Thank you, Chairman Larsen, Ranking Member Reed, and Members of the Ways and Means Subcommittee on Social Security, for the opportunity to submit testimony to the record of the hearing this Committee held on June 15, 2021: “Equity in Social Security: In Their Own Words.”
My name is Fran Visco, and I am a breast cancer survivor, a wife and mother, a lawyer, and President of the National Breast Cancer Coalition (NBCC). My testimony represents the hundreds of member organizations and thousands of individual members of the Coalition. 21 state and local organizations have signed onto this testimony along with NBCC. NBCC is a grassroots organization dedicated to ending breast cancer through action and advocacy. The Coalition’s primary goals are to increase federal funding for breast cancer research and collaborate with the scientific community to implement new models of research; improve access to high-quality health care and breast cancer clinical trials for all women and expand the influence of breast cancer advocates wherever breast cancer decisions are made.
We are testifying in support of HR 3183, the “Metastatic Breast Cancer Access to Care Act,” which Representatives Kathy Castor and John Katko recently re-introduced. This legislation would waive all waiting periods for Medicare and Social Security Disability Insurance (SSDI) eligibility for individuals with metastatic breast cancer. The bill was introduced only a month ago and has already garnered the support of more than 100 bipartisan Members of the House of Representatives, many of them members of your committee.
As you know, eligible individuals with disabilities other than End-Stage Renal Disease (ESRD) and Amyotrophic Lateral Sclerosis (ALS) must wait five months before receiving Social Security Disability Insurance (SSDI) and 24 months before gaining eligibility for Medicare. These waiting periods include individuals diagnosed with metastatic breast cancer.
Metastatic breast cancer is cancer that has spread from the breast to the bones, lungs, or other distant parts of the body. 90% of breast cancer deaths are a result of metastatic disease. There are treatments, some of which have extended survival for women and men with metastatic breast cancer. There is no cure.
In 2021, in the United States, about 281,550 women will be diagnosed with invasive breast cancer, as will 2,650 men. About 62,930 new cases of carcinoma in situ (CIS) will be diagnosed. This year, over 43,600 women and 530 men will die of breast cancer. There are approximately 168,292 women in the United States today living with metastatic breast cancer (MBC). it is estimated that 20-30% of women with breast cancer recur with metastatic disease and 6-10% are diagnosed initially with metastatic breast cancer. The average age of breast cancer diagnosis is 62, the average age of death from breast cancer is 68. The average life expectancy of an individual with metastatic breast cancer is three years.
There is no substantive reason to impose waiting periods on women and men who suffer from a lethal disease that has no cure. There are federal precedents for eliminating waiting periods for individuals who qualify for SSDI and Medicare benefits based on their disability. In 1978, Congress eliminated Medicare waiting periods for individuals with End-Stage Renal Disease (ESRD) receiving home dialysis treatments. In 2001, Congress passed legislation to add ALS as a qualifying condition for automatic Medicare coverage, eliminating the 24-month waiting period. In 2020, Congress passed legislation to eliminate the five-month waiting period for individuals who qualify for SSDI based on their disability.
While we must do more to encourage new treatments and cures, increase access to medical care, reduce health disparities, and raise awareness for patients with MBC, eliminating onerous waiting periods for Social Security Disability Insurance and Medicare is a meaningful step for women and their families. Since the average life expectancy for women diagnosed with MBC is only three years, we must eliminate barriers that could delay necessary treatment.
Enacting legislation that would waive the waiting periods for individuals diagnosed with metastatic breast cancer who meet the criteria for SSDI and Medicare is a priority for NBCC. We want to prevent stories like that of Ellen Kay Duffy, a 47-year old nurse from Cedar Falls, Iowa, diagnosed with metastatic breast cancer, who died waiting for her Medicare benefits to begin. Or Catherine Marquardt of New York who received her Medicare benefits just one day prior to her death from metastatic breast cancer. Individuals like Ellen and Catherine should not have to wait to access the healthcare they have already qualified to receive. There are too many others with similar stories.
We are aware of various proposals introduced in Congress to address the issue of waiting periods on a comprehensive basis. While we welcome the opportunity to work with Members of Congress on legislation to expand timely access to high-quality healthcare to all individuals, we also know that attempts to fix the problem of waiting periods are specific to different diseases with varying needs. The notion that we can’t help anyone until we help everyone is not a valid, timely, or compassionate approach. For individuals with metastatic breast cancer, time is of the essence. They do not have time to wait for benefits for which they already qualify and so desperately need. HR 3183, which has strong bipartisan support and tremendous political momentum from across the country, should not be delayed because of the desire to enact broader reform.
Thank you for allowing us to submit testimony for the record. We ask that you support the Metastatic Breast Cancer Access to Care Act and bring it before the Committee as soon as possible. In the meantime, we look forward to continuing to partner with you to ensure all individuals have access to the quality care they deserve.
National Breast Cancer Coalition
Annie Appleseed Project (FL)
Breast Cancer Care and Research Fund (CA)
Nueva Vida (VA)
Dr. Susan Love Research Foundation (CA)
Alamo Breast Cancer Foundation (TX)
Minnesota Breast Cancer Coalition (MN)
Association of Cancer Patient Educators (CA)
Wisconsin Breast Cancer Coalition (WI)
Virginia Breast Cancer Foundation (VA)
Babylon Breast Cancer Coalition (NY)
Oncology Nursing Society (MA)
CARE Advocates Network (MA)
Cedar Valley Cancer Committee: Beyond Pink TEAM (IA)
Splash of Color Breast Cancer Support Group (IA)
Breast Cancer Recovery (WI)
Breast Cancer Over Time (CA)
The Community Health Center, Inc. (CT)
New Hampshire Breast Cancer Coalition (NH)
Young Survival Coalition (NY)
Pink Table Talk (WI)