'They have taken the charge for Medicare out of my paycheck, and now that I need it, I can't have it,' says John McClain of Allen, Texas, who was diagnosed with cancer two years ago.
Matt Slocum / AP Enlarge
WASHINGTON - Master toolmaker John McClain built machine parts with details so small they couldn't be seen with the naked eye. Then a lump on his neck turned out to be cancer.
Shalonda Frederick managed a bakery and decorated cakes for special occasions. One day her face and hands, and her arms and legs, started clenching up. Then she fell off a ladder at work. It turned out to be multiple sclerosis.
Mr. McClain, 56, and Ms. Frederick, 33, are unlucky enough to have gotten seriously ill in their most productive years. Theirs is a daily struggle against life-changing circumstances.
As if that weren't enough, after years of counting on employer medical benefits, they are uninsured - and trapped in one of the most troubling gaps in the nation's health care system.
After reviewing their cases, the government declared Mr. McClain and Ms. Frederick too sick to work and started issuing them monthly Social Security disability checks. Then they found out they'd have to wait two years to get health-care through Medicare.
Even though workers and their employers pay the payroll taxes that fund Medicare, federal law requires disabled workers to wait 24 months before they can begin receiving benefits.
Mr. McClain and Ms. Frederick are far from alone. An estimated 1.8 million disabled workers are languishing in Medicare limbo at any given time. And about one out of eight dies waiting.
As many as one-third of those waiting are uninsured.
Without health insurance, multiple sclerosis victim Shalonda Frederick of Glen Burnie, Md., cannot afford a $3,000 injection that helps control her disease.
Rob Carr / AP Enlarge
Ms. Frederick needs an expensive injection to control her symptoms; Mr. McClain, a scan of a new, and potentially problematic, spot. Neither can afford it. Instead, they fend off creditors, sink deeper into debt, and fume that a system they paid into all those years isn't available when they need it.
"The government is the screwiest insurance company I ever saw," said Mr. McClain of Allen, Texas. "What is it that I was paying for out of my check every pay period? They have taken the charge for Medicare out of my paycheck, and now that I need it, I can't have it."
With President-elect Barack Obama promising to guarantee health-care coverage for all, advocates for the disabled are hoping that repeal of the Medicare waiting period is finally at hand.
"The current law is really indefensible," said Sen. Jeff Bingaman (D., N.M.). "There is no logic behind requiring people who are determined to be disabled to wait two years before they become eligible for Medicare."
Mr. Bingaman introduced a bill to phase out the waiting period, and as a senator Mr. Obama co-sponsored it.
It turns out there is a simple explanation for the waiting period: cost.
In 1972, Congress and President Richard Nixon agreed to expand Medicare to cover not only seniors but the disabled. They created a waiting period to minimize costs and discourage people from gaming the system.
Over time, the consequences of the waiting period - and the costs of repeal - have only grown.
In the 1970s, there wasn't a whole lot medical science could do for many cancer patients. Now cancer is thought of less as a death sentence, and more as a manageable disease.
But as drugs and treatments for serious illnesses have improved, the cost of closing the Medicare gap has ballooned. Estimates range up to $12 billion a year. And that gives lawmakers pause.
"When it comes to people dying of cancer, you can't help but be sympathetic," said Sen. Charles Grassley (R., Iowa.). "But at a time when we have a big downturn in the economy, it may be questionable what can be done in a lot of these areas."
Mr. Grassley, the senior Republican on the Senate committee that oversees Medicare, said he hasn't made up his mind about a repeal of the waiting period.
A possible compromise that could save taxpayers money would be to subsidize a continuation of employer coverage for disabled workers during the 24-month wait. Many can keep their benefits now, provided they pay the full premium, which not all can afford.
But that wouldn't help those without job-based coverage.
The government already exempts people who need kidney dialysis and those with Lou Gehrig's disease from the waiting period.
Economist Pamela Farley Short of Penn State University, who has researched the issue, said the waiting period should concern all workers.
"It's easy to think it's not going to happen to me," she said. "But when you follow people over time, just over 15 percent of those who are 55 are going to be on Medicare before they turn 65. That doesn't seem so trivial."
Nearly 7 million disabled people under age 65 are now covered through Medicare.
Of those still waiting for coverage, about 60 percent manage to hang on to private insurance. Many draw down their retirement savings to pay premiums through a previous employer's health plan. Others fall into poverty and are picked up by Medicaid. As many as one in three, like Mr. McClain and Ms. Frederick, wind up uninsured.
Mr. McClain was diagnosed with cancer a little more than two years ago. He was at work one night when he reached up to scratch his neck and felt a big lump. He hadn't been feeling particularly well for several months. The next day he started getting dizzy and went to the emergency room.
Eventually, the diagnosis came back: a tumor on his left tonsil.
Mr. McClain doesn't spare himself when it comes to blame. He started smoking cigarettes at 13, and, though he has cut down, has been unable to quit.
"I don't know how to say how stupid I am for still smoking," he said.
His cancer treatment has been arduous: Chemotherapy. Radiation. A feeding tube. Bouts of depression and anxiety. His weight dropped from about 150 pounds to 116. But the cancer seems to be retreating.
Mr. McClain has begun to feel his energy come back, and he yearns to go back to the machine shop. Yet he is worried about a small area in his throat. And he can't afford to pay for a scan because he lost his insurance at the end of October.
"I think I have around $22 in savings," he said. "After talking with my creditors and a debt management company, it sounds like bankruptcy. The funny part is, I have a perfect payment history to this day, and none of them can figure out how I made it this far."
Like Mr. McClain, Ms. Frederick, the former bakery manager, is spiraling toward bankruptcy.
Multiple sclerosis is a progressive disease in which the immune system attacks the protective covering around the nerves. It can lead to paralysis. Ms. Frederick was diagnosed in 2002.
"My MS affects my mobility," said Ms. Frederick of Glen Burnie, Md. "I have shaky hands and legs. When I lay still at night, I can feel my muscles vibrate. It's like a dim humming and I can't sleep. I stretch my legs, and then I can't bend them."
Ms. Frederick had to leave the bakery because her hands shook too much to decorate cakes. Then, in the fall of 2007, she lost her fallback job as an event planner. Even with her disability check, she is behind on rent and utilities. Without health insurance, she can't afford an injection that costs around $3,000 each time and helps control her MS. She is supposed to get a treatment every three months. Her last was in July.
"They tell you to go to school and graduate and get a career," Ms. Frederick said. "I did all of that, so why is this happening now?
"I'm old enough to know that there are things in life that happen that aren't fair," she continued. "I was employed from when I was 15 to when I was 32. I worked my whole life and I paid into this fund."