasich’s first acts—before he even took office—was to cancel plans to build a high-speed train across the Buckeye State using stimulus money, despite the jobs the federal funds would create.
“Ohio’s ADAP clearly needs more money,” Gripshover says. “I fear [that the issue of] access to these lifesaving medications—which also decrease transmission and new infections by the way—is going to get caught on the chopping block.” She has a point: As Gebo’s research showed, people with failing immune systems are more expensive to care for. HIV-positive people not on meds (those stuck on waiting lists, perhaps?) have also been shown to be more infectious if they have higher viral loads. Withholding meds today, Gripshover points out, only means that potentially more people will need them tomorrow.
Kudrin fears that people with HIV will become pawns in the coming political games for party power. “I would ask [Boehner] to stop playing politics with our lives,” he says. “A small amount of money in the national budget will allow us to provide treatment to working poor Americans who need no more additional stress wondering where next month’s medicine will come from, or if they will be left by the side of the road by their government to die.” Kudrin adds, “The Ryan White CARE Act has traditionally received bipartisan support. Without [Senator] Ted Kennedy to back us up, I wonder if [we can hope for the same support for ADAP]. It may not happen without community outrage.”
THE POWER OF PASSION
Kudrin believes that community outrage is where it’s at—and all that’s left. Kudrin, who relies on his cocktail (comprised of five HIV drugs) and half a dozen other medications to survive, is the ideal poster child in the fight for ADAP. He remembers fighting off opportunistic infections all too well: “I have had pneumonia three times, a viral infection in my brain stem, shingles, repeated staph infections….”
Without ADAP coverage, he says, “all the people [including myself] who have stabilized their health with these medications will be cut off, left to their own devices or [hoping for] the generosity of the pharmaceutical industry…. [Many will] see a return to poor health, and many will die.” He has been fighting for his life—for most of his life. “Like many long-term survivors, I have been involved in AIDS activism for more than 25 years,” he says. “I was the spokesperson for ACT UP Cleveland for more than three years in the early 1990s. I had the best teachers imaginable—death and grief.”
Cleveland’s large activist community, especially among the clients and staff of the AIDS Taskforce of Greater Cleveland, provides backup. “We also have a host of the most talented infectious disease doctors, who encourage and support activism among their clients,” Kudrin says. The encouragement is needed, he says. “Too many people choose to die of embarrassment—not AIDS. The fear of AIDS stigma is so powerful that even when you take away their meds, they would rather die than say anything about it.” Because saying something about it requires saying that you have HIV. He wonders if the fear, despair or apathy are generational: “Too many younger people living with the virus don’t know the history of what we did in the early years. They don’t know how strong we can be. But they want to know,” he says, “that is the upside.”
Kudrin is keenly focused on Valentine’s Day 2011, the second Statewide Call to Action day. “We are hoping to generate 3,000 calls [that day] to the new governor, to both of our senators and [to Speaker Boehner].” Organizing for the big day is right on track,
including town hall meetings—“all planned except Toledo”—and outpourings of support from AIDS task forces and local public health officials statewide. Kudrin hopes activists nationwide will join in, not just for Ohio’s ADAP warriors, but for all Americans living with HIV: “Stand with us. Call Boehner’s office on February 14. Don’t accept this! These further cuts are not inevitable—do not go quietly to your deaths! There are people actively dismantling the work that we did in the 1980s and ‘90s. You must make your voice heard, or our community will relive the nightmare that us long-term survivors lived with.”
“We want each city to own their part of this,” he says. We are not telling [activists around the state] what to do, besides the Call to Action day. What we hear most is the willingness to participate in the movement—and many questions on activism, as most people have never participated in anything like [it before]. They are scared now though.” The most common question Kudrin gets is, “‘What do we do if this does not work?’ I tell them we have a plan B. That’s when we start the ACT UP shit again.”
After all, the most important skill for an activist is “a refusal to go home and wait to die, or to allow others to do the same,” he says. “Passion [for our survival] is the greatest asset we all have.”
Our hope is that Speaker Boehner—and his fellow members of Congress—will honor their constitutional duty to protect the lives and welfare of American citizens, including those with HIV.
*This article has been revised to reflect the following correction: In
the original article we mistakenly reported that this bill failed when
Democrats overwhelmingly voted nay. The bill has not been voted on.
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Search: Ohio, ADAP, Speaker of the House of Representatives, John Boehner, Medicaid, Gil Kudrin, waiting lists, advocacy, AIDS Taskforce of Greater Cleveland
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