Advocacy in Action
Photo credit: Macy Alex Photography
The difference between a death wish and life support
Let’s chat over a cup of coffee.
As my advocacy purpose takes shape, I have actively searched for opportunities to make my voice heard as a metastatic breast cancer survivor and warrior. I was recently selected to be a Hear My Voice advocate for Living Beyond Breast Cancer. This is a national nonprofit organization that provides financial support to breast cancer patients and does not fund early detection or awareness campaigns. We have enough of those already.
What makes them different from other organizations is that 30% of their funding is dedicated to metastatic breast cancer research and patient support.
Yep … that’s right … 30% of their $7 million annual budget is earmarked for metastatic breast cancer support. Not awareness, not early detection … actual financial grants for patients and funding for research to provide better treatment options that will hopefully lead to a cure.
Living Beyond Breast Cancer has a 7-tier advocacy approach:
Personal Advocacy–advocating for yourself (getting second opinions, emotional and social support, education activities)
- Community Advocacy–help a friend through their diagnosis; conduct community outreach; share information with health providers
- Organizational Advocacy–share information about a cancer advocacy organization; become a volunteer; raise funds for an organization
- Media Advocacy–write a blog or article on cancer-related advocacy; give an interview about your cancer experience; use social media to talk about your experience
- Scientific Advocacy–advocate for research funding; attend scientific conferences as a patient advocate; participate in a clinical trial or answer a survey
- Policy Advocacy—change policies with your employer, school, hospital, etc; contact your elected officials to share your story and/or advocate for a particular issue; testify for a legislature about a policy issue
- Legislative Advocacy—working to achieve a legislative outcome such as a law, budget, or resolution; meet with a federal, state, or local elected official to advocate for an issue or piece of legislation; attend a cancer organization’s state or federal lobby day
When I first saw the list, I breathed a sigh of relief because I’m already doing many of those things!
Then I thought … wait a minute … I need to challenge myself to grow and choose another advocacy mission that will stretch me.
So I chose to get involved with Policy and Legislative Advocacy work.
Let’s explore why I chose those two!
Death Wish—government style
When I was unable to return to my job and had to apply for Social Security Disability, I quickly learned a very disturbing lesson. Our federal disability and insurance programs feel like they are designed to wait for me to die rather than support me to live.
Read that again. Our federal Social Security Disability program makes me feel that they would rather wait for me to die before I collect any benefits.
There is something called the “compassionate care allowance” for Social Security Disability that fast-tracks the approval process for disability due to a terminal illness. (Remember, Stage 4 cancer is considered terminal because it’s not curable).
My disability claim was approved within four weeks, even during one of the government shutdowns. However, I have to wait five months before receiving my first payment.
Yeah … FIVE MONTHS with no income, even though there is plenty of documentation that I can no longer work in my career and have no income outside of disability.
And then I have to wait two years before I can go on Medicare for medical expenses. That means I have to either find and pay for my own insurance or go without for two years.
That’s just WRONG.
In my opinion, the reason that the five-year survival rate for metastatic breast cancer is only 30% is because so many people cannot afford insurance or medical care. They are no longer receiving treatment for their terminal illness.
And THAT is why we are dying at a 70% rate over a five-year term.
Life Support
There is legislation pending that needs action now. It’s called the Metastatic Breast Cancer Access to Care Act, SB 3442, introduced in December 2025. This bill would eliminate the 5-month waiting period for Social Security Disability benefits to be paid after approval, and it would also eliminate the two-year waiting period to become eligible for Medicare.
This bill could save lives and drastically reduce mortality rates by allowing the 100,000+ metastatic breast cancer warriors to have quicker access to income and Medicare benefits. This would be a lifeline for those who cannot afford to go five months without any income and cannot afford to purchase health insurance on their own.
Call to action
I know …. you are asking yourself, “Debbie, that sounds great, but how can I help?”
Great question!
You can contact your US Senators and House Representatives to let them know you support SB 3442. Use my story if you want.
The link to find your Congressional staff is here: https://www.usa.gov/elected-officials
Now that you have the information to make an impact, you know what to do next …
Go forth. Be exceptional!
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For any inquiries, please contact:
Email [email protected]
Website www.goforthpurpose.com
