BCAM: October 22nd

Did you know that Metastatic Breast Cancer (MBC) patients need to wait five (5) months after a terminal diagnosis to be eligible to receive social security? And then another twenty-four (24) months after eligibility for social security to receive Medicare?

Here’s how Adiba highlights the issue …

In 2019, for the annual Metavivor Stampede, I traveled to Washington DC with my husband and a large group other MBC cancer-havers from Florida to advocate for the passage of HB2178 and SB1374, titled the Metastatic Breast Cancer Access to Care Act, which would eliminate the waiting periods for Social Security and Medicare for those of us diagnosed with MBC. There is already a waiver for those individuals with ALS (a/k/a Lou Gehrig’s disease) and it makes perfect logical sense to extend the same accommodation to other diseases. Eventually, I believe everyone with metastatic cancer should have the same waivers.

This year, the Metavivor Stampede was virtual and, once again, the large Florida team spent hours and hours of time talking to far more elected officials than we ever managed in one day in person, a major silver lining of this pandemic. We all missed seeing each other in person and the staffers who just called in rather than showing their face certainly weren’t as affected. There is just something about hearing a story while you can see the face of the person talking.

The Stampede included a few other initiatives, like increased funding for MBC research, updating the SEER database to count us correctly (more on that later) and another bill that would eliminate some of the headaches and confusion for patients in selecting a location and modality to get their life saving medication. These grass roots initiatives can seem like a long shot; at the same time, so few people take the initiative to meet with their elected officials and our stories matters.

There’s always room for following up with health care staffers, so if you want to help, let me know and I’ll get you hooked up to the right people for information!!

And now you know more about the hurdles to get care that MBC cancer-havers face.

10 thoughts on “BCAM: October 22nd

  1. I I was one who had to wait 5 months to get DISABILITY social security. What’s worse is waiting another month to be old enough for Medicare to kick in AND finding a pharmacy plan that a) has my cancer drug and 2)doesn’t charge me $12,000 a month. Do they want me broke? Or dead? Or both?

    Liked by 1 person

    1. That’s exactly how I feel, that the delays are to save money because they know it will weed out a lot of people. I’m sure they would say that the wait times are to combat fraud and make sure a diagnosis is accurate, but still.


  2. Good work. My ex was on disability for neuropathy and had what from other stories was incredibly easy time getting it. I knew it you were diagnosed with terminal illness you were approved. Any waiting period is ridiculous. And the waiting period for medical is even more so. It’s not as if people are getting rich and have the money for the medical. I suppose one might qualify for other programs.

    Liked by 1 person

    1. I agree, the wait times are unconscionable generally and I’m hopeful that the legislation will be seriously considered especially in light of the attacks on the ACA. Other programs are often difficult to qualify for and require a different set of circumstances than most are in, so it’s just a broken system generally.


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