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Volume 12 Number 30 Thursday, April 12, 2007 ATLANTA, GA — A coalition of 33 patient advocacy groups sent a letter to Congress April 11 asking lawmakers to eliminate the two-year waiting period for Americans with severe disabilities for their Medicare coverage to begin. The groups sending the letter include United Cerebral Palsy, the National Multiple Sclerosis Society, Easter Seals, Paralyzed Veterans of America, and other groups, including the Medicare Rights Center, a New York city-based group that says it is a Medicare consumer assistance organization. The letter was sent to Senate Finance Committee Chairman Max Baucus (D-Mont.), the committee's ranking minority member, Charles E. Grassley (R-Iowa), and two other committee members, Sens. John D. Rockefeller IV (D-W.Va.) and Orrin G. Hatch (R-Utah), and to House leaders. In a press release, the Medicare Rights Center said that about 600,000 Americans with severe and debilitating disabilities have no insurance and go without health care or into debt while waiting the required two years for their Medicare coverage to begin. "Congress must eliminate the cruel and arbitrary two-year wait for Medicare which punishes Americans who are hit by severe illness or injuries that make it impossible to keep working," MRC President Robert M. Hayes said. Disabled Individuals The MRC also released a report profiling 21 disabled individuals and their efforts to receive Medicare benefits. In the report, "Too Sick to Work, Too Soon for Medicare: The Human Cost of the Two-Year Medicare Waiting Period for Americans with Disabilities," the individuals profiled left the workforce due to a variety of reasons, including cancer, chronic cardiac conditions, a car accident, and debilitating injuries. According to the report, some disabled in the gap pay premiums for COBRA coverage but soon find them unaffordable on disability income. Others qualify for Medicaid coverage initially but lose eligibility when their disability income begins, which is five months after being deemed disabled by the Social Security Administration, the report said. Other people interviewed spend their savings to pay for private health insurance but also find the premiums are unaffordable, or private insurers will not cover someone with a pre-existing condition, according to the report. Waiting for Coverage People deemed disabled by the Social Security Administration due to health problems are not eligible for Medicare until 24 months after they receive their first Social Security Disability Income benefit, the report said. Nearly seven million people under age 65 qualify for Medicare because they have severe and permanent disabilities, the report said. About 1.5 million Americans are in the Medicare waiting period. Twelve percent of people in the Medicare waiting period die each year while waiting for coverage to begin, the report said. According to the report, providing men and women with Medicare at the time that Social Security certifies them as disabled would cost $8.7 billion annually. That cost would be partially offset by $4.3 billion in reduced spending by Medicaid, which many individuals get for some time during the waiting period, the report said. The two-year waiting period was established in 1972 when Medicare was extended to people with disabilities. Under current policy, the report said, there are two exceptions: people who are disabled due to amyotrophic lateral sclerosis (sometimes called Lou Gehrig's disease) or end-stage renal disease. The report is available. Life in Medicare's waiting period By Julie Appleby, USA TODAY The rare muscle disorder that twisted her spine and compressed her lungs, making it hard to breathe, finally forced Roxianna McCutchan to quit her job as a clerk and dispatcher at the Rockport Police Department in Rockport, Texas, in July 2002. "I was so independent and had an attitude that, 'I'm going to work, I am going to be a success, and no one is going to stop me,' " says McCutchan in an e-mail because she has now nearly lost her voice. "And then my body says, 'I can't keep up. You have to stop.' " Each year, tens of thousands of Americans like McCutchan find themselves disabled and unable to work. After going through the process to get Social Security disability income, most are shocked to discover that they have to wait two more years to be eligible for Medicare, the federal health program for elderly and disabled people. "I would still be there working and loving my job if I could," says McCutchan, 36, who now lives in Victoria, Texas. "I lost all that and had no clue that Medicare wouldn't be there to help me." McCutchan and 20 others tell their stories about life in the two-year waiting period today in a report released by New York-based advocacy group the Medicare Rights Center, which is lobbying to end the waiting period. "There's no more desperate group of uninsured Americans than people who are severely disabled, suddenly unemployed and without any access to health coverage," says Robert Hayes, the center's president. The report, funded by the center and the Commonwealth Fund, comes amid renewed interest among lawmakers in Congress and the states to reduce the number of uninsured. Among the nation's 45 million residents