Photo by Miguel Á. Padriñán:

Hundreds of Susan G. Komen® advocates told members of Congress they cannot wait any longer to receive federal financial help and health coverage while they’re fighting terminal breast cancer. The pending Metastatic Breast Cancer Access to Care Act (H.R.3183/S.1312), which is overwhelmingly supported by Democrats and Republicans in the House and Senate, removes unnecessary and burdensome waiting periods for these benefits.

Metastatic breast cancer (MBC) is breast cancer that has spread beyond the breast, most often to the lungs, brain, bones and liver. It is terminal. Current law requires people diagnosed with MBC to wait five months for Social Security Disability Insurance and an additional 24 months for Medicare coverage. Time is a privilege that many people living with terminal breast cancer don’t have.

“Fighting for your life after a terminal breast cancer diagnosis is hard enough but doing it without the financial means and necessary health coverage is nearly impossible. No one should ever be in this situation,” said Molly Guthrie, Vice President, Policy and Advocacy at Susan G. Komen.

Survival rates for someone diagnosed with MBC varies, though the average survival rate is just three years post diagnosis. Treatments cannot save lives, but they can maintain quality of life and extend life, until they ultimately stop working. Of the nearly 44,000 breast cancer deaths that will occur in the U.S. this year, the majority will be from people living with MBC.

Due to the aggressive nature of some treatments for MBC, people often cannot manage the side effects and also continue to work. Komen hears from people every day who had to quit their jobs and lost their income and health insurance and cannot make ends meet. It is not uncommon for the monthly cost of MBC treatments to be thousands of dollars, making health insurance essential.

“I have metastatic breast cancer that will end in death. I didn’t really have any money saved up, and I didn’t realize that it was going to be this long wait. That’s just crazy,” said Lisa Mayer, who had to quit her job after being diagnosed with MBC in 2016.

Added Janet Ramsey, “I’m going to max out my charge cards paying for my treatment. I don’t care if I have bad credit because I’m not going to live long enough to buy something else.” Janet has been living with MBC for two years.

Congress has previously eliminated the same five- and 24-month waiting periods for Social Security Disability Insurance and Medicare coverage for people diagnosed with end-stage renal disease and amyotrophic lateral sclerosis (ALS).

“You’re asking people with MBC to wait when they’re living with an incurable disease, and they might not even make it through the waiting period. That’s the reality of it. Give them the help now,” said Lesley Glenn, who has been living with MBC for 10 years.

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