Metastatic breast cancer is cancer that has spread from the breast to the bones, lungs, or other distant parts of the body; 90 percent of breast cancer deaths are a result of metastatic disease. While some treatments have extended survival for those with metastatic breast cancer, there is no cure. The life expectancy of those diagnosed with metastatic disease is, on average, three years.
The Metastatic Breast Cancer Access to Care Act (H.R. 549; S.663) would waive the lengthy and arbitrary waiting periods for Social Security Disability Insurance benefits (5 months) and Medicare (24 months) faced by eligible individuals with metastatic breast cancer.
Below, hear from those who have been affected by these waiting periods and learn how earlier access to benefits could have changed the rest of their lives– and learn how you can take action to help pass the bill.
Catherine was initially diagnosed with breast cancer in 2009, just five years after her mother, long-time NBCC advocate Joanne, received her own diagnosis. Catherine then deepened her engagement with NBCC, graduating from Project LEAD in 2010 and attending several Advocate Leadership Summits and Lobby Days.
In 2018, Catherine’s cancer metastasized to her bones, and soon after, to her brain. The resulting lymphedema made traveling too difficult, and an inability to travel meant losing her career in continuing medical education.
Now lacking employer-sponsored insurance, Catherine found it difficult to secure other health coverage. Without insurance, Catherine’s metastatic diagnosis was delayed, and clinical trials were out of reach.
Catherine eventually transitioned to a career as a paralegal and worked in insurance to help people access the right insurance plans for their needs. And alongside her mother Joanne and other New York advocates, she continued to fight for quality health care for all.
Passing the Metastatic Breast Cancer Access to Care Act was personal to Catherine. Access to health care coverage through Medicare may have lengthened Catherine’s life, eased her pain, and reduced financial hardship.
Instead, Catherine passed away on December 2, 2020, at the age of 48, just one day after her two-year waiting period was up and she qualified for Medicare.
Rebekah was diagnosed with stage 1 breast cancer in 2015 at age 31. A lethal, metastatic diagnosis came just six months later.
By 2019, the cancer had spread to her brain and after several operations, she was no longer able to work. The Consolidated Omnibus Budget Reconciliation Act (COBRA) allowed her to keep her health insurance for a short period of time, but the $2,000 monthly payments were beyond her reach, and she sought assistance to cover them.
When your medical bills total $900,000 annually, insurance is an absolute necessity. But when her COBRA coverage ended, Rebekah had to wait another six months for her Medicare eligibility to kick in.
“It’s literally a matter of life or death and unnecessary waiting periods only exacerbate that,” Rebekah said.
Rebekah died from complications of metastatic breast cancer in 2021, leaving behind a teenage son.
Before NBCC advocate Ellen completed her initial breast cancer treatment, doctors discovered the disease had metastasized to her bones.
Unable to work at either of her two jobs—Ellen was a registered nurse for 25 years and worked as an assistant at a fitness center—both employers let her go after a year, leaving her with no income and no insurance.
Ellen applied for Social Security Disability Insurance and Medicare, but she had to wait for two years to become eligible for those much-needed health care benefits.
Ellen spent the final year of her life not just battling a deadly disease, but living in constant fear of losing her home and worrying about her beloved dog’s well-being because she could not pay her bills.
She died of metastatic breast cancer at age 47, before becoming eligible for Medicare.
Danielle first noticed a lump in her breast in December 2019. By January 2020, it was growing—and so was her concern. But the looming COVID-19 pandemic kept her from receiving care until October. When she was finally able to see a doctor, the news wasn’t good: Danielle was diagnosed with invasive ductal carcinoma.
Danielle received a double mastectomy, chemotherapy, and radiation. But as the pandemic persisted, “life continued to slow down, and stand still, and stop. And so did work, and we lost our insurance,” Danielle told the Alamo Breast Cancer Foundation’s Jerry Worden.
Without insurance, Danielle could not continue her treatment. So Danielle, her husband Michael, and their young daughter Evelyn packed up their lives and moved to Texas to seek work and with it, health insurance.
Michael quickly got a job, but it would take several months for his benefits to start. Danielle was in extraordinary pain. An emergency room doctor confirmed her cancer was now metastatic.
Treatment could prolong Danielle’s life and give her a better quality of life, doctors said. Without it, she would likely live only six months. But with medication costing $40,000 a dose, Danielle and her family simply could not afford it without insurance.
Hospital staff helped Danielle apply for Medicare and told her they would be in touch. Weeks went by, and Danielle heard nothing about her application. In the meantime, her family’s self-pay insurance kicked in, and she rushed to see a doctor. “You have this six-month ticking time bomb, right?” Danielle said.
Then Michael was laid off, leaving the family right back where they started: with no insurance and increasing financial insecurity. A caseworker told Danielle that, despite her shrinking six-month prognosis, she’d hear about Medicare in two years due to the mandatory waiting period.
“My life is ending,” Danielle said. “I don’t have two years.”
If Danielle could access care, that could mean more family memories, more time together, and more milestones with Evelyn.
“I spent my Mother’s Day looking at my daughter and just saying ‘this is so stupid.’ I’m trapped between this rock and this hard place. This could be my last one, and it doesn’t need to be,” Danielle said. “I know I’m not going to get a million years, but I would at least like to have enough moments with my daughter so that she can know me and remember me and know how much I really loved her.”
Patients with metastatic breast cancer “need a fast track” to benefits, Danielle said. The Metastatic Breast Cancer Access to Care Act would provide that.
NBCC urges Congress to enact legislation to amend the Social Security Act to eliminate waiting periods for disability insurance benefits and Medicare coverage for eligible individuals with metastatic breast cancer.
Take action to help pass the Metastatic Breast Cancer Access to Care Act today.