without health coverage, the center's report says, an estimated 400,000 are disabled people in the waiting period. The waiting period, instituted when Medicare was expanded to cover disabled people in 1972, was meant to limit the cost to Medicare and ensure that only people with severe and long-lasting disabilities would qualify. Efforts to eliminate the waiting period have generally failed, with two exceptions: Congress has amended the law to allow quicker access for those with end-stage kidney disease or Lou Gehrig's disease. Still, advocates such as Hayes say they are optimistic that Congress will change the law to eliminate or reduce the waiting period. A bill that would phase out the waiting period has been introduced by Rep. Gene Green, D-Texas. "I represent a blue-collar district, people who work at petrochemical plants and machine shops," says Green, who had a similar bill last year that failed. "There are times when they get injured on the job. It's really difficult to get through the process for disability (income) and then have to tell them they don't have health care for two years." Cost could add $8 billion But cost could be a barrier: Estimates range from $5 billion to more than $8 billion a year to offer Medicare to disabled people in the waiting period — and Medicare's hospital fund is already expected to hit insolvency in just over a decade. "There's a judgment call here about how big a problem is this," says Joe Antos, a health policy researcher at the conservative American Enterprise Institute. "If Congress decided to change the rule … (it is) locking in a permanent increase in entitlement spending of some amount forever." Some of that money may be offset by savings in the federal/state Medicaid program. But the Democrat-controlled Congress has pledged to keep federal spending in check — and to offset new spending with cuts elsewhere. Other proposals to help different groups of uninsured, particularly children, are also competing for attention and dollars. Debating expansion of Medicare to cover disabled people in the waiting period thus puts Democrats in a dilemma, says Antos. "Kids are a very appealing group politically," he says. "The disabled may not be as appealing politically." After leaving her job, McCutchan could not get private insurance on her own because no insurer would take someone with her medical history. Living on $796 a month from Social Security, she says, she could not afford the payments needed to continue coverage from her former employer. Yet she made too much to qualify for Medicaid. Her primary care doctor agreed to see her for free, and her church helped her buy the oxygen she needed. Still, she was unable to avoid falling seriously ill several times. She was in the hospital four times in 2003. "Asking for help and relying on the kindness of a doctor takes away your pride and dignity, your self-esteem," McCutchan says. By the time she qualified for Medicare in January 2005, she weighed 73 pounds and was $20,000 in debt. Too ill to get insurance There are no precise estimates of how many people, insured or uninsured, are in the waiting period, but the number probably ranged from 1.4 million to 1.5 million in 2003, says a report by researcher Gerald Riley published in the journal Inquiry in fall 2006. Of those, a National Institute on Aging Health and Retirement Study in 2001 estimated that 27% to 39% had been uninsured at some point during their waiting period. Often, that's because they are too ill to qualify for private insurance, their Social Security income puts them over the limit for Medicaid coverage and they can't afford to continue insurance through their former employers. Elaine Gilbertson of Overland Park, Kan., had a stroke on Christmas Day in 2003 when she was 57. Covered by her employer's insurance, she received four months of hospital treatment, nursing home care and therapy to relearn how to walk, talk and feed herself. Unable to return to work at her job as a project assistant at a pharmaceutical company, Gilbertson, who is also in the center's report, was approved for Social Security disability income in June 2004. After 18 months, her eligibility for coverage through her former employer ended. She was uninsured for the next eight months. None of her doctors would give her a discount on treatment, Gilbertson says. She stopped seeing the ophthalmologist who was monitoring her eyes for complications of diabetes. She stopped injections that helped her mobility. "I got no therapy," says Gilbertson, now 60. In June, Gilbertson became eligible for Medicare. Geraldine Rowe, a 51-year-old Pittsburgh woman who is not in the Medicare rights report, is still waiting for coverage. Lung cancer and a stroke rendered her unable to work. She received care through Pennsylvania's Medicaid program for a while. But once her Social Security disability income was approved, the $1,160-a-month payments put her over the income limit for help, and she was cut off. She says private insurance is too costly, at about $300 a month. So she tries to avoid going to the doctor and is relying on providence to keep her well. "Either you get health insurance or you keep a roof over your head," says Rowe. "I just hope God will be with me."
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