Two-year wait for Medicare devastating to people with disabilities

From The Dallas Morning News:

On her good days, Metta Johnson can sit by a friend's pool and enjoy the sun. On her bad days, the 61-year-old Dallas woman with severe arthritis can do little more than lie in bed, writhing from the pain.

But whatever each morning brings her, Johnson at least knows she's one day closer to receiving Medicare and the health care she hopes will improve her life.

Besides covering 38 million Americans 65 and older, Medicare helps pay for the health care of more than 7 million younger Americans who suffer from significant disabilities.

Under current law, however, those with disabilities aren't eligible for Medicare until two years after they begin receiving Social Security disability insurance checks. Johnson is one of 1.8 million disabled Americans in that two-year waiting period.

No longer able to work, she became eligible for Social Security disability benefits in February 2008, which means she has seven months left until she goes on Medicare.

Because she can't afford private insurance, she prays that her condition doesn't worsen before then.

"It's not my fault that I'm disabled," Johnson said. "I paid my Social Security and Medicare taxes during my entire working life. Why now, when I most need the care, must I wait so long? It doesn't seem fair."

Advocates from 120 consumer groups are asking the same question of Congress as the lawmakers work on health care reform legislation. The coalition – which includes the Alzheimer's Association, American Cancer Society Cancer Action Network and National Multiple Sclerosis Society – has called for an end to the Medicare waiting period for people with disabilities.

"No one with disabilities severe enough to qualify for Social Security should be without health insurance," said Joe Baker, president of the Medicare Rights Center, a consumer advocacy group and coalition member. "Many people skip medical treatments and medications while waiting, and one in seven dies. Medicare should be immediately available."

When Congress extended Medicare coverage to people with permanent disabilities in 1972, it also established the waiting period. Lawmakers added the wait to hold down the cost of the new government benefit, avoid overlapping with private insurance and make sure Medicare would be available only to people whose disabilities were long-lasting.

Despite what seemed like sound reasons for its enactment at the time, the 24-month waiting period has left millions of Americans vulnerable at the worst time of their lives, draining their finances and jeopardizing their health, said Stuart Guterman, a policy analyst at the Commonwealth Fund, a private foundation that researches health care issues.

Mary Sue Welch, who counsels North Texans with disabilities at the Reach Resource Center on Independent Living in Dallas, said she witnesses the personal hardships created by the Medicare waiting period every day.

"These people have lost their jobs because of their condition and wait anywhere from several months to several years for Social Security to decide whether they qualify for disability benefits," she said. "When they finally get their checks, many think their problems are behind them. But then they learn they still have to wait for Medicare coverage. It's devastating."

Forty percent of those in the waiting period go without coverage at some point. Many can't afford to take advantage of the federal COBRA law, which lets them keep their former employer's group health plan but requires them to pay four to six times their previous employee contribution. Others can't afford to obtain insurance in the individual market because of their pre-existing conditions, Guterman said.

When Johnson's arthritis becomes so bad that she can't stand it, she heads for Parkland Memorial Hospital and sometimes waits 10 hours to see a doctor and get a prescription.

"For someone with chronic pain, sitting in one of those waiting-room chairs from 9 a.m. until 7 p.m. is torture," she said. "When I start on Medicare, I'll be able to go to a private doctor."

Even for those with private insurance, the wait for Medicare can become costly.

Paul Gornstein, a 57-year-old Frisco resident with Alzheimer's disease, has been able to remain on his former employer's group plan until he qualifies for Medicare in December. But the high monthly premiums under the COBRA law and the thousands of dollars of other out-of-pocket expenses have taken their toll.

"Paul has been fortunate enough to hold on to his insurance," said his wife, Karen. "But we're burning through our savings. I expect the total out-of-pocket costs this year will approach $15,000."

Once Gornstein becomes eligible for Medicare, he'll pay $96.40 a month in premiums for the standard government coverage and will be able to buy a supplemental plan from a private insurer for an additional $200 a month. That "Medigap" policy will cover health care costs that Medicare doesn't.

Advocates who have pressed for several years for an end to the waiting period view the current health care reform debate as their best chance to make significant headway. Bills introduced by Rep. Gene Green, D-Houston, and Sen. Jeff Bingaman, D-N.M., would phase out the waiting period over a number of years while immediately eliminating it for people with life-threatening conditions.

The current law makes only two exceptions. There is a three-month waiting period for people with end-stage renal disease and no wait for people with amyotrophic lateral sclerosis, commonly called Lou Gehrig's disease.

Advocates aren't convinced that merely broadening the public's access to insurance, as health care reform legislation would do, would solve the problem for people with disabilities. They fear that the private insurance might not be as affordable or as comprehensive as Medicare's coverage and might not be adequate for people suffering from serious illnesses.

"A private plan isn't going to be of much use to someone with a disability if it doesn't pay for the medical equipment that helps that person get around and lead a productive life," said Baker, of the Medicare Rights Center.

The chief obstacle to making Medicare immediately available to all Social Security disability beneficiaries remains money. Eliminating the wait would cost the federal government $6.8 billion the first year and $110 billion through 2019, according to the Congressional Budget Office. That's no small issue for a Congress struggling to find ways to pay for health care reform.

"No one wants to undercut health care for people with disabilities, but this country has to face up to Medicare's long-term financing problem. The system has massive unfunded liabilities," said James Capretta, a fellow at the Ethics and Public Policy Center, a research institute based in Washington, D.C.

Abolishing the waiting period without reining in Medicare's broader costs would only add to the problem, he said.

Advocates of ending the two-year wait argue, however, that their proposal's estimated cost doesn't take into account all of the savings.

Insuring people now stuck in the waiting period might reduce Medicare's spending on those individuals over the long term, said Vicki Gottlich, a senior policy attorney at the Center for Medicare Advocacy, a nonpartisan consumer advocacy organization. By the time people seek treatment after forgoing doctors and hospitals for 24 months, their conditions have worsened, and the cost of their care has increased, she said.

"Catching problems early could help control health care costs – not to mention spare lives and relieve suffering," Gottlich said.

The bottom line, advocates say, is that Americans with severe disabilities aren't getting the health care coverage they require.

"What purpose is served by idly sitting by and watching these people grow sicker as they wait?" asked Welch, of the Reach Resource Center on Independent Living in Dallas.