Each October, a group of men and women, of all ages and races and stages of breast cancer, descend on Washington DC to participate in several events. 2018 was the first year Elliot and I traveled to DC for the Metavivor Stampede — I wrote about that experience and you can access that article here. Last year, in 2019, the event was larger and included the play, IV Our Lives — I wrote about that experience and you can access that article here.
As with many of the activities in 2020, the Stampede has gone virtual and that has created a whole lot of different and interesting new tasks, but also new and interesting pros, like being able to include more people, the people who wouldn’t have been able to travel to DC to advocate in person. To answer a question that I often get — NO, you don’t have to be a metastatic patient to participate, just a concerned citizen who wants to support someone you know with metastatic breast cancer. Frankly, that applies to a whole lot of people!
Here are the steps to participate:
- First, go to the website for Metavivor to register. Your registration means that you will get updates and details and be counted as a participant in the Stampede.
- Second, also on the Metavivor website, view the trainings. Each training was conducted live over the Spring and Summer months, but are available for everyone to view now. Each session is about 30 minutes and is a very similar training that we received in person in DC in 2018 and 2019.
- Third, find your state Captain. Metavivor has asked individuals in each state or region to head up the organization and scheduling and help with questions particular to that state or area. I suppose no one who knows me is at all surprised that I’m the Florida Captain, although I think I prefer Organizer, because that’s really what I’m doing.
- Finally, if you prefer, you can schedule your own meeting or simply send an email or letter to your representatives.
The Executive Director of Metavivor, Sonia Negley, is your best contact for determine who is the Captain/Contact in your area. Her email is: email@example.com. There are so many different ways to participate and help advance the concerns highlighted by Metavivor in partnership with the Health Lobby organization.
What I’ve offered each of the volunteers here in Florida is that I will attend any of the meetings with them and handle the legal/detail issues and overall asks if they don’t want to. All the volunteers need to do is make sure I have the name of their CongressPerson and are willing to tell their story. I’ll be conducting some training calls just in case anyone wants to practice their story (I like to call this an elevator pitch) before the day of the presentations.
What will we be addressing during this Stampede?
There are three issues we’re focusing on for 2020:
- First, thanking our representatives for the increase in funding last year for research into metastatic breast cancer through the NIH and NCI. The trainings break down the specifics for both and how each are funded. After thanking them for the increase, we will be asking for further funds to be allocated and to be earmarked for metastatic breast cancer research.
- Second, asking for the The Metastatic Breast Cancer Access to Care Act H.R.2178 (House) and S.1374 (Senate) be sponsored by each of our representatives. This act would eliminate the waiting period for Social Security Disability funds for MBC patients (currently 5 months) and the waiting period for access to Medicare for MBC patients (currently 24 months after qualifying for Social Security). There is precedence for this waiver as ALS patients already are given both immediately.
- Third, asking for The Cancer Drug Parity Act H.R.1730 (House) and S.741 (Senate) to be sponsored by each of our representatives. This act would ensure that any cancer drug be the same cost for patients regardless of how it is administered (pill, injectable, IV, etc) and regardless of the place it is administered (hospital, clinic, doctor’s office, home, etc). This bill would assist all cancer patients, not just those of us with MBC.
However you decide to participate, please consider doing something on this issue for all of us. The more voices, the more requests, the more constituents who contact their elected officials, the more progress we can make.
Any other questions? Let me know!