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For Cryin' Out Loud
by Mark Leydorf
As Congressional Republicans on the Hill slash government spending and attempt to reverse Obama’s health care reform, HIV advocates call cuts to AIDS funding and services “the real death panels.” Meanwhile, a scrappy group of activists from Ohio goes toe-to-toe with national lawmakers, including Ohio’s own John Boehner, the freshly minted Speaker of the U. S. House of Representatives. Ohio’s HIV-positive community’s fight to save the state’s ADAP program, and their lives, may well set the standard for battles to come nationwide.
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As Ohio goes, it is said, so goes the nation. Ohio has long signaled the outcome of U.S.
politics; it has only voted for the losing presidential candidate twice since 1896. The state has been on the forefront in other areas too: The Wright Brothers first experimented with flight at their Dayton bicycle shop. Akron was the birthplace of Alcoholics Anonymous and rubber tires. And Ohio was the first destination for many escaped slaves on the Underground Railroad. Today, it could serve as a bellweather for the AIDS funding crisis in America: As we go to press, Ohio has nearly a thousand HIV-positive people unable to access care.
Ohio is also the home of the new Speaker of the House of Representatives, John Boehner, a Republican. He’s known for breaking into tears publicly over issues like the war in Iraq, working-class heroes and the passing of the gavel, and now there is talk about why the GOP leader is not shedding tears for his constituents living with HIV.
|House of Representatives |
Speaker John Boehner
Budget cutters in Columbus are dismantling the state’s AIDS Drug Assistance Program (ADAP), an astoundingly hard-hearted and shortsighted decision that is repeating
itself in statehouses across the country from Michigan to Florida. In response, one Buckeye AIDS activist (and his army of recruits) is putting up quite a fight. Gil Kudrin’s day job is director of development for Nightsweats and T-Cells, a screenprint and design shop that makes and markets products with HIV/AIDS messages (the shop was cofounded by the writer Paul Monette, who lived with and chronicled AIDS until his death in 1995), where activism is part of the job description. Kudrin and a group of Ohio-based activists aim to ensure Boehner hears their cries loud and clear.
After Governor Ted Strickland (acting on advice from a secret “blue-ribbon panel”) lowered the ax on Ohio’s ADAP last year, Kudrin, 52, of Cleveland, helped start the Ohio ADAP Crisis Committee. The group traveled the state organizing town halls, launched a Facebook page (Ohio AIDS ADAP Crisis) and mounted a huge grassroots letter-and-phone campaign to save the ADAP funds.
It worked. On August 26, 2010, a Statewide Call to Action Day, “the governor received nearly 500 calls. The next week he shored up the program with $12.8 million from new Medicaid money from Washington,” Kudrin says proudly. When asked why he decided to mobilize, he says, “I must do my part. I’ve seen the movie [of what happens when people with HIV don’t get care]—I know how it ends!”
Indeed he does. He dates his life with HIV to 1978, long before ACT UP, GRID or even President Ronald Reagan. “I met a man I fell in love with the second time I went to a gay bar,” he says. “He died in 1994.” Kudrin didn’t receive an AIDS diagnosis until May 1995, though his first CD4 count, in 1987, was 230. Since then, thanks to HIV drugs, his CD4 count has climbed above 1,100. “But I have paid a heavy price,” he says. Taking meds has given him osteoporosis (three spine procedures in the past two years have helped with the pain), facial wasting from lipoatrophy, and macular degeneration. But he is grateful: “I know I got the meds in the nick of time.”
However, as a man living with HIV in Ohio, he may be running out of luck. Despite the temporary fix of former Governor Strickland’s emergency funds, Ohio’s ADAP is an endangered program. On July 1, 2010, the state’s Department of Health announced a plan to shrink Ohio’s ADAP by redefining eligibility criteria taking into account “a combination of both financial and medical need,” according to its press release. “The controlling factor will be based on the results of medical tests,” the release stated, “to provide services to the most vulnerable clients.”
The financial requirement for ADAP qualification was altered to exclude anyone whose income exceeds 300 percent of the federal poverty level—about $32,000 a year—instead of the previous 500 percent, or about $54,000 yearly. Applicants who might be financially eligible but who “do not meet medical eligibility criteria”—who are not sick enough—“will be placed on a waiting list.” In addition, medications for cardiac conditions, diabetes, depression, acid reflux and diarrhea, among other conditions, were removed from Ohio’s ADAP formulary.
Never mind that many of these conditions may be brought on or exacerbated by HIV and the drugs. The state’s health department helpfully promised that its staff would work “as closely as possible with case managers and clients to help those affected in identifying other resources, including patient assistance programs.”
Furthermore, current ADAP recipients affected by the financial eligibility changes would be “notified and given the opportunity to provide updated financial documents within 30 days.” But for those desperate for meds, more paperwork might not be what the doctor ordered.
“Right now the state of Ohio’s party line is that no one is going without their meds,”
Kudrin says. “How can they assure us of that? Three hundred fifty-seven people were no longer eligible for the ADAP program after the July 2010 cuts. There are now around an additional 380 on our waiting list. How are they keeping track of these more than 700 people living with HIV/AIDS?” He notes with some bitterness that no state employee has lost coverage despite the state’s difficult fiscal situation.
