Congress
Stage IV Stampede march to the Capitol
Stage IV Stampede. It's an annual 2-day event to bring attention, to Congress, to the needs of those living with Metastatic Breast Cancer (MBC). It's organized by Metavivor, one of the largest grassroots nonprofits focused on advancing research and awareness for MBC. This was the first in-person event in over two years, due to the pandemic, so it was uniquely special.
The goals were to bring awareness and advocate for increased MBC research funding, improved accuracy of the national cancer statistics database (SEER), and improved access to quality healthcare and benefits (via two legislative bills). The end result was 130 Congressional visits, covering 35 states, by 240 advocates - patients, caregivers, and supporters. We brought faces to the issues.
We talked to the country's lawmakers - those with the power to approve BILLIONS for medical research and pass key bills that would benefit millions, especially Metastatic Breast Cancer. What an amazing and empowering experience.
MBC advocacy is one of the strategic pillars of Unicorn Cancer Thrivers. This was the first time I got involved with real advocacy and at the national level. I recognized many legendary MBC community leaders and advocates, who themselves are living with MBC, and who have influential voices in media, research, and government. Others came from as far as Egypt. It was such a privilege to meet them in person, and many others, hear their stories, learn, and connect. There was no awkwardness and no small talk - we spoke the same language. We are on a common mission.
“But while many were joyful to see each other again, it came with the harrowing truth that many other faces were missing.”
But while many were joyful to see each other again, it came with the harrowing truth that many other faces were missing. Some passed. Some signed up but their disease had other plans (treatment changes, not feeling well). This is the reality of life with MBC - each day comes with uncertainties and never a given.
So the 240 of us who made it to DC needed to be the voices of most of the 168,000 MBC'ers who could not. That really hit.
Recital of the play “IV: Our Lives”
“When you have early stage breast cancer, cheerful folks come in to tell you about all the pink celebrations and bell ringing in store when you beat it.... Then when it came back as Metastatic Breast Cancer, it was like I fell off the pink stage and no one cared.”
One of the highlights of training day was a powerful recital of a play - "IV: Our Lives" - produced by Andy Silver, a professor at Mercer University. It was a series of stories from those living with MBC, woven together into a gripping narrative covering many aspects of MBC life. It was emotionally read by a few MBC advocates - some reading their own pieces.
There were tears in the room as people relived their own experiences, seeing themselves and others in the readings. Repressed voices that were finally freed and an audience that felt heard. The voices also gave hope. Some in the room told their stories of living with MBC for 10, 15, 20+ years. Above all, the play was a charging rally and recognition that each of us can make a difference for someone else, no matter how long we have on this earth.
Morning arrived. We all gathered and began the signature Stage IV Stampede march to the US Capitol, Stage IV picket signs in hand, and chanting all the way. It was moving and powerful scene, filled with passion and purpose, and like a fierce dragon painted in teal, green, and pink (metastatic breast cancer colors).
We paused on the Capitol lawn and rang a bell 117 times (# of MBC deaths/day) to recognize loved ones with MBC who are no longer with us. I read out my wife Janice's name. I heard names of children, mothers, fathers, daughters, sons, spouses.
Senators Tina Smith D-MN and Chris Murphy D-CT
After passing through security, we made it to a large room inside the Russell Senate building. It was a hectic day - voting for both a new House speaker and new head of the NIH (National Institutes of Health) were underway, and officials were swarming. Co-sponsors of two MBC bills, senators Chris Murphy (D-CT) and Tina Smith (D-MN), came to thank us for supporting the MBC community and encourage us for the day of discussions across Congress.
Our agenda focused on advancing research and improving care:
Provide the National Institutes of Health (NIH) with at least $50.9 billion for FY 2024
Provide the Advanced Research Projects Agency for Health (ARPA-H) with $2.5 billion for FY 2024
Encourage Congress to work with NIH and CDC to modernize the SEER Registry (database of cancer statistics)
Provide meaningful increase for the Department of Defense Peer-Reviewed Breast Cancer Research Program
Help pass the bipartisan Metastatic Breast Cancer Access to Care Act (fast-track disability and federal health benefits for MBC patients)
Help pass the bipartisan Cancer Drug Parity Act (prevent insurance companies from influencing treatment decisions based on cost-sharing responsibilities)
We split into teams, each covering a handful of Congressional offices of states including the ones we came from (if we are from their district, they listen even more!). Each visit ran about 20 minutes and went on for 4-5 hours.
My partner was an amazing board member of Metavivor (and former Congressional staffer) and together we hit six offices covering California and Hawaii. I was so glad to be with a veteran staffer and just followed her as we hustled through tunnels, secret paths, and epic staircases in both the Senate and House buildings.
Janice had Metastatic Breast Cancer for more than 10 years, which meant we encountered EVERY issue on the table. Through my charity work, I was also exposed to the struggles of many MBC communities, especially the underrepresented. It was empowering to be able to tie together all stories and struggles to show Congress why MBC urgently needs help now, along with educating and correcting misinformation. And remind them why my wife Janice was not there with me.
We had emotional, heartfelt, and promising conversations with these offices:
Alex Padilla, Senator, D-CA
Brian Schatz, Senator, D-HI
Mazie Hirono, Senator, D-HI
Anna Eshoo, Representative, D-CA
Kevin Kiley, Representative, R-CA
Maxine Waters, Representative, D-CA
Outcome? The ultimate goal is to obtain their co-sponsorship or vote to pass the bills benefiting MBC (research, access to care, drug parity). Some were already sponsors or supporters, some appreciated new awareness and will consider, some offered new ways to support MBC. We also set the groundwork for more discussions, as these are multi-year efforts. In all cases, our real stories hit home and we built good relationships. I felt we accomplished our intent.
I used to think it was a monumental and almost hopeless effort to work with the government. This experience changed all that and led me to these takeaways:
Congress has the largest impact on medical research, by having the power to fund BILLIONS for the NIH (largest biotech org in the world)
Congress has the greatest influence in protecting the people from unfair practices by drug and healthcare companies
Congress can improve the lives of millions through better health coverage and benefits
Congress does not know what is most important unless WE show up and TELL them; they serve us and they WANT to listen!
Each of us CAN make a difference, but only if we SPEAK up and/or take ACTION for what we strongly believe.
“Each of us CAN make a difference, but only if we SPEAK up and/or take ACTION for what we strongly believe.”
See videos / reels of the experience on our Instagram @unicornthrivers.
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.
