AIDS treatment providers draw battle lines over new proposal
By Jon Theiss
The Other Paper
Fifteen years ago, you couldn’t turn on a television without HIV/AIDS advocates like Madonna and Real World’s Pedro Zamora popping up to espouse the dangers of unprotected sex. Fast forward to 2012, and the epidemic seems like just one of many causes fighting for ever-dwindling philanthropic support.
Still, more than 1,000 new cases of HIV/AIDS are diagnosed every year in Ohio, and currently, more than 16,000 people live with the disease.
As the numbers rise, more people in need begin to fall through the cracks—most often, those who live at or near the poverty line.
Recognizing the shortcoming, the Ohio Department of Health attempted last fall to enact a new failsafe policy to ensure that the most needy would receive treatment first—if the state’s coffers ever ran dry—and as a result, found itself in the middle of a firestorm.
Some of the policy’s opponents have compared the decision to prioritize care to Sophie’s Choice—referencing the film about a mother who’s required to choose which child lives, or which dies, during the Holocaust.
According to the loudest advocates, it’s not the state’s job to decide.
That’s why, in November, William Booth, David Baker and Eddie Hamilton filed a complaint against the Ohio Department of Health (ODH) to prevent it from making changes to Ohio’s HIV Drug Assistance Program—changes that could have denied life-saving medications to some low-income, non-insured or underinsured HIV/AIDS patients. When Franklin County Court of Common Pleas Judge Timothy S. Horton issued an injunction to stop the ODH from making the rule change, advocates across the country breathed a sigh of relief.
“Victory! AIDS Patients Win Ohio Lawsuit Over Drug Access,” read a press release from the AIDS Healthcare Foundation, a Los Angeles-based organization that bills itself as the largest community-based HIV/AIDS medical provider in the nation.
However, victory lasted only a few months longer than a Kardashian marriage, and just last Thursday, the Department of Health re-filed its rules-change proposal. This time, they did it by the book.
“They tried to push it through without going through the proper channels (last time),” said Eddie Hamilton, one of the original plaintiffs. “Judging from that, we thought something was going on behind the scenes that they were trying to keep secret. Now they’re taking it back to the courts, and they said they’ve gone through the proper channels. But people have no idea what this is going to do to patients who need these drugs to live.”
It makes sense that Hamilton would want to keep drugs in the hands of low-income HIV/AIDS patients—he’s the director of the ADAP Educational Initiative in Columbus (ADAPs, or AIDS Drug Assistance Programs, are bodies that advocate on behalf of patients to ensure coverage).
But not everyone agrees with Hamilton that the Department of Health’s proposal is misguided. In fact Ohio’s biggest low-income HIV/AIDS treatment and testing organization—the AIDS Resource Center of Ohio (ARC)—supports ODH’s new rules. Some think ARC’s position is a slap in the face of advocates and patients and a reversal of what ARC purports to stand for—patient care.
The rule changes that ODH has proposed to the Drug Assistance Program aren’t necessarily rule changes—they’re key additions of just-in-case scenarios in the event that the department runs out of cash.
In short, it’s a rainy-day contingency plan that prioritizes care for the sickest and poorest patients in case of an economic emergency.
According to a draft of proposed ODH Rule 3701-44-03, if HIV/AIDS treatment monies fall to a critical level, the director would retain the ability to “Restrict, reduce or terminate” programs based on “insufficient funds,” or remove patients from coverage based on medical or financial factors.
The new policy does not require the director to give patients notice of any changes to their coverage.
Under the current system, patients only can qualify for coverage if they make less than $32,000 annually. The proposed rule could, in an economic emergency, change that threshold to about $22,000 per year.
The proposed system would place patients on what ODH refers to as a “triage system,” which would give first dibs on medication to pregnant women, women who had recently given birth, “persons…with HIV-associated nephropathy or HIV related dementia…a history of AIDS-defining illness…or a nadir CD4 count of… less than 14 percent,” according to the draft.
