GBS|CIDP Foundation Welcomes New Congress & Advocacy Opportunities

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GBS|CIDP Foundation International Welcomes New Congress and New Administration, Additional Opportunities for Advocacy

This month, GBS|CIDP Foundation International sent its introductory and welcome letter the 119th United States Congress, expressing the needs of our patient and caregiver community. In the letter sent to all current US Representatives and Senators, we outlined our vision for convenient access to early and accurate diagnosis, appropriate and affordable treatments, and dependable support services for patients with GBS, CIDP, or related syndromes such as MMN.

Additionally, upon their confirmation by the Senate, we plan on sending out introductory letters to the new heads of the Centers for Medicare and Medicaid (CMS), the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), the Department of Defense (DoD), and the Department of Health and Human Services (HHS). In doing so we hope to bolster our existing relationships with these agencies and increase opportunities for effective advocacy.  

Later next month, we will head out to Washington, DC to meet with members of Congress to discuss supporting soon to be re-introduced bipartisan legislation to amend title XVIII of the Social Security Act to expand coverage of the in-home administration of intravenous immune globulin under the Medicare program, as well as the need for continued funding for research at the National Institutes of Health. Further, as discussions continue regarding funding appropriations for Medicare and various health services, the GBS|CIDP Foundation International is committed to advocating for maintaining funding levels that facilitate the promotion of critical research, and dependable support services.

Finally, we are thrilled to announce a new way for patients and caregivers to advocate on behalf of the organization. The Patient/Caregiver Writing Program is an exciting new way for patients to advocate on behalf of the organization and themselves by writing opinion pieces or letters to the editor for their local newspaper. Full details will be announced in an upcoming post, but if you are interested in participating, please contact jacob.fuller@gbs-cidp.org.