For many people, IVIG and SCIG is an amazing, life-saving medication! IVIG and SCIG are immunoglobulin therapies created from source plasma. Source plasma is donated from healthy volunteers at one of many plasma collection centers across the country. People who donate plasma are everyday heroes and we thank them for their time and contribution!
Currently, there is a situation that is making it harder for people to donate source plasma. US Customs and Border Protection has stopped allowing people from Mexico to come to the US to donate plasma, and this could result in a decline in the amount of source plasma available to create medicines like IVIG or SCIG.
Help us protect the source plasma supply by writing a letter to your Senators and Representative! Our goal is to make Members of Congress aware that this action could affect access to medicines in the near future.
Complete the form below to create a letter that will be sent to your Representative and Senators!
[CONSHOHOCKEN, PA] — GBS|CIDP Foundation International, August 31, 2020
This October, The GBS|CIDP Foundation International is encouraging patients and caregivers affected by Guillain-Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP,) or variants of the condition such as Multifocal Motor Neuropathy (MMN), to join a virtual “Month of Action” advocacy campaign. Opportunities for participating in “Month of Action” include: Online advocacy training videos; Speaking with Members of Congress and their staff; Sharing key advocacy collateral. Currently, there are 200 GBS|CIDP advocates who have supported legislation and policy issues that impact access to therapy and the quality of healthcare for our patient community. Registration is required to participate in October “Month of Action.” A step-by-step guide, including a summary of current legislative agenda, can be found athttps://www.gbs-cidp.org/month-of-action-signup/
“The GBS Foundation International is dedicated to advancing policy and legislation that improves, protects, and preserves access to timely care and appropriate treatment in the appropriate setting for GBS, CIDP, and variants patients.”
– Chelsey Fix, Advocacy Manager, GBS-CIDP Foundation International
About the GBS|CIDP Foundation International
Guillain-Barre Syndrome (GBS) is a very rare autoimmune disorder that affects the body’s peripheral nerves located outside the brain and spinal cord. The condition can present suddenly, beginning with numbness or tingling in the extremities, and progress to total paralysis within a matter of hours. GBS affects both genders, all ages, and all ethnic groups. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP,) is characterized by progressive weakness and sensory loss in the patient’s arms and legs. CIDP usually develops over a course of 6-to-10 weeks and occurs on both sides of the body. CIDP is frequently not self-limiting and, if left untreated, may progress to wheelchair dependence.
According the GBS|CIDP Foundation’s Executive Director Lisa Butler, “Both conditions and its variants are extremely rare. GBS affects 2 people each year in every 100,000. The prevalence of CIDP is estimated to be as many as 9 in 100,000 individuals.”
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!
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 firstname.lastname@example.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
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:
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.
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