Navigating Congress During Shutdown
Breast Cancer Advocacy @ Scale in Congress 🏛️ During the Shutdown
Wang w/ METAvivor advocates at Senator Adam Schiff’s office. (Photo Credit: METAvivor)
On October 6-7th, 2025, I joined an incredible group of late stage breast cancer (BC) patients & advocates in Washington DC 🏛️ to speak to Congress ✍️ 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, or affected by, late stage IV metastatic breast cancer.
Metastatic means that the cancer has spread. Survival is only 2-3 years on average, quality of life is hard, and there is currently no cure. 1 in 3 women with early stage BC end up 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.
"But isn't the government shut down? There's no one there, and it seems so dangerous!" Did we want to send patients to DC for no reason? We thought the same and were so close to canceling the event. Fed by insights from local connections & seasoned lobbyist partners, conviction, and a plan B (summit), we went ahead at the 11th hour.
The government may be down, but metastatic breast cancer never rests. And neither do we (as advocates).
We were right. Most offices stayed open (though staff was unpaid). With no one else around, our group had a unique opportunity and had the full attention of our lawmakers....
And so on Day 1, we trained, and on Day 2 - 76 patients and advocates marched to the Capital lawn for a remembrance honoring loved ones taken by MBC. Deeply humbled and motivated, we then hit 78 congressional offices and discussed support for our urgent issues:
🌱 FUND RESEARCH: $51B for NIH; $1.5B for ARPA-H; restore $150M for DoD peer reviewed BC research program. (Worst case - keep even with last year.)
✍🏼 PASS THE BILLS: MBC Access to Care Act (HR2048), Cancer Drug Parity Act (HR4101).
🔧 FIX THE DATA: Fix MBC data quality issues in SEER - the nation's cancer database.
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 had decent bipartisan support, we needed more to sign-on and to push the bills past votes in both House and Senate, and to the president's desk.
As a bonus, we had a surprise visit from Senator Adam Schiff and Elizabeth Warren personally interviewed some of us. ABC News did the same. All because we trusted our gut to show up and lead with our voices.
It was a privilege to represent the voices of the MBC / BC community. Though there is much more to go, we felt that incredible support and impact were made despite a difficult time. When we influence policies, and policies become law, millions benefit. That is the power of using voices @ scale.
Organizations like METAvivor, Komen, and Young Survival Coalition have made advocacy accessible, with opportunities to share your voice and lived experiences to influence change.
Each of us has a voice that matters, and we need them now, more than ever. Imagine... if your story was the survival guide for someone in their darkest hour....
(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.