The proposal has put like-minded treatment providers at odds.
The ARC apparently is satisfied with the homework done by the Health Department in formulating its emergency legislation. “The proposed medical criteria were developed by the Ohio Ryan White Part B Advisory Board, including leading HIV clinicians, specialists and service providers from across the state…based on Health and Human Services Treatment Guidelines for HIV,” said a statement from ARC in support of the proposal.
But opponents such as the AIDS Healthcare Foundation (AHF), which is set to open a treatment center and testing site in the Short North later this year, say the policy contradicts the very reasons drug assistance programs were established in the first place.
“It flies in the face of national HIV strategy,” said Joseph Terrill, domestic advocacy manager for the AHF.
“In this system, you’re making people get sicker before they get medicine, which costs more money, and lives, in the long run.”
Hamilton said that the timing of the proposal is curious.
“At the end of 2010, Governor Strickland diverted $13 million from Medicare funds (to the Ohio HIV Drug Assistance Program) and brought the waiting list down from about 500 to zero. There was also an infusion of money from the federal government that brought the waiting list down. But now that there’s no one on the waiting list, they’re proposing a rule to prioritize, or ration care in our opinion, for those who need it? If there’s no problem, then why do we need this rule?”
Funding troubles could be lurking just around the corner, however.
“The infusion of cash from Strickland was a one-time gift, and part of that funding…is tied into the Affordable Care Act. If the Affordable Care Act (better known to most as ObamaCare) goes away, so does that money.”
ODH naysayers also counter that “rationing,” the drugs, or “prioritizing based on need,” could actually put another federal revenue stream—the Ryan White Grants—in jeopardy, based on a non-discrimination clause that states that “Allocation of these funds will be made in a fair, competitive and equitable manner.”
“If any state is abusing or not implementing the program by the bylaws, they jeopardize the money provided by the federal program,” said Terrill.
Hamilton agreed. “It’s illegal, it’s immoral and it’s a discriminatory practice,” he said.
According to the Federal Department of Human Resources, Ohio received $25,057,269 in Ryan White Part B funds last year, along with more than $1 million in Emergency ADAP funding.
Some accuse the ARC of playing politics; supporting the measure because of its dependence on Department of Health cash. ARC, which merged with the Columbus AIDS Task Force and the Ohio AIDS coalition, provides treatment and medication for nearly 2,500 low-income, uninsured or underinsured patients statewide.
“It’s ridiculous. When I saw (ARC’s) press release stating that they were in favor of the rule change, looking at it as a ‘tool in the toolbox’—a tool to limit access to meds? From an organization set up to contain or end the epidemic of people who are HIV positive? I found it appalling,” Terrill said.
Hamilton had a more inside-baseball outlook.
“ARC is on board, but they’re only doing it because they’re a sub-grantee of the state. That means behind the scenes they’re receiving a couple million dollars a year from the state. They can’t go against ODH and risk losing their money,” he said.
Peggy Anderson, chief operating officer of ARC, said the organization’s decision to support the ODH wasn’t politicking on the backs of patients.
“I’m the first person to say that everyone deserves care and treatment—but if there are waiting lists, those in the most dire circumstances need access to the programs first,” Anderson said. “The most sick and the most in need, they should receive treatment first. We need to remove as many barriers for them as possible.”
Those barriers, she said, include things as simple as paperwork for pharmaceutical-company subsidized medications, if necessary.
“Filling out that paperwork for multiple drugs becomes a problem if you’re that sick,” she said. “Those people deserve help first—if that occasion were to arise.”
“I haven’t heard any chatter about a situation like this happening (referencing the economic downturn), but if it were to, you have to ask yourself, if you have $10 to spend—and you need $12, something’s got to change.”
The ODH is expected to take its proposal to the Joint Committee on Agency Rule Review next week, according to department spokesperson Pollack. JCARR has 10 days from the filing date to make a decision on whether to implement the rule or not.
“We’re very confident that it won’t have any trouble getting passed,” Pollack said.