Medicare

Welcome to Fall Advocacy

Coming Soon- Fall Colors!

Congressional Recess officially ended on September 9th, and the Northeast is already seeing leaves fall from the trees (no color change, yet). Now that Washington, D.C. is back to being fully operational, we have a lot of great things to report on! Check out our highlights below, and stay up to date with all things GBS|CIDP Advocacy Related by following me on Twitter (@ChelsOnTheHill).

GBS is Eligible To Be Studied Under DOD PRMRP Grant Funding

This one has been a long time coming! We prioritized asking our Senators to include GBS on the list of conditions eligible to be studied by grants given through the Department of Defense’s Peer Reviewed Medical Research Program (DOD PRMRP) during Hill Day (almost 4 months ago).

We have finally received the official word that GBS was included in the Senate’s appropriations bill for next year’s DOD PRMRP! This is great news for the community as it gives our researchers a chance to compete for grants where there are typically less applicants. In fact, GBS|CIDP Global Medical Advisory Board Member Dr. Kazim Sheikh recently received a grant from this program. One of my favorite things about advocacy work is seeing Research & Advocacy come together – and this is EXACTLY THAT!

THANK YOU to the Hill Day crew for making this happen!

H.R. 2905 Update

Thanks to the August Advocacy and continued work of our community writing letters to their Representatives, we currently have 15(!!!!) cosponsors of HR 2905. Most importantly, we have continued to draw support from both Democrats and Republicans. This bill is bipartisan, and it is truly great to see party lines set aside for our patient community. Here is the current list of cosponsors:

  • Rep. Blumenauer, Earl [D-OR-3]
  • Rep. Holding, George [R-NC-1]
  • Rep. Butterfield, G. K. [D-NC-1
  • Rep. Kelly, Robin L. [D-IL-2]         
  • Rep. Garamendi, John [D-CA-3]
  • Rep. Sewell, Terri A. [D-AL-7]     
  • Rep. Marchant, Kenny [R-TX-24]
  • Rep. Davis, Susan A. [D-CA-53]  
  • Rep. Kelly, Mike [R-PA-16]          
  • Rep. Luria, Elaine G. [D-VA-2]
  • Rep. Evans, Dwight [D-PA-3]      
  • Rep. Matsui, Doris O. [D-CA-6]  
  • Rep. Smith, Adrian [R-NE-3]        
  • Rep. Price, David E. [D-NC-4]
  • Rep. Kind, Ron [D-WI-3]

If your Congressperson’s name is on this list, make sure you thank them with an email, tweet, or phone call. If they are not on this list, send them a letter by visiting our Advocacy Action Center (or emailing me for other creative ways to get in touch with their office).

We will continue to work with key Senators (meaning ones that serve on the Finance Committee) in the hopes of adding a Senate Companion bill. As a quick reminder, we need a bill to pass in both the House and the Senate for this to become enacted.

Other Random Updates

Lisa, myself, and our Health and Medicine of Washington Partners recently spent a day on Capitol Hill asking Representatives to become cosponsors of HR 2905. We were received with positive vibes and warmth. There was also a sense of “let’s get this done!” among the people we spoke with. We hope that the 12 offices we met with will become cosponsors soon!

NEW at all of our fall walks, chapter meetings, and regional conferences (Hello, Boston) is an Action Center “To-Go”! The registration desk at all of our fall events will have a form for you to complete, which will then come back to me. I will take your information from that form and turn it into a letter to your Congressperson asking them to cosponsor HR 2905. So, next time you are at a Foundation event, make sure you complete a form and encourage everyone around you to do the same!

I am collecting volunteers for our newly launched State-level advocacy program. If you are interested in learning more about the State Government + how to get involved, send me a message at chelsey.fix@gbs-cidp.org.

I can’t wait to continue our work together! Feel free to contact me at anytime with questions, suggestions, or enthusiasm for advocacy.
~Chelsey, Advocacy Manager

How A Bill Becomes A Law (in the US)

By Chelsey Fix, Advocacy Manager

It’s been over 20 years since Schoolhouse Rock released its last video, which makes me think that we all need a refresher on the process by which a bill becomes a law!

As a throwback, enjoy everyone’s favorite Schoolhouse Rock civics lesson by clicking here.

As a recap, that I will NOT be singing, here are the essential steps to bills becoming laws:

  • The bill is introduced by a Member of Congress
  • The bill gets referred to a Committee
  • The Committee debates on the bill, edits the bill, and may hold hearings on the bill to discuss it in detail
  • The Committee decides if the full Chamber of Congress votes on the bill
  • The full Chamber of Congress – say The House of Representatives – votes on the bill at a time set by the leader of that Chamber
  • The above steps are repeated in the other Chamber – say the Senate
  • If the bill passes both Chambers with a positive vote, it moves to be signed into law by the President

Woah – that’s a lot of steps! While this feels like a major mountain to climb, we should also be thankful that our government system is set up in a way that allows us to participate in the process for each of these steps. In fact, thanks to advocates like you who are reading this blog and joining this important cause, HR 2905 is making its way through this process, and we will be there every step of the way to make our voices heard. And when I say we, I mean me, you, and as many members of the GBS|CIDP Community that want to participate

Here is what we are doing this summer to push HR 2905 through the law-making process and how YOU can help:

  1. Lisa Butler, Jim Crone, HMCW, and myself will be heading to Capitol Hill this month to meet with members of the House Ways and Means Committee, members of the House Energy and Commerce Committee, and members of the Senate Finance Committee.
  2. In August, we will visit our Representatives’ and Senators’ local offices to meet with their staff there to ask for support for HR 2905.
    • HOW YOU CAN HELP: Email me at chelsey.fix@gbs-cidp.org to set up a meeting with your local offices. During the meeting, share your GBS|CIDP story and ask for the office to support HR 2905.

I will keep you updated on this process! It will always be a priority for the Foundation to advocate for every patient to have the right treatment in the right setting for them.

In the meantime, stay tuned for some awesome updates on the Advocacy Front involving state-level advocacy, the intersection of advocacy and research, and Hill Day 2020!

Warmly,
Chelsey