Advocacy Priorities

Legislative Agenda

Every year, the GBS|CIDP Foundation International outlines a legislative agenda that describes asks we will make to our federal government to improve the lives of the patient community. The Foundation is asking the 116th Congress to:

Cosponsor legislation enacting a Medicare Part B Home Infusion Demonstration Project for patients with CIDP and MMN

  • How does this help our community? 
    • Many affected individuals and families struggle with accessing infusion centers, which may be hours away, for infusions that can take an entire day (leading to skipped-treatments and progressive disability).
    • If enacted into law, this legislation will begin a project to determine the cost of home infusions of IVIG for CIDP and MMN patients on Medicare Part B, as well as the health outcomes of patients who choose to participate.
      • NOTE- if you are on Medicare and have struggled to get your IVIG at home, please email Chelsey at Chelsey.Fix@GBS-CIDP.org.

Continue to include Guillain-Barre Syndrome as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) for FY 2020

  • How does this help?
    • Military service members, particularly those stationed abroad, are at a higher risk for infection. Two-thirds of GBS cases occur following an infection and most commonly these infections include gastroenteritis or respiratory tract infections; two prevalent illnesses amongst those that frequently travel abroad.
    • Through this program, research into the cause, treatment, or cure of GBS can be studied. Researchers are able to submit proposals to this program, which is generally less competitive than typical federal grant programs.

Provide the National Institutes of Health (NIH) with at least $41.6 billion in FY 2020, a $2 billion funding increase

  • How does this help?
    • NIH coordinates a modest-but-meaningful research portfolio in peripheral autoimmune neuropathies. Additional funding will ensure this important research portfolio can expand and advance to help improve treatment and diagnosis and ultimately finds cures.
    • The NIH was involved with the clinical trial that showed the effectiveness of IVIG treatment for CIDP patients!

Provide the Centers for Disease Control and Prevention (CDC) with $7.8 billion in FY 2020, a $500 million funding increase

  • How does this help?
    • Zika virus is a leading trigger for peripheral autoimmune neuropathies, and CDC is leading federal efforts to contain and combat outbreaks. Additional resources will enhance these important and timely public health activities, particularly in at-risk areas like Puerto Rico.

Help us promote our legislative agenda by reaching out to your Senators and Representatives with our Action Center. If you have questions or issues, please email Chelsey at Chelsey.Fix@GBS-CIDP.org.


Recent Advocacy Successes

Chelsey Fix on Capital Hill
Advocacy Manager Chelsey Fix on Capitol Hill

HR 4724

  • GBS CIDP Foundation has worked with legislators to introduce a bill that will take the necessary steps to ensuring the IVIG home infusions are covered by Medicare comprehensively.
  • Bill was first introduced to the 115th Congress, and we received critical feedback on how to make the bill better. We are now getting ready to have our foundation champions in the House of Representatives introduce the bill to the 116th

DOD PRMRP

  • The Department of Defense (DOD) supports a research program- called the Peer Reviewed Medical Research Program – where grants are given to researchers studying diseases from an approved list.
  • Every year, diseases are added to the list. Through Advocacy, GBS has been a disease that is eligible to be studied under this program since 2016.
  • This creates more (less competitive) research opportunities for the community.

NIH Funding has continued to increase

  • GBS-CIDP Foundation International has advocated along with many other advocacy/medical groups to ensure that the NIH is properly funded each year. We have been successful in securing increases each year since this effort began.

Patient Protections for Insurance Coverage

Through grassroots advocacy, the rare disease community was able to secure essential patient protections during the recent healthcare reform process:

  • Eliminated discrimination of pre-existing conditions.
  • Banned lifetime or annual caps of coverage.
  • Secured dependent/child coverage through parents’ policies until age 26.
  • Created systems to reduce out-of-pocket costs.

Awareness on Capitol Hill

We have successfully advocated for report language that specifically mentions GBS and CIDP to be included in official government documents

Guillain-Barré syndrome

Like Guillain-Barré syndrome and chronic inflammatory demyelinating polyneuropathy

Peer-Reviewed Guillain-Barré syndrome

 

 

Help us continue our success by visiting the Action Center!