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Still Waiting
June 8, 2006 • Volume 6, Issue 23One year ago, Senator Jeff Bingaman, Democrat of New Mexico, and 17 colleagues from both parties introduced legislation to eliminate the 24-month period a person who is eligible for Medicare because of a disability must wait out before Medicare coverage starts.
It is a two-year prison sentence for many. Men and women with disabilities struggle to survive while they wait for their Medicare coverage to start. For some, it is a death sentence.
During this last year, Congress has passed $70 billion in tax cuts that benefit the richest 1 percent of taxpayers while slashing $39 billion from Medicaid, the health insurance program for poor Americans.
What action have our elected representatives taken on the 24-month waiting period?
Not one vote. Not one hearing. Not one thing.
The 24-month waiting period is an aberration in a Medicare program that represents a triumph of American compassion and common sense—a decision that society would guarantee health care for older adults and people with disabilities.
Here is how it works. Individuals under 65 who have paid into the system and are deemed by the Social Security Administration to have a severe and permanent disability receive Social Security Disability Insurance (SSDI) after a five-month waiting period.
But once the first SSDI monthly check arrives, there is a new 24-month wait for Medicare coverage to begin.
While they wait they suffer: some go without critical health care while others go into insurmountable debt to pay for it. Some rely on charitable care.
In 2002, there were an estimated 1.2 million people with disabilities in this two-year waiting period. About one-third of these people—400,000 individuals—were likely without health insurance.
Every one of those people has a story that makes a powerful case for eliminating the waiting period. Here is one:
Stan White lived in South Carolina with his wife and two kids. He worked in the textile industry until January 2002, when he had a stroke that partially paralyzed his right side. Forced to stop working, he purchased COBRA, which allowed him to continue the coverage he had under his company’s health plan, but at a very high monthly premium. Soon after, he began to have speech problems. He had a seizure that April and was later diagnosed with a malignant tumor. In July, Stan began to receive Social Security Disability Income. Stan was able to participate in a hospital-based clinical trial that involved a new experimental drug, which successfully attacked the tumor. COBRA paid 80 percent of the cost and Stan was able to afford the rest.
Stan was cancer-free the following year, but the factory where he had worked went out of business and his COBRA coverage ended. Uninsured and still waiting for Medicare, Stan’s tumor returned in February of 2004. By this time, Stan’s savings account had been drained by high COBRA premiums and health expenses. Eventually, thanks to relentless advocacy by his sister and because he fit the protocol for a clinical trial, he was admitted to the hospital. Looking back, his sister wishes that they could have afforded a different treatment, but their only choice was the experimental procedure he received as part of the trial. The experimental treatment was not successful. Stan finally received Medicare in July 2004, in time to receive hospice care. He died in September 2004.
The proportion of people in the waiting period who have no health insurance is likely higher today, because health insurance is less accessible and less affordable than it was four years ago. States have tightened up Medicaid eligibility, curtailing access to health benefits for the poor. Employer-sponsored health coverage has been steadily eroding and monthly premiums have been rising steeply. This means the COBRA program, which allows former employees to pay to keep the coverage they had under their last job, is either inaccessible or unaffordable to people forced to leave their job after being struck with a disability.
While they are waiting for Medicare coverage, people without health insurance go without necessary medical care and skip taking vital medicines. If they survive, they wind up sicker and more expensive to care for when Medicare coverage does begin. About 4 percent of people in the waiting period die every year.
Statistics, however, do not convey the true impact of this built-in barrier to coverage. The individual stories—stories of people struggling to find a way to pay for food and rent and high medical costs—are what Congress needs to hear. Please write Senator Chuck Grassley, Republican of Iowa and chairman of the Finance Committee, to ask for a hearing on the 24-month waiting period. Please write Senator Chuck Grassley, Republican of Iowa and chairman of the Finance Committee, to ask for a hearing on the 24-month waiting period.
Medical Record
Legislation proposed in both the U.S. House of Representatives and U.S. Senate last year “would, over 10 years, completely phase-out the two-year waiting period which Americans with disabilities must endure before receiving Medicare coverage. The legislation also creates a process by which the Secretary [of Health and Human Services] can immediately waive the waiting period for people with life-threatening illnesses” (“Ending the Medicare Disability Waiting Period Act of 2005,” Center for Medicare Advocacy).
Congress had originally put the waiting period in place as a guard against high costs and overlapping insurance plans (“Social Security Disability Insurance [SSDI] and Medicare: The 24-Month Waiting Period for SSDI Beneficiaries Under Age 65,” Congressional Research Service Report for Congress, July 14, 2005).
Four percent of people in the 24-month waiting period die each year (“Elimination of Medicare’s Waiting Period for Seriously Disabled Adults: Impact on Coverage and Costs,” The Commonwealth Fund, July 2003).
According to a Commonwealth Fund study, by the time people with disabilities reach the end of the two-year waiting period for Medicare, a majority can be considered “poor or nearly poor.” Almost half are below the poverty line, and about one-third likely have no health coverage (“Waiting for Medicare: Experiences of Uninsured People with Disabilities in the Two-Year Waiting Period for Medicare,” The Commonwealth Fund, October 2004).
Fast Relief: Part D Monitoring Project
The Medicare Rights Center (MRC) needs to hear about all the problems with the Medicare Part D benefit, whether they happen to you or someone in your community. With this information, we will be armed with the needed evidence to push for a Medicare-administered drug benefit.
Submit your story at www.medicarerights.org/partdstories.html
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The Louder Our Voice, the Stronger Our Message Asclepios — named for the Greek and Roman god of medicine who, acclaimed for his healing abilities, was at one point the most worshipped god in Greece—is a weekly action alert designed to keep you up-to-date with Medicare program and policy issues, and advance advocacy strategies to address them. Please help build awareness of key Medicare consumer issues by forwarding this action alert to your friends and encouraging them to subscribe today.
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