by Linda Hansen
In this country alone, a person dies of metastatic breast cancer (MBC) every 13 minutes. When you hear that someone died of breast cancer, they died of MBC. There is no cure for MBC; treatment continues until you die. Only 22 percent of people diagnosed with MBC will be alive five years after diagnosis. Half of the people diagnosed with MBC will be dead by three years after their diagnosis. The years between diagnosis and death from MBC are spent in a constant cycle of tests, chemotherapy and its debilitating side effects, radiation, surgery, and appointments with health care professionals. The side effects get worse as more drugs are used to try to keep the cancer at bay.
Almost all Americans with private health insurance have that coverage through their employer. As of 2020, 87 percent of full-time year-round workers had private insurance through their employer. This reliance on employer-based health insurance can be devastating for people with MBC, as we lose our health insurance just as we lose our ability to work. And all of us with MBC will eventually lose the ability to work.
The only way to qualify for Social Security Disability Insurance (SSDI) payments is to have a history of work in a job covered by Social Security and be declared totally unable to any type of work for which you are qualified. In other words, if you worked in a job in which you paid into Social Security but are no longer able to do any type of work, you qualify for SSDI. The amount of money that you get depends on the amount of money that you paid into the Social Security program. That amount is capped at $3,345 in 2022.
Now comes the tricky part. If you qualify for SSDI, your monthly payments do not begin for five months. That means five months without income. Even worse, your health insurance ended when you lost your job, and without any income, COBRA benefits may be out of reach. And worse yet, there is a 24-month waiting period until you are eligible for Medicare unless you are over 65. That means that people with MBC lose the ability to work, lose their jobs and health insurance and have five months without income and 24 months without health insurance. All of this when they have entered the world of nearly one million dollars a year of health care costs. Many of the people totally disabled by MBC won’t live long enough to start Medicare despite paying into the Social Security system for most of their lives.
The Metastatic Breast Cancer Access to Care Act (S. 1312, H.R. 3183) is an effort to permit patients with MBC, and an appropriate work history, to automatically qualify for SSDI benefits upon diagnosis. It also waives both the 5-month waiting period for monthly benefits and the 24-month waiting period for Medicare. The bill has bipartisan support but has been stalled in congress for a year. We need action now. Every day without passage of this bill means that more families are losing everything to a terminal disease that they did nothing to get. The best way to get Congress to pass the MBC Access to Care Act is for the rest of us to tell their representatives that it matters. Your phone call or email to your representatives could be all that it takes to make sure that people with MBC aren’t financially devastated by this disease and have access to the care they need.
Linda Hansen is a breast cancer advocate and WBCC Policy Committee member.