As we kicked off 2021 full of hope for the future, we also welcomed a new Congress to Capitol Hill. The 117th Congress first convened on January 3, 2021, and now that they are settled in, we believe it is time for the GBS|CIDP and variants community to reach out and introduce our Representative and Senators to the community and tell them about our priorities! It is so important that the offices of your Members of Congress hear often from you and others from the community so that they understand how important our issues are. If you don’t tell them about how they can help improve life for those living with GBS|CIDP or variants, who will?
Now, your Representative and Senators might not have changed, but you can – and should – still reach out! A friendly reminder of the GBS|CIDP community and our priorities is always a good idea.
Click Here to create a letter through our Advocacy Action Center
On the other hand, some Members of Congress might be new, or might have new roles – such as Committee Assignments – and they are eager to hear about how their new position can benefit their constituents – AKA you! If you want to find out if your Members serve on a Committee important to us, you can find the Senate Committee Assignments by clicking here and the House Committee Assignment by clicking here.
PRO TIP: we often work closest with members of the Defense and LHHS Subcommittee and the Labor, Health and Human Services, and Education, and Related Agencies Subcommittee of the Senate Appropriations Committee. On the House side, we work with Members of the Ways and Means Committee and the Energy and Commerce Committee.
So whether you are introducing yourself for the first time or sending a friendly reminder, please send a letter to you Representative and Senators by filling out the NEW version of our Advocacy Action Center. Once you complete this form, your letter will be emailed to the staff members of your Representative or Senators. If you have any questions, don’t hesitate to reach out to Chelsey.Fix@gbs-cidp.org.
Click Here to create a letter through our Advocacy Action Center
UPDATE on previous advocacy efforts
We have received a few questions about all of the progress we made in the 116th Congress, so here is a quick overview of our successes so far and where we stand in our ongoing efforts:
- Home Infusion & Medicare:
- Unfortunately, our bill to enact a demonstration project that would create a home infusion benefit in Medicare Part B (HR 2905) was not passed with the 116th Congress. However, we learned a lot from the advocacy and made many connections that will help us in the 117th Congress. Stay tuned for updates on a NEW bill that we will have introduced by our champions to fix the coverage gap of home infusion for CIDP and MMN patients on Medicare.
- The Department of Defense Peer Reviewed Medical Research Program
- Previously, GBS was listed as a condition eligible to be studied through this special research program. For FY 2021, the category was expanded to Peripheral Neuropathy – which is great for our community because now researchers can submit a grant for GBS, CIDP, MMN, or other variants! For FY 2022, we are hoping that GBS will get its own category again (in addition to Peripheral Neuropathy) because of the known link between military service and GBS.