2019 has been a whirlwind of advocacy activity! We launched a new toolkit, a new Advocacy Action Center, reintroduced a Medicare IVIG Access Enhancement Bill, and moved our legislative priorities forward. Kudos to all of your hardwork! Before we think about what is in store for 2020 advocacy, let’s get a more detailed update on our success from this year:
- HR 2905- The Medicare IVIG Access Enhancement Act – was introduced and has 20 cosponsors
- Thanks to the hundreds of letters sent to Members of Congress this year, we can boast 20 cosponsors for this important bill that takes the steps to create coverage in Medicare Part B for home infusion of IVIG for CIDP and MMN patients.
- GBS was listed as a condition eligible to be studied by the Department of Defense Peer Reviewed Medical Research Program
- GBS research is essential for our community to get better treatments, better diagnosis methods, and better recovery plans. We are pleased that the research community has access to another funding program, and we are thrilled that Dr. Kazim Sheikh, GMAB member, received funding from this program for his GBS research.
- State Advocacy
- So far, we have 5 volunteers working with their state governments to make changes that will improve life for the GBS|CIDP community. Advocates in Louisiana, Indiana, North Carolina, South Carolina, and Arizona are coming together to make their voices heard. Coming in 2020 – more state government advocates and possibly state-level Hill Days!
- Historic community involvement
- In 2019, we had 52 advocates travel to Capitol Hill with us to advocate on important issues to the community. We also had 153 advocates write letters to their Representatives and Senators during GBS|CIDP Awareness Month to raise awareness of the issues facing the community. We also had more than 110 advocates use the Advocacy Action Center to write letters to their Representative in Congress asking them to Cosponsor HR 2905. Finally, we received additional support and more than 150 letters from our in-person events (walks, chapter meetings, and regional conferences) that allowed us to send even more letters asking more than 80 Representatives to become cosponsors. THANK YOU for your time and dedication to our cause!
Planning for 2020
We have a few major events for which to get excited! First, the biggest GBS|CIDP Hill Day EVER during the 2020 Symposium in Alexandria, VA! Don’t forget to visit the Symposium Portal to learn more about how to get involved with this historic Hill Day.
Second, we are excited to expand our state advocacy and hold a few state-level Hill Days! If you are interested in participating in- or organizing- a state Hill Day, contact Chelsey at Chelsey.Fix@gbs-cidp.org.
Finally, we are thrilled and honored to continue our advocacy work with all of the wonderful volunteers who offer their time to write letters, make calls, or meet with their Federal and State Legislators. It is only because of your work that we can continue to advance our goals of increased NIH research funding, improved access to treatments for the community, and special research funding opportunities.