Considering the magnitude of Ohio’s ADAP funding crisis, some cuts were inevitable. Barbara M. Gripshover, MD, associate professor of medicine at Case Western
Reserve University and director of the John T. Carey Special Immunology Unit at University Hospitals of Cleveland, says many of her colleagues believe trimming the formulary was a good cost-containment strategy. “Most of those medicines have generic versions available and can be obtained for $4 or less at many pharmacies locally,” she says. “It cost Ohio’s ADAP more than that to ship them. But unfortunately [cutting the formulary] does not save enough.”
The biggest savings will come from the state’s new “medical criteria,” which in 2011 could eliminate an additional 861 people from Ohio’s ADAP. “Only the sickest individuals will still qualify for the program, [and meanwhile] those who are ineligible are not counted on the waiting lists,” Kudrin says. “Must be that new math.” The state may have tried to limit the political fallout from these cuts—“dead people never look good,” Kudrin observes—by disbanding its Ryan White Part B Consortia Planning Body (which disperses federal funds) at the time of the 2010 cuts. “No planning body, no dissent,” he says, adding, “If it’s [a question of accessing] your meds, this is a ‘death panel.’”
Drastic spending cuts are not unique to Ohio during the prolonged recession, but the state has been particularly draconian. Even the “briars” in Kentucky, butt of many an Ohioan joke, recently ended their waiting list for ADAP, if only for now. Especially in times of constrained resources, wait lists don’t make sense, advocates say. HIV practitioners and service providers have long known that a healthy patient costs less than a sick one. Yes, HIV drugs and other medications are expensive, but weighed against a decade of hospital stays, even 40 years of expensive prescriptions looks pretty cheap.
Kelly Gebo, MD, a researcher at Johns Hopkins University School of Medicine in Baltimore, found an economic correlation right down to CD4 cell counts. She and her team examined data from almost 15,000 HIV-positive adults who used high-volume HIV clinics in the United States in 2006, finding that the average annual cost of HIV care was $19,912. But for people with CD4s under 50, the average yearly cost was $40,678. In other words, the more compromised a person’s immune system, the more expensive the medical care.
Indeed, Gripshover has had to scramble to keep her patients on meds. “Our clinic cares for over 1,100 patients, and 38 were cut off when the eligibility criteria went from 500 percent to 300 percent of federal poverty level,” she says. “So far, we have been able to get meds for everyone who has been cut off ADAP for financial reasons. This has been due to the pharmaceutical companies stepping in—agreeing to cover anyone cut off.” Indeed, the best news for ADAP in 2011 came when the pharmaceutical companies that produce HIV meds agreed to help the ADAP crisis by lowering the cost of antiretroviral medications.
According to a year-end survey by the National Association of States and Territories AIDS Directors (NASTAD), “ADAP Crisis Task Force (ACTF) agreements with manufacturers of HIV drugs produced an estimated $259 million in savings for 2009, bringing the total savings since the task force’s inception
in 2003 to approximately $1.1 billion.” NASTAD has negotiated new ACTF agreements with Abbott Laboratories, Boehringer Ingelheim, Bristol-Myers Squibb, Gilead, Merck, Tibotec and ViiV Healthcare.
Gripshover notes that many patients in the upper end of the former financial range of Ohio’s ADAP have been all right, as they had private insurance and only used ADAP to cover their co-pays. But she worries about those who are on Medicare. “By law, [pharmaceutical companies] cannot cover their co-pays,” she says. Her clinic has also struggled to help those shunted to the new ADAP waiting list, hooking them up with pharma companies willing to help.
Whether drug companies will continue filling in where the government cannot pay remains to be seen. Gripshover worries that the situation will only worsen: “My biggest fear is Ohio’s ADAP may not have enough funds next year to cover those still on the program—even with the waiting list. We needed a one-time $12 million infusion this year just to stay solvent.”
As of December 2010, according to the NASTAD survey, there were 4,543 individuals on waiting lists to receive their HIV-related medications through ADAPs in nine states. Over half of these were in Florida; Ohio, with 347 wait-listed people, ranked fourth, between Louisiana and South Carolina. Meanwhile, a total of 23 states were implementing additional cost-cutting measures. NASTAD’s survey noted that ADAP enrollment had increased during 2010, as people lost jobs and health insurance. In December, a budgetary bill presented to Congress included an additional $60 million for ADAP nationwide, but the additional emergency funds did not materialize in the final version of the budget bill.
It is important to note that budgetary cuts in Ohio were not the product of some misguided Tea Party fiscal conservative; they were initiated by former Governor Strickland, a Democrat. Kudrin points out that states received no new money to shore up the ADAP system even as more HIV-positive people have come to need it. The logic strikes Kudrin as more than cruel. “[Our government] knows that keeping us healthy saves money,” he says, “they just don’t seem to give a fuck.”
It is likely the situation will worsen under the new Republican regime voters swept into office in November. Ohio’s new governor, John Kasich, is planning to cut Medicaid and other programs, which he has called “costly and ineffective,” and the new speaker of the Ohio House of Representatives, Bill Batchelder of Medina, has said Republicans may cut Medicaid eligibility by half. If that’s how Columbus plans to treat thousands of children and expecting mothers-—a constituency loved even by conservatives—what
do they have in store for people living with HIV?
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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!!