Eliminate Waiting Period for People with Disabilities
Medicare is not only for people over age 65—since 1972, coverage has also been available to people with disabilities.
Nearly 7 million Americans under age 65 qualify for Medicare due to severe and permanent disabilities. However, their coverage doesn’t begin immediately or automatically when they first become disabled. The law states that they must wait two full years from the date their Social Security Disability Insurance begins before they can receive Medicare.
This 24-month waiting period exposes millions to financial hardship, pain and suffering.
According to a 2003 study by the Commonwealth Fund, as many as one-third of those in the waiting period may be uninsured or have inadequate insurance coverage. By the time they obtain Medicare coverage, 77 percent are poor or nearly poor. Close to half have incomes below the poverty line. After qualifying for Social Security Disability Income (SSDI), nearly 12 percent of individuals die while still in the Medicare waiting period.
Stan White lived in South Carolina with his wife and two children. A veteran, he worked for 30 years at a textile company, developing the nickel-plated machinery used to make cloth patterns. A talented artist, Stan spent his free time creating promotional artwork for community events and drawing cartoons for his local paper.
Then, in January 2002, when he was 56, Stan had a stroke that partially paralyzed his right side. Forced to leave his job, he applied for SSDI . He was able to remain insured through COBRA (Consolidated Omnibus Budget Reconciliation Act), but only because his former employer helped pay for it.
Shortly after suffering the stroke, Stan developed speech problems. Three months later, he had a seizure, and in July a doctor found a tumor in his brain that had grown to the size of a lemon. The doctor diagnosed Stan with an aggressive form of cancer, put him on steroids, and removed the tumor. The treatment failed to eradicate the cancer, and Stan was given four to six months to live. That spring, Stan was approved for SSDI and began to receive disability income, but not Medicare, in July.
Around the time of Stan’s cancer diagnosis, his sister, Marlene was able to get him into 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 his former company went out of business and stopped helping him pay for COBRA. The family’s savings had already been drained by health care costs and COBRA payments. Stan refused to touch his retirement fund or sell his home during these crises. But because his SSDI payments were too high for him to qualify for Medicaid, he could not continue paying COBRA and became uninsured.
Stan and his family worried the cancer would return before he became eligible for Medicare. He remained uninsured because his preexisting medical conditions made private insurers unwilling to cover him.
In February, less than one year before he would become eligible for Medicare, Stan learned that the tumor had returned. Without health insurance, every treatment was too expensive and his condition quickly deteriorated. With no other option, Stan and his family begged the hospital that had run the clinical trial for charity care. He was readmitted as a participant, but the experimental treatment was not successful.
By the time Stan became eligible for Medicare in July 2004, the cancer had robbed him of speech and nearly all movement. He received Medicare coverage in time to receive hospice care, and died in September 2004.
“My brother worked for over 40 years paying taxes, and he had paid into Medicare since it was established,” his sister said. “He worked hard to take care of his family, neighbors, and country, but never received the benefits of the system he supported.”
Like Stan, the majority of people who become disabled were previously working full time and paying into Medicare. But if life takes a mean turn, and you are injured in a car accident or diagnosed with a disabling disease—just when you need health care coverage the most because you’ve lost your health, job, income, and health insurance—federal law requires you to wait two full years to become eligible for Medicare.
An accident or disabling illness can happen to anyone, and few have the financial resources to carry them through the waiting period. By the time they obtain Medicare coverage, most people are poor or nearly poor.
Congress has already acknowledged that the 24-month waiting period can be a death sentence for people with specific diseases—it has already eliminated the waiting period for people with amyotrophic lateral sclerosis (Lou Gehrig’s disease) and for end-stage renal disease (ESRD) for which a lack of treatment is fatal. Now it’s time for Congress to eliminate the 24-month waiting period for all other people with disabilities.
As a concerned citizen, you can act for change in Congress. Take action now!
Read about the most recent developments on this topic in Asclepios or learn more in any of the materials below.
Two-Year Wait Letter to Chairmen of House Committees, July 2009
Two-Year Wait Letter to Senate Finance Committee, May 2009
Two-Year Wait Letter to Senator Bingaman and Congressman Green, March 2009
Two-Year Wait Letter to Congress, November 2020
Two-Year Waiting Period Fact Sheet, April 2009
Too Sick to Work, Too Soon for Medicare: The Human Cost of the Two-Year Medicare Waiting Period for Americans with Disabilities, April 2007