Anxious stay in Medicare's waiting room

Saul Friedman
November 6, 2004

It's hard to believe that things could be worse for Fay Murray. She's had three operations for a brain tumor and two hip replacements, but she has survived long enough to overcome Medicare's cruel requirement that disabled people under 65 who are eligible for coverage must wait two years.

Some people die waiting.

Murray was in her 40s when the tumor was diagnosed in 1995. But she continued to work at her customer relations job for Oxford Health until she could work no more and lost her health coverage.

Her marriage broke up just after her husband's insurance paid for her hip surgeries.

Temporary work dried up. And she had to move in with her daughter, a social worker, in Brooklyn because her Social Security Disability Insurance (SSDI), $741 a month, was nowhere near what she needed for medicines and doctors' visits to monitor the tumor and keep her alive.

When she received SSDI, Fay, who is only 57, applied for Medicare, which covers more than 6 million people under 65 who are qualified because of a severe and permanent disability. But as she learned from the New York-based Medicare Rights Center, she was one of 1.3 million disabled Americans who wait in limbo for two years before Medicare benefits take effect. And 400,000 wait in poverty and without insurance.

Why? In 1972, Congress opened Medicare to the severely disabled under 65. But to save money and discourage abuse, the legislation imposed a 24-month waiting period from the date the person's SSDI benefits begin. (There are two exceptions - persons diagnosed with Lou Gehrig's disease orkidney failure.)

"When added to the mandatory five-month delay for SSDI benefits to begin," said a center fact sheet, "the total waiting period is 29 months. The wait is devastating ... at a time in their lives when the need for health coverage is most dire. ... Not surprisingly, death rates among SSDI recipients are highest during the first two years of enrollment, when they are often forced to choose between forgoing needed medical care and exhausting their savings."

There is another cruel catch: The process of applying for SSDI is maddening enough, but thousands of disabled who had received medical care from Medicaid, a federal-state program, are shocked to find they lose that coverage when they get SSDI, because their modest benefits are too high for Medicaid eligibility. They are left with little income and no insurance.

The inhumane consequences of the little-known two-year wait are the subject of a new study by the nonpartisan Commonwealth Fund and the Christopher Reeve Paralysis Foundation, which recounts through interviews and focus groups the experiences of people as they struggle to survive. The subjects suffered from various disabilities, including spinal cord injuries, cancer, multiple sclerosis, heart disease, severe depression and HIV/AIDS.

"They speak of forgoing care; stopping medications and therapy; feeling depressed and anxious about the future. ... For most, just trying to survive and get their most basic human and health-care needs met is a never-ending job," the study said. It found that the waiting period discouraged participants from returning to work and their communities, relegating them instead to dependence on family and friends for food and shelter.

While waiting, they're haunted by the fear that the next health crisis will be their last, the study found. And for many patients, "Forgoing doctors' visits, treatments, medications and rehabilitation therapy has resulted in irrevocable damage to their physical and mental health." Many, like Fay Murray, cannot understand the rationale for the waiting period. She has two sons, as well as her daughter, but they have children and have their own struggles to make a living. She didn't want to depend on them, she said, "but waiting for Medicare, I could not afford to live by myself.

"I missed meals to pay for medicines. I missed the medicines sometimes, or I split them to make them last. I made do and prayed. But the SSDI was not enough, so I moved in with my daughter. I pay rent and I clean and do dishes, whatever I can. But I want to go do a little work. Nobody told me why I must wait."

"What's occurring," said a Commonwealth study participant in Pflugerville, Texas, who suffers from multiple sclerosis, "is these people [in the waiting period] are becoming sicker ... " A Glen Rose, Texas, participant with pancreatic cancer said, "Well, maybe the government figures you won't live long enough to have to pay that benefit ... the government is supposed to be for the people, and this law is definitely not for the people."

Another participant said bluntly the government is "just waiting for other people to die."

The Medicare Rights Center said that eliminating the 24- month waiting period would add an estimated $8.7 billion, or about 3 percent, to annual Medicare spending. But the Medicaid program, on which thousands of disabled persons in the waiting period depend, could save as much as $4.3 billion for Washington and the states.

Several bills have been introduced in Congress to eliminate or phase out the waiting period. But Fay is relieved she doesn't have to depend on Congress. There are signs, she said, that her tumor is back, but she started getting her Medicare benefits earlier this year.


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