Metastatic Breast Cancer: Access to Care and Why It Matters

"We've lost three rental homes and a motorhome because I don't work due to stage 4 breast cancer. I've hired an attorney. I've gone to a hearing and received partial disability. We've asked for a reconsideration and I'm still waiting ... I've been fighting this for four years." - Carrie, Maryland

"During that two-year waiting period for Medicare, I completely cleaned out every dime I had in my small savings, I moved in with family and I lived off credit cards, accumulating quite a hefty debt. I was paying $500 to continue my personal insurance policy and then the normal cost of living (rent, food, transportation, gas). I emptied the bank and ran up thousands of dollars in debt before the [five-month] waiting period was up. Even once I finally began receiving my disability payments, it was only a small amount (compared to full-time salary) and my first priority was paying the $500 monthly premium for my insurance to continue ... [Now], they deduct the cost of my Medicare premium from my already meager disability check, then I have to use what's left for my personal insurance policy. Whatever's left after both of those costs, I get to live off of. It's a sad system but I'm stuck." - Tia, Nevada

"I had to do whatever it took to support my family (I'm a single mom) and had to get a job while undergoing radiation and having bad bleeding because I was already showing symptoms of MBC, but I had no insurance to be sent to a gynecologist ... To me it is very stressful, and I cannot even have savings or a decent job to cover my expenses. In my case, also, the waiting period delayed my treatment and my quality of life ... I feel very angry and frustrated because we should be able to get the benefit as soon as we are diagnosed so we can at least get rid of the financial and medical stress and have a little bit of quality of life before we pass. Some of us get the benefit after passing." - Natalia, Florida

These are quotes I gathered from women I know who have metastatic breast cancer.

I haven't had to navigate the ins-and-outs of Social Security Disability Insurance (SSDI) but I've met many people with metastatic breast cancer, like those quoted above, whose lives have been upended, harmed and irreparably changed because of the system that is currently in place for nearly anyone who needs this support. As you read their stories again, keep in mind that each of these women worked until, and sometimes into, their stage 4 diagnosis. They had earned these benefits.

Their stories are the horrifying tales that are all-too-easy to turn away from with a "That could never happen to me" or a "She must have done something wrong." Lost homes, neglected treatments, bankruptcy, debt, death. And all of this within a vulnerable population with an average life expectancy at diagnosis of just 36 months.

Applying for SSDI is a complicated process that looks at your work history, work income, living situation, etc. and, in the case of metastatic breast cancer, your diagnosis and prognosis. Because a stage 4 diagnosis limits life expectancy and can affect ability to work, the disability designation often happens quickly.

Easy, right?

You'd think so, but you'd be wrong. In fact, once you receive the "OK" to benefits, there's a five-month waiting period before you receive the financial benefits of SSDI (called SSI) and then a 24-month waiting period before you can access health insurance coverage through Medicare. That delay in receipt of benefits means that many people die while waiting. In late 2017, the Washington Post reported that 10,000 people died that year while waiting for a decision on their benefit claims. That wait for an initial decision extended to nearly 600 days — 600 days in addition to the five-month and 24-month waiting periods.

The problem with the waiting period is not new. In 2008, J. Leonard Lichtenfeld, M.D., MACP addressed the topic in a blog for the American Cancer Society. A decade later, most people needing this assistance are in an even worse situation since the backlog for a decision has increased.

But there's a very real chance for change. Spearheaded by the National Breast Cancer Coalition (NBCC), the Metastatic Breast Cancer Access to Care Act, at time of writing co-sponsored by 45 Representatives, seeks to eliminate both the five-month and the 24-month waiting periods for metastatic breast cancer patients. The legislation is not unheard of, since people diagnosed with amyotrophic lateral sclerosis (ALS) were given automatic access to medical coverage in 2001 and, with a limited life expectancy of two to five years, according to the ALS Association, the NBCC and its affiliated members assert that metastatic breast cancer patients need similar legislation.

Jennifer Berzok, of NBCC, says that this legislation is the latest push in many years of efforts to get broader coverage for all Americans.

"It is narrower in focus," she said to me last week. "But the NBCC thinks it is important. This is the right thing to do. In the last months of life, a person should not be worrying about losing her house because of a waiting period for benefits she has been deemed eligible for."

There are ways to support the legislation as a patient, caregiver, or concerned citizen:

* Go to NBCC website http://www.breastcancerdeadline2020.org/get-involved/take-action/join-with-us-to-end-breast-cancer-by-2020/ to register for alerts and policy advocacy specifics.

* Visit Triage Cancer for a current list of social media handles for your legislators http://triagecancer.org/congressional-twitter-handles and information about policy advocacy.

* Tell your story Says NBCC Jennifer Berzok, "Patient stories are the most important tool. Find out who your representative is and tell them your personal story. This matters to us and it matters to Congress because these patients are voters."

* Check out this list NBCC has provided a detailed list of other important steps you can take to get this legislation passed at http://www.breastcancerdeadline2020.org/get-involved/public-policy/action-center/august-recess-2018-grassroots.html

Do it today!