The 118th Congress is currently in the second year of its 2-year session. If a bill does not pass by the end of this year, it will have to be reintroduced come January 2025. One bill of utmost importance that is currently in its third congressional session is the Metastatic Breast Cancer Access to Care Act (H.R.549/S.663). Time is of the essence to ensure that this time, in this Congress, this bill becomes law. 

The Metastatic Breast Cancer Access to Care Act – a bill with bipartisan support – would waive the 5-month wait period for Social Security Disability Insurance (SSDI) and the subsequent 2-year wait period for Medicare for those with metastatic breast cancer (MBC) who are under the age of 65 and at the point of disability due to disease or treatment. These wait periods have already been waived for those with ALS and end-stage renal disease.

In the United States, 1 in 8 women will be diagnosed with breast cancer in their lifetime. The median age of diagnosis is 62 years old.¹ Of those women, 1 in 3 will develop metastatic disease, meaning that the cancer has spread to other organs beyond the breasts and lymph nodes.² At the point of metastatic diagnosis, the patient already qualifies for disability under the Social Security Disability Description Adult Listing of Medical Impairments (13.10). Many people continue to work for years, paying into SSDI and Medicare, but when the disease or treatments become too much, their 5- and 24-month wait periods start.

With an estimated 168,000 women currently living with MBC in the United States³, these wait periods are a cruel reality for many. On top of dealing with the physical, mental, and emotional tolls of a metastatic diagnosis, survivors are now forced to face the threat of losing their health insurance coverage and pay exorbitantly steep out-of-pocket costs.

This was exactly Nancy G.C.’s experience. Nancy was diagnosed with triple negative breast cancer in 2015, which became metastatic two years later. As her employment was her family’s primary source of income and health insurance, she continued working for as long as she could until becoming fully disabled. At 61 years old, Nancy entered the 2-year wait period for Medicare.

“My employer-sponsored health insurance stopped several months before my Medicare benefits began, forcing me to rely on health coverage through the Consolidated Omnibus Budget Reconciliation Act (COBRA),” shares Nancy. “Between my COBRA insurance premium of approximately $1800.00 per month and the high out-of-pocket expenses for services it entails, these costs almost bankrupted our family.”

Nancy describes herself as “one of the lucky ones,” acknowledging that many individuals diagnosed with metastatic breast cancer do not survive the two years it takes to get Medicare coverage. On average, only around 30% of women diagnosed with MBC will live 5 years after receiving a metastatic diagnosis.⁴  Additionally, racial disparities exist in breast cancer mortality, disproportionately impacting women of color.⁵

Sadly, Nancy’s experience as a metastatic breast cancer survivor under the age of 65 is not unheard of in the United States. This begs the simple question: Why? Why must there be wait periods for health insurance coverage after someone with a terminal disease has reached the point of disability? Why must they be forced to wait when they may not survive the wait itself?

H.R.549/S.663 has remained in the House Committee on Ways & Means – without any movement – since January 2023. Congresswoman Claudia Tenney, whose district covers much of the Finger Lakes Region, is a majority member in this committee. Currently, she is not a cosponsor of this bill, but as a majority member, she is a key stakeholder in moving this legislation forward.

Those living with metastatic breast cancer in Congresswoman Tenney’s district implore her to cosponsor H.R.549/S.663 without delay, as it is absolutely essential to ensure their best quality of life. The Coalition has been a stalwart supporter of this legislation for several years and will remain a staunch advocate until it becomes law – because that is what Nancy and so many other survivors like her deserve.

1. https://www.cancer.org/cancer/types/breast-cancer/about/how-common-is-breast-cancer.html
2. https://www.metavivor.org/mbc-prep/metastatic-breast-cancer-statistics/
3. https://www.nationalbreastcancer.org/metastatic-breast-cancer/https://www.cancer.org/cancer/types/breast-cancer/understanding-a-breast-cancer-diagnosis/breast-cancer-survival-rates.html
4. http://www.bcrf.org/blog/black-women-and-breast-cancer-why-disparities-persist-and-how-end-them
5. http://www.bcrf.org/blog/black-women-and-breast-cancer-why-disparities-persist-and-how-end-them