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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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comments 1 - 15 (of 29 total)
Sean, batesville, 2011-03-15 01:37:16
I live in rural arkansas. Just recently the Arkansas Department of Health decided I no longer qualify for ADAP. No warning, no letter, zilch. I called to refill my meds and was told I had been dropped. Nothing has changed with my financials. I am just as poor as I have ever been. DHS told me they do not know why I was dropped. But they would be glad to place me on their waiting list. For the interin file for LIS. This is happening to others here. People are going without meds. Death squad.
Joni, , 2011-03-11 21:29:28
I'm appalled by posters who say "anyone who disagrees with me should be booted out." How undemocratic. I'm a taxpayer and I and millions of Americans are paying for research and development of AIDS drugs when AIDS affects less than 1 percent of the population. I AM part of this conversation because my money is. As for "activism," collecting more taxes is NOT the answer. Gay men have to step up to the plate and remind people what this virus really looks like. Where are YOU???
Andrew, Sydney, Australia, 2011-03-04 23:53:57
As an HIV positive man I thank my lucky stars I live in Australia. We have govt run healthcare which I am absolutely happy to pay for with my taxes. My regular HIV management via a clinic is free, the government pays A$4000 a year for any dental work I need and my meds cost me around A$90 a month subsidised by the federal government. When I read about situations like this my heart goes out to all of you in the US.
dacook, Asheville, 2011-03-02 07:53:42
Iwas afraid the new congress would limit access to hiv meds, after all we are disposible in their eyes. I hope Mr Boener does the right thing, but I don't have much faith that the GOP gives a hoot about what happens to us. It's despicable !!
ethanwilson, Nashville, 2011-03-02 05:36:15
This article horrifies me. Seriously. And, no, i don't think people suffering from hiv/aids is getting special treatment.Where did this idea come from?, the conspiracy theorists? Tell that to those who cannot get their meds, tell that to the people who are sick and dying from aids right now. That is just rude and is lazy thinking.I am afraid that Republicans still believe that Aids is a "gay" disease, quite frankly. If you want to jump on a bandwagon of anger, dear readers, jump on that one.
naturejockk, covington, 2011-03-01 13:00:32
Oh grow a pair won't you. I have been a POZ since 88.
How long have some of you and
us, been getting stuff
for free and using the crap
out of the system?
How long did you think HIV
and POZ people were going to
be treated so F.ing special?
You don't see cancer families screaming FOUL. or other dominate illness in the country getting programs mfor anything the way HIV and POZ people have.
I started planning when I discovered my lover gave this to me.
Stop pissing money away on
pozncguy, Durham, NC, 2011-03-01 09:39:12
Ohio is NOT the only ADAP suffering during this economic crisis. I was turned down in NC last year (2010). I hope that the legislators and/or the individuals that that (supposedly) assist those that require medications to exist sleep well at night with our tainted blood on their hands.
ltsurvivor, San Diego, 2011-03-01 02:26:14
One must really ask, what is the point of this article? The bias is astounding. The party responsible for the cuts in Ohio are a Democratic Governor and his Democrat controlled state legislature (the cuts took place before the elections gave the house to the GOP). Neither Speaker Boehner, nor Republicans had absolutely ANYTHING to do with the cuts in Ohio, and yet the article (and magazine) headlines his picture and asks him why??? Seriously??? As an LTS I resent being used as a political puppet
Bob, Davenport, FL, 2011-02-28 13:32:17
Why is Joni even on this site in the first place?
Gregg, Columbus, 2011-02-27 12:01:48
"Joni", I was infected back in the early 1980's. Before they discovered it was a virus that caused it, in 1985. So, how exactly am I lacking in "personal responsibility"? Am I supposed to be psychic, and able to protect myself from things that are unknown?
Are you actively protecting yourself right now from (insert yet-to-be-discovered-disease name here), or are you slacking off today?
You make no sense, you only hate, Dear....
poz83diag92alive2011, Boston, 2011-02-24 08:54:40
Joni, welcome to the HIV haters board-not all of us R gay men and to imply _anyone_ gets sick, unable to work for "welfare" which is money to stay alive not waste is disgusting should probably passed the moderator, but reminds us what we are up against. Congrats on your luck as a hetero non iv user, wonder how many times Joni had unprotected sex but was not exposed that she dodged a bullet.. Your "I have got mine and damn all you losers" mentality sign of tea party times, karma Jo-words matter!
Joni, , 2011-02-23 16:31:32
As a taxpayer, I agree with Boehner. Gay men need to step up and take personal responsibility with their own health and exposure to the HIV virus. I've had ENOUGH of welfare recipients.
Jeff, Brooklyn, NY, 2011-02-21 23:32:26
The much touted and feared death panels have arrived. I cannot fathom anyone making the decision to deny life sustaining meds for one person let alone 1,000. Perhaps some of our decision makers need a course in HIV 101. Or maybe they just have their heads in the sand. When I told a family member in Ohio about the ADAP cutbacks and that the cut recipients will die without their meds, I was met with silence. Silence=Death.
Samuel Croft, Washington DC, 2011-02-17 16:20:34
Mr.Bonehead, Could you afford meds that cost several thousand dollars a month so that you can live. I am beginning the think that you and the rest of your ARMY are of the NAZI way of thinking. You want to cut programs that keep people alive, fed and warm. You really will pay for this one day and even if I have to go the hell I hope that I can watch you burn!
Andy, St. Petersburg, 2011-02-15 18:10:28
comments 1 - 15 (of 29 total)
Formerly a resident of Cleveland, until 4 years ago. I am floored by this news. I hope these people are diging their own political grave. They would much rather give money to illegal immigrants and other rediculous programs as well as paying 1 trillion dollars a month for a needless and failed war overseas than keep a few million people with HIV alive. Not to mention there is already a cure and not one of the politicians are even mentioning it. What we have here is a Machiavellian Oligarchy!!