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On October 9, 2018 I boarded a flight to Washington D.C. to attend my very first Stage IV Stampede. Truthfully, I had very basic knowledge about how our government passed new legislation and I will now admit that my pre-flight prep work consisted of a quick YouTube viewing of Schoolhouse Rock’s “I’m Just a Bill”. I was traveling alone and nervous, but I was extremely excited to connect with a larger community of MBC advocates. I had been living with MBC for 2 years at that point and finally felt ready to join the advocacy fight for more for stage IV, to find my advocacy tribe, and to figure out how I could play a part in making a difference for all metastatic patients.
When I arrived at the Holiday Inn Capitol Hill I was welcomed with open arms by METAvivor staff, board members, and patient advocates and caregivers from around the country, many of whom were “newbies” like myself. The training program that followed was comprehensive, yet manageable. METAvivor’s advocacy committee has a tremendous breadth of experience with Capitol Hill and they coordinate the Stampede with the Health and Medicine Counsel, a lobbying firm in Washington, D.C. Leading up to the Stampede this team of advocacy all-stars handles laying the ground work including providing advocate training materials and the appropriate contact information for the legislative offices in your state.
After such a wonderful and emotional experience in 2018, I was hooked. I returned again to the in-person event in 2019 and in 2020 when the Stampede moved to a virtual format I volunteered to be a state captain for Ohio. While “captain” may seem like a daunting title, my focus remains sharing my story and the more I have interacted with congressional offices the easier it has become. The METAvivor advocacy team and the Health and Medicine Counsel arrange bi-monthly state captains calls, yearly training specific to the Stampede and provide the captains with the logistical information to help us connect with Stampede participants and legislative aids in their districts.
The most important takeaway from that first year that continues to resonate with me today is that your willingness to share your personal story is truly what matters most. Your insight as a patient or your experience as a caregiver is so powerful; it is difficult to put into words what an impact it can make when we sit down to have these conversations with the legislative offices. The more our community can share with our legislators about the realities of living with metastatic breast cancer the more we can push for increased funding for research and gain momentum for support of crucial legislation that will improve the daily lives of metastatic cancer patients. You don’t have to come into the Stampede as an expert on the inner workings of the government, just an expert on your realities as a patient or caregiver. Your personal story is your advocacy super power.
If you are interested in getting involved in METAvivor’s advocacy efforts I encourage you to head to our website to learn more about the Stage IV Stampede. If you have previously participated in the Stampede and would like to know more about becoming a state captain please reach out to [email protected]. Together we can do more for stage IV.