Long ago (well, maybe 15 years ago) and far away (ok, eight blocks down the street) a single mother was raising four teen-aged children bordering on adulthood, earning her living as a house cleaner when she was diagnosed with breast cancer.
She didn’t have health insurance, so whatever symptoms she had she ignored until she couldn’t ignore it any longer. When she was diagnosed, her doctors offered little hope.
She did her best to continue working until the disease got too much. Her children took care of her until the end. When she died, her children settled her affairs and dispersed. Some got married. A daughter got a job as a bartender and moved into her own apartment. One son had a grandchild she never had the chance to meet. And then another.
At the time, there was no Obamacare, so even if she had made enough money, she couldn’t buy health insurance. In truth, even under the Affordable Care Act, she couldn’t afford it, which meant any care she received was likely funded through charity care at the hospital. And that meant, her doctors didn’t discuss cutting-edge treatment to prolong her life because they wouldn’t be compensated.
And that meant, she had no hope, leading to a grueling and premature death.
Right now there’s a bill before Congress called the Metastatic Breast Cancer Access to Care Act (H.R. 2178). It’s the second time it’s been introduced, sponsored this time by Republican Peter King (NY-2) and Democrat Kathy Castor (Fl-14). A companion bill has also been introduced in the Senate by senators Martha McSally (R-AZ) and Chris Murphy (D-CT) as S. 1374. If passed, it would waive the five-month waiting period for Social Security Disability Insurance and the 24-month waiting period for Medicare coverage.
With a median survival rate of three years, most metastatic breast cancer patients won’t live long enough to receive Medicare under the current regs. That means they die in debt which they leave to their grieving family members or for the taxpayers at large to pay through charity care reimbursements hospitals receive from the government.
A study last year by the American Society of Clinical Oncologists found that 25% of cancer patients also suffer from financial toxicity, meaning they don’t have the money to pay for medical care or household expenses due to their disease. The result: they forego medication, tests and doctors appointments, leading to painful and tormenting premature deaths like the one I’ve described (which is a true story).
“The current safety net system is more tailored to the needs of individuals with chronic and long-term illness that undermines their ability to work, and does not meet the needs of individuals facing catastrophic events and complex ongoing care,” said Michael Kovarik at METAvivor, a cancer advocacy group.
METAvivor is asking people to write to their legislators, asking them to co-sponsor the bills to raise the ante this time that the legislation will pass. So far, it has 101 sponsors in the House, including Republican Brian Fitzpatrick (Pa. -1) in Bucks County. You can bet, I’ll be writing to my congressman, Tom Malinowski, to ask for his support.
In the Senate, it has seven sponsors and none of them are from New Jersey, where I live. You can guess what I’ll be doing as soon as I finish writing this post.
I encourage anyone in the United States reading this to go to http://www.congress.gov and type the bill numbers (H.R. 2178 and S 1374) into the search bar. Click on the bill, then scroll over to the tab that reads “co-sponsor” and click there to find out if your legislator is a co-sponsor. If you don’t have your rep’s contact info, you can go to http://www.house.gov or http://www.senate.gov, type in your zip code and their information will pop up.
METAvivor has made it easy for us by providing this script:
 I write today as a constituent and as an advocate for the metastatic cancer community to ask that your office please cosponsor the bipartisan Metastatic Breast Cancer Access to Care Act (H.R. 2178 f or S 1372). This common sense legislation would fast track disability and healthcare benefits (the current waiting periods are a major challenge for many affected individuals and families). 

If you’re writing to your congressman or woman, add: To cosponsor H.R. 2178, please reach out to Deena Tauster in Cong. Peter King’s office at [email protected]mail.house.gov or 5-7896 or Elizabeth Brown in Cong. Kathy Castor’s office at [email protected] or 5-3376 

If writing to your senator, add: To cosponsor S. 1374, please reach out to Emily Crow in Sen. Martha McSally’s office at [email protected]mcsally.senate.gov or 4-2235 or Elizabeth Darnell in Sen. Chris Murphy’s office at [email protected]murphy.senate.gov or 4-4041.

While I’d add that this law should cover anyone diagnosed with metastatic cancer, this is the first step.  Those of us living with this disease thank you for your support.  If you’re waffling at all about taking action, I remind you of this poem written in 1946 by German Lutheran pastor Martin Niemoller:
First they came for the socialists, and I did not speak out—
Because I was not a socialist.

Then they came for the trade unionists, and I did not speak out—
Because I was not a trade unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me

Liz Johnson

Liz Johnson

Writer. Blogger. Advocate. Breast Cancer Conscript.