Voices in Congress
Voices Matter: Advocating for Breast Cancer Change in US Congress
Visiting office of CA Representative Ted Lieu (CA-36)
On October 8-9th, I joined an incredible group of late stage breast cancer patients & advocates in Congress / Washington DC 🏛️ ✍️ as part of the Stage IV Stampede event organized by METAvivor, a nonprofit focused on metastatic breast cancer (MBC). We continued to push for increased medical research, coverage, and access to change the story for those living with and affected by late stage IV metastatic breast cancer.
Metastatic means that the cancer has spread. Patients survive only 2-3 years on average, quality of life is hard, and there is currently no cure. 30% of early stage BC comes back as metastatic. When people die of breast cancer, it is due to the metastatic nature. Breakthroughs for MBC ALSO benefit the entire BC community; some treatments are already being used in early stages to prevent spread.
About 100 of us hit 74 congressional offices and discussed support for these issues:
RESEARCH: $51B+ for NIH; $2.5B for DARPA-H; more $ for DoD peer reviewed BC research program.
DATA: Fix MBC issue in SEER - nation's cancer database.
PASS THE BILLS: MBC Access to Care Act, Cancer Drug Parity Act. And much more.
We showed faces, connected our personal stories (my wife passed from MBC) to the issues to show why they matter, highlighted disparities and challenges faced by the underserved, and why urgent action is needed now. The offices were welcoming and discussions were deeply moving, because breast cancer doesn't care which side of politics you're on, nor the color of your skin or your beliefs. Though we do have good bipartisan support, we needed them to push the bills past a vote and to the president's desk. It was a privilege to represent the voices of the MBC / BC community, and we felt that good progress and impact were made. Organizations like METAvivor, Komen, and Young Survival Coalition have made advocacy accessible, with opportunities to share your voice and lived experiences to influence change. All of our voices matter, and we need them now, more than ever.
(Disclosure: My wife Janice was diagnosed with MBC just days after our wedding, in our early 30s. Together, we overcame incredible odds for more than 10 years. Aside from running Unicorn with an incredible team, I am also on the board of METAvivor, and am active in the MBC community to support both patients and caregivers.)
Unicorn Cancer Thrivers Foundation is a charity improving the quality of life for those affected by Metastatic Breast Cancer. 100% of donations directly benefit MBC thrivers. Support us with a donation here and help bring hope & healing to the MBC community.
