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A Tip of the Hat to The Oregonian

For finding health reform’s forgotten people
June 30, 2010

We often thought nobody was paying attention when, during the health reform debate, we urged the press to investigate the plight of some two million disabled Americans who qualify for monthly disability checks from Social Security. Yet they can’t get health coverage from Medicare for the very ailments that caused their disability—unless they wait two years. It’s an agonizing and cruel wait that sometimes means they can’t pay for the care they badly need.

So we were really pleased to see Sunday’s story in The Oregonian, by Anne Saker, which called attention to this problem by spotlighting a fifty-seven-year-old disabled woman named Sue Sherman who is coping with pancreatic cancer. Her plight illustrates the traps that snare the disabled in every state.

When Sherman’s COBRA benefits ran out, she was poor enough to qualify for the Oregon Health Plan. But a few months later, she was over the line—her Social Security benefits were too generous, and they disqualified her. She then turned to the state’s high-risk pool, and currently pays about $800 monthly for a policy that covers a portion of her doctor and hospital bills—but not her drugs, which cost about $8,000 each month. Her daughter, who is caring for her, says that the family is paying eleven different medical bills right now.

Even though the disease was taking its toll, Sherman tried to fight the two-year restriction by calling and writing Oregon legislators. Their responses, she thought, were uninformative. Rep. David Wu sent her a ton of research papers. In one of them was a statistic indicating that about twelve percent of Social Security recipients don’t last the two years. “That’s it then,” Sherman said. “They’re just waiting for us to die.”

When the drive for reform started, Medicare advocacy groups loosely organized around getting immediate coverage for the disabled, but their weak efforts failed to persuade the pols. You see, covering the disabled when they first qualified for Social Security disability would cost about $113 billion over ten years. That was less than the $210 billion it would cost to stop the doctors’ fee cut, but the doctors’ lobby and its slick PR apparatus outgunned the band of Medicare advocates. In the end, the docs got a partial reprieve from the cuts—plus a small increase—while the disabled continue to tough it out.

So what’s in store for this group? The rationale for not helping them now was the prospect of participating in the new state insurance exchanges, which will start in four years. Then, they can sign up for a policy; if they are poor, they’ll get some portion of the premium paid for. During the debate, there was no word on what they’re supposed to do in the meantime.

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They might also apply to the new stop-gap risk pools the states are supposed to activate tomorrow. But there’s a catch. They have to wait six months to actually get coverage—victims again of another cost-saving move by the feds. Then, if they do get coverage, they have to hope that the state doesn’t run out of funds during the next four years.

As we have repeatedly noted, the $5 billion set aside for these new risk pools isn’t enough to cover everyone who may need coverage. As the AP reported yesterday, Medicare economists have estimated that around 375,000 people will sign up this year, but that the money will run out at the end of 2011. Virginia’s governor predicted that his state’s allocation of $113 million would run out after twenty-two months.

People like Sherman may have humongous drug bills, but the centerpiece of the government’s health care rollout so far—the $250 rebate for the three million Medicare beneficiaries with high drug expenses—doesn’t touch them. Remember, they are still waiting for Medicare. Kudos to The Oregonian for reminding its readers that, for 15,000 people in the state, the wait drags on.

Trudy Lieberman is a longtime contributing editor to the Columbia Journalism Review. She is the lead writer for CJR's Covering the Health Care Fight. She also blogs for Health News Review and the Center for Health Journalism. Follow her on Twitter @Trudy_Lieberman.