Caught in Medicare Limbo

In the United States, nearly 1.5 million people under age 65 with severe and permanent disabilities do not have access to Medicare coverage because of a mandatory waiting period, according to a new report by the Medicare Rights Center.

A little-known part of Medicare law requires all disabled people receiving Social Security to wait two years after they start receiving disability benefits before they receive Medicare benefits, notes the report, “Too Sick to Work, Too Soon for Medicare: The Human Cost of the Two-Year Medicare Waiting Period for Americans with Disabilities” (www.medicarerights.org/Too_Sick_To_Work_Too_Soon_For_Medicare.pdf).

“It’s a standing national disgrace,” says Robert Hayes, who is president of the Medicare Rights Center. “In one moment, many in this group lose their employment and their health insurance.”

The waiting period has been in place since 1972, when Medicare was extended to people with disabilities, Hayes says. As chronic and disabling conditions increase in this country, however, so does the number of people caught without access to Medicare.

Today, of the 1.5 million people on SSD in the waiting period, more than a quarter have no health insurance, and nearly 40 percent are uninsured for at least some of that time, according to the report. Twelve percent of people in the Medicare waiting period die each year while waiting for their coverage to begin.

A movement is under way in Congress to eliminate that waiting period. But in the meantime, Troy Budro, 54, a construction supervisor from Livingston, Texas, is in health insurance limbo.

In October 2006, Budro had to stop working after being diagnosed with mouth cancer. His health insurance was dropped from work and he could not afford continuing his coverage himself. He also had no short- or long-term disability insurance.

After several attempts at applying for disability benefits under SSD, he was approved in January.

While waiting the required five months for SSD to kick in, Budro underwent a grueling 17½-hour surgery to remove the cancer. The left side of his jawbone, two-thirds of his tongue and all of his teeth were removed during the operation.

“I wasn’t supposed to talk again,” he says.

“I’m not sure how much I owe at this point, ” Troy says, but adds that his chemotherapy alone cost $3,250 per treatment and he has had five treatments, plus 30 radiation treatments, and has a hospital bill for $6,000.

With help from the American Cancer Society, Budro was able to get healthcare coverage under Medi­caid, only to lose that option when his SSD began: His $914 monthly benefit from Social Security disqualified him for Medicaid in Texas.

Now he has a 4-inch-thick file of bills for his chemotherapy, radiation and other health costs related to the cancer.

“I’m not sure how much I owe at this point,” he says, but adds that his chemotherapy alone cost $3,250 per treatment and he has had five treatments. He also received 30 treatments of radiation after going off Medicaid but has not been sent a bill. And he has a hospital bill for $6,000.

After sharing his financial situation, much of Budro’s treatment costs have been waived by the cancer centers, hospitals and doctors he used, he says. Social workers acted as advocates on his behalf to get the fees waived.

But he’s still worried about how he will pay for what he does owe. Medicare won’t start for him until January 2009.

“I have no credit cards or bank account and no savings,” Budro says. “I’m grateful for the treatment I received, but definitely concerned about what I do owe.”