Press Release             

FOR IMMEDIATE RELEASE
Contact: Paul Precht
Director for Policy and Communications
202-544-5561

Akiko Takano
Deputy Director of Communications
212-204-6214

November 12, 2008

Patient Advocacy Groups Call on Congress to Eliminate Two-Year Waiting Period for Medicare

Washington, DC - The Coalition to End the Two-Year Wait for Medicare-over 75 health advocacy organizations-today launched its campaign to urge the next Congress to end the 24-month wait for Medicare coverage faced by people with disabilities.

"This coalition will give voice to people with disabilities and their families who struggle to pay medical bills or who go without critically needed care as they wait for Medicare coverage to begin," said Robert M. Hayes, president of the Medicare Rights Center. "This senseless delay in health coverage for the most vulnerable among us must end."

In a letter to Democratic and Republican leaders of the Senate Finance Committee, the House Ways and Means Committee and the House Committee on Energy and Commerce, the coalition called for health coverage for people with disabilities to be at the forefront of efforts to cover the uninsured.

"This arcane rule continues to exist despite the potential harm it causes to the health of the 1.5 million people waiting for coverage. Nearly 40 percent of these individuals are without health insurance coverage at some point during their wait for Medicare; 24 percent have no health insurance during this entire period. Many cannot afford to pay COBRA premiums to maintain coverage from their former employer, and private coverage on the individual market is unavailable or too expensive for this high-cost population. The economic downturn makes it difficult for states to extend Medicaid coverage beyond the most impoverished people with disabilities," the coalition letter reads. "No one with disabilities severe enough to qualify for SSDI should be without health insurance."

Coalition leaders released the letter and launched their campaign at a 10 am November 12 press conference in room HC-6 of the Capitol Building. People currently caught up in the waiting period described their experiences and Representative Gene Green (D-TX) described legislative efforts to eliminate the waiting period.

"After receiving a life-altering diagnosis, people with disabilities, such as the half million people with young-onset Alzheimer's disease, must then wait two full years for Medicare coverage-at a time when they need coverage the most," said Brenda Sulick, the Alzheimer's Association's Director of Federal Health Policy. "Those with profound disabilities are often overlooked. With so many lives at stake, now is the time to act."

Legislation to phase out the waiting period over ten years has been introduced in the House and Senate. In the Senate, S.2102 is sponsored by Senator Jeff Bingaman (D-NM), and cosponsored by 23 senators, including President-elect Barack Obama. In the House, H.R. 154, sponsored by Representative Gene Green (D-TX) has 103 cosponsors.

As Congress and our new administration address America's health care crisis, they must place a high priority on closing the gap in coverage that affects a group of Americans most in need of guaranteed access to health care-people with severe disabilities who are waiting to become eligible for Medicare coverage.

(letter and current list of coalition members is below).

November 12, 2008

Honorable Max Baucus
Chairman
Committee on Finance
U.S. Senate
Washington, DC 20510

Honorable John D. Dingell
Chairman
Committee on Energy and Commerce
U.S. House of Representatives
Washington, DC 20515

Honorable Charles B. Rangel
Chairman
Committee on Ways and Means
U.S. House of Representatives
Washington, DC 20515

Honorable Charles E. Grassley
Ranking Member
Committee on Finance
U.S. Senate
Washington, DC 20510

Honorable Joe Barton
Ranking Member
Committee on Energy and Commerce
U.S. House of Representatives
Washington, DC 20510

Honorable Jim McCrery
Ranking Member
Committee on Ways and Means
U.S. House of Representatives
Washington, DC 20515

Dear Senators/Congressmen:

We thank you for your leadership in addressing the rising cost of health insurance and the increasing ranks of the uninsured. These issues will continue to be important for the 111th Congress and the new administration. We look forward to your leadership in finding solutions to these important national problems.

The undersigned coalition of over 75 organizations works to ensure access to health care for people with disabilities, individuals who are extremely vulnerable to the loss of coverage under our current, fractured health care system. As Congress embarks on reforming America's health care delivery system, we urge you to place a high priority on ending the unjustifiable delay in health coverage for a particular group of Americans most in need of access to health care-people with severe disabilities who are waiting to become eligible for Medicare coverage.

