The government must act now to improve the lives of people with terminal breast cancer

Every two minutes, a woman is diagnosed with breast cancer—and sadly, for many of those women, the disease will be terminal. Families receiving that devastating diagnosis face enough challenges without the added burden of long and arduous waiting period for health benefits.

The time for change is now.

Nearly 200,000 women and men across America are living with terminal breast cancer. They’re fighting for their lives. They’re fighting for more time with their loved ones. They’re hoping they live long enough — a combined 29 months under current federal law — to receive support in the form of Social Security Disability Insurance (SSDI) and Medicare.

The sobering truth: Some of these individuals will die before they receive a Social Security check, and most of these individuals will die before receiving Medicare coverage. Congress has an opportunity—and a moral obligation—to improve the lives of hundreds of thousands of women and men fighting terminal breast cancer by removing the five-month waiting period for SSDI and the additional 24-month waiting period for Medicare coverage.

The time to act is now. That’s why we’re advocating for the immediate passage of the Metastatic Breast Cancer Access to Care Act (H.R. 3183/S.1312). Congress has already eliminated waiting periods for people living with amyotrophic lateral sclerosis (ALS) and end-stage renal disease, and it’s time to do the same for terminal breast cancer.

As a father, I’ll never forget the day my otherwise healthy, 29-year-old daughter was diagnosed with Triple Negative Breast cancer, which quickly became terminal. She was fighting as hard as she could to spend more time with her husband and two infant children. She lost her life at the age of 31, only 18 months after her diagnosis of metastatic breast cancer. She is just one example of someone living with this disease that wouldn’t survive the 29-month waiting periods.

As a daughter, I watched my mom fight the very best fight she could against terminal breast cancer. She was fortunate to have health insurance and the financial means to pay for her care, so she could focus on living as long as possible. I didn’t have to worry about her making ends meet, but it is something I think about in my own life. I’m a breast cancer survivor and terminal cancer runs in my family. I think about my future and wonder if my breast cancer will come back, if it will be terminal and if I’ll be able to pay for the care I need.

About 30 percent of people living with terminal breast cancer live five or more years after diagnosis, and the average survival rate is only three years. They don’t have the luxury of waiting for the health care they need to make their final days more bearable. Their loved ones should not be forced to choose between paying for their care or paying the mortgage. Or making a car payment. Or sending a child to college.

It is not uncommon for treatment for terminal breast cancer to cost between $8,000 and $10,000 a month—hundreds of thousands of dollars a year, if the patient is lucky to survive that long. The financial burden and devastation of the disease is great. The need for immediate government action is even greater.

We urge Congress to pass this legislation now and ensure those facing a late-stage diagnosis don’t have to wait any longer for the care they need.

Most of the 44,000 breast cancer deaths in the U.S. this year will be from terminal breast cancer. Passing this legislation would tell those men, women, and families: you are not alone.

Joe Morelle represents New York’s 25th District and lost his daughter, Lauren, to terminal breast cancer in 2017. Schneider, a breast cancer survivor, is the president & CEO of Susan G. Komen.