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The Devil in the Details, Part V

The disabled still must wait for Medicare
January 25, 2010

Every lobbyist swarming Capitol Hill these days knows that, when it comes to legislation, the devil is always lurking in the details, not lounging in the concepts. Yet concepts, not details, are drifting down to the public—who will be in for a surprise when they realize that reform is not what they think it is. How these details are hashed out, or slipped into a bill at the eleventh hour is crucial to the success or failure of reform. This is the fifth of a series of occasional posts that will look at where the devil lies in key provisions of the health care bill. The entire series is archived here.

Friday, The New York Times listed a bunch of provisions a scaled-back health reform bill might address: tax credits to help small businesses buy health insurance for workers; coverage for kids under age nineteen who have pre-existing conditions; financial incentives to states for expanding Medicaid to cover childless adults and parents. Medicare changes might include rewarding doctors who provide high-quality health care, and reducing the ever-rising payments to doctors and hospitals. Then there’s the much-loved goal of closing the donut hole in Medicare’s prescription drug benefit. That would help people who take very expensive medicines.

There was no mention of the two-year waiting period that some must endure before becoming eligible for Medicare benefits. This waiting period disproportionately affects the 1.8 million people under age 65 who are too sick to work and have qualified for Social Security disability payments, not an easy thing to do. They have been waiting for more than three decades for Washington to hear their pleas. For awhile this time around, the disabled community thought Congress would phase out or eliminate the waiting period, giving them the health care they need but can’t afford. Most have lost coverage from their employers, don’t qualify for a policy because they are sick, and couldn’t afford one anyway.

Closing the donut hole, though, has more cache. But the real reason it’s high on the list is that it may be cheaper than helping the disabled. Covering all the people in Medicare’s waiting period would cost $113 billion over ten years; Congress would rather spend that amount on other groups of people. Remember—the drug companies agreed to pay half the cost of brand name drugs for seniors whose pharmaceutical expenses had hit the donut hole limits, a gesture that also lets them expand the market for their most lucrative products. By any measure that’s a win-win for Pharma.

No large special interest group is offering to help the disabled. What’s the payoff for helping these people who are already used to waiting? Their loose alliance of supporters, the Coalition to End the Two-Year Wait for Medicare, gets almost no attention and lacks Big Pharma’s loud bark.

The press had pretty much ignored the Medicare disability problem until last week, when Ricardo Alonso- Zaldivar of the Associated Press wrote a piece called “Health bill has coverage problems—Disabled workers face Medicare wait.” We were pleased to see Zaldivar address the matter, and the AP is a good outlet in which to do so. Presumably thousands, maybe millions, of readers across the country saw his story. He reported the medical worries of sixty-one-year-old Lea Walker, a disabled former home health nurse in North Carolina, who has trouble walking to her front door. Zaldivar talked to New Mexico Sen. Jeff Bingaman, who tried to push for a phase-out of the waiting period. Bingaman tried to put a positive spin on a festering problem:

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I think everyone needs to realize this is going to be a first, very major step toward health care reform and then there will be a need to come back in the next several years and make midcourse adjustments.

Mid-course adjustments in the next several years? What are the disabled supposed to do in the meantime? Tough it out? Bingaman said the bill would fix “an awful lot of the problem.” Zaldivar challenged that assertion, noting “it’s not clear how well that [the proposed bill] would work.” The great big bill, which may be in jeopardy anyway, would let sick people buy policies immediately, through high risk pools.

That option already exists in many states, but has never worked well for many who need coverage. Premiums are sky-high, and pools sometimes have quotas and waiting periods for the very illnesses that qualify someone for pool coverage in the first place. These are usually six months, but can take as long as a year. The Senate bill calls for a six-month waiting period; the House would let people get coverage right away if there was a medical necessity for the insurance. Does that mean yet another set of qualifying hoops for the disabled?

In a story last fall, Zaldivar took a hard look at the risk pool provision in the proposed bills, examining the six-month waiting period. He raised another, equally important issue: the $5 billion set aside by Congress to help people like Ms. Walker is not enough to help all those who need it. Then he wrote that that such a small budget might work if people don’t sign up. “If only one-third were to enroll, the budget could work,” Zaldivar said. Perhaps that’s what Congress is counting on to ration the dollars it’s willing to commit to helping the disabled and others in a similar fix. Walker told the AP:

It’s atrocious that in America we would have people with medical problems bad enough that they can’t work, and they’re not able to afford to seek medical help. I just can’t believe they didn’t cut out the two-year wait.

Like Zaldivar, the public is beginning to connect the dots. Treatment of the disabled is one more indication that the country has still not embraced universal health insurance coverage, and won’t in this latest effort. And that brings us back to the headline on Zaldivar’s very good story.

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.