In 1972, Congress extended Medicare coverage to individuals determined by the Social Security Administration (SSA) to have a disability that prevents gainful employment. Since then, Medicare has provided access to health coverage for millions of people with disabilities, allowing them to access the health care they need to lead lives as healthfully as possible. In extending Medicare coverage, however, Congress mandated a two-year waiting period, starting from the date of eligibility for Social Security Disability Insurance (SSDI) benefits, before Medicare coverage begins.

This rule continues to exist despite the potential harm it causes to the health of the 1.5 million people waiting for coverage. Nearly 40 percent of these individuals are without health insurance coverage at some point during their wait for Medicare; 24 percent have no health insurance during this entire period. Many cannot afford to pay COBRA premiums to maintain coverage from their former employer, and private coverage on the individual market is unavailable or too expensive for this high-cost population. The economic downturn makes it difficult for states to extend Medicaid coverage beyond the most impoverished people with disabilities.

The waiting period forces people with severe disabilities to endure two years during which treatment and care of their condition are put at risk. Many forgo medical treatment and/or stop taking medications, compromising their already fragile health and resulting ultimately in conditions more costly to treat when Medicare coverage finally begins.

We ask that your efforts in this Congress to address our country's health care crisis include legislation that would eliminate the delay in health coverage for people with disabilities, ensuring that Medicare becomes available at the time of an individual's SSDI eligibility. No one with disabilities severe enough to qualify for SSDI should be without health insurance.

Advocacy for Patients with Chronic Illness, Inc.
Alpha-1 Foundation
Alpha-1 Association
Alzheimer's Association
American Academy of Neurology Professional Association
American Association of People with Disabilities (AAPD)
American Autoimmune Related Diseases Association
American Cancer Society - Cancer Action Network
ACCSES
American Council for the Blind (ACB)
American Foundation for the Blind
American Network of Community Options and Resources (ANCOR)
American Psychological Association
Amputee Coalition of America
Amyloidosis Support Groups
Arthritis Foundation
Association for Frontotemporal Dementias
Association of Programs for Rural Independent Living (APRIL)
Autism Society of America
Bazelon Center for Mental Health Law
Benign Essential Blepharospasm Research Foundation (BEBRF)
Brain Injury Association of America
Breast Cancer Network of Strength
Center for Medicare Advocacy
CFC International
Children's Tumor Foundation
Crohn's and Colitis Foundation of America
Coalition for Pulmonary Fibrosis
Community Health Charities of America
COPD Foundation
Cystic Fibrosis Foundation
Disability Policy Collaboration
Dystonia Medical Research Foundation
Easter Seals
Ehlers Danlos National Foundation
Epilepsy Foundation
Families USA
HIV Medicine Association
Incontinentia Pigmenti International Foundation
Independence Care System
International Pemphigus and Pemphigoid Foundation
Kennedy's Disease Association
Leukemia & Lymphoma Society
Lupus Foundation of America
MAP Rx
Mental Health America
Medicare Rights Center
Myasthenia Gravis Foundation of America (MGFA)
National Academy of Elder Law Attorneys (NAELA)
National Alliance of State and Territorial AIDS Directors (NASTAD)
National Alliance on Mental Illness (NAMI)
National Association of People with AIDS
National Committee to Preserve Social Security and Medicare
National Council for Community Behavioral Healthcare
National Council on Independent Living (NCIL)
National Disability Rights Network
National Health Council
National Kidney Foundation
National Marfan Foundation
National Multiple Sclerosis Society
National Organization for Rare Disorders (NORD)
North American Brain Tumor Coalition (NABTC)
National Patient Advocate Foundation (NPAF)
NISH
NTM Info & Research
Paralyzed Veterans of America
Pulmonary Hypertension Association
Scleroderma Foundation
Shwachman Diamond Syndrome Foundation
Spina Bifida Association
STARS
The AIDS Institute
The Arc of the United States
United Cerebral Palsy
United Spinal Association
Village Care of New York

The Medicare Rights Center is a national, nonprofit consumer service organization that works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs and public policy initiatives.