Advocacy Updates


For many individuals impacted by CIDP and MMN, the home is the safest, least expensive, and most convenient site of care to receive regular infusions of IVIG. However, Medicare Part B currently only covers the cost of the medication and not the associated items and nursing services necessary to infuse in the home. This discrepancy undermines quality healthcare and creates cost-related challenges as patients are forced to travel to other sites of care to receive infusions or pay for essential care out of pocket. The current lack of comprehensive access to home infusion for Medicare beneficiaries with CIDP and MMN can lead to burdensome travel, skipped infusions, and progressive disability. These challenges are particularly significant for affected individuals that reside in rural or medically underserved communities. Moreover, many private insurance plans currently cover home infusion, which can make transitioning on to Medicare extremely disruptive for those with CIDP and MMN.


The patient and their physician should be able to decide the proper treatment regimen and ideal site of care without arbitrary restrictions resulting from outdated Medicare policy. In this regard, Congressmen George Holding (R-NC) and Earl Blumenauer (D-OR) have introduced the Medicare IVIG Access Enhancement Act (H.R.4724) to facilitate access to IVIG home infusion specifically for individuals affected by CIDP and MMN. This bill would establish a three-year Medicare demonstration project to provide comprehensive coverage for home infusion and study the cost and health outcomes to provide the necessary information to update and modernize the law appropriately (as we expect the cost to be lower and the health outcomes to be improved). Congressman Holding and Blumenauer sit on the House Ways & Means Committee, which handles Medicare issues, but in order for their bill to become law it will need additional support in the form of congressional cosponsors.

Please, ask your member of the House of Representatives to “cosponsor” H.R. 4724!

Here’s how!

2015 GBS-Group2

Foundation Hill Day

  • 20 advocates participated in 26 legislative visits for 2017.
  • 100 Foundation members of Grass-Roots Advocacy group.

Guillain-Barré Syndrome is now listed as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP). 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.


The Foundation supported other related non-profits by attending PSI, AANEM and PPTA Hill Days

  • Patient Services, Inc. (PSI) Hill Days are about supporting patient’s access to premium assistance, giving Hill offices the patient perspective and advocating for the importance of these programs.
  • We have worked with American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) to assist in rooting out the fraud in the EDX testing field. These fraudulent factors have an adverse effect on patients and ultimately lead to misdiagnosis.
  • We advocated with Plasma Protein Therapeutics Association (PPTA) giving the patient voice in discussions about the necessary access to therapies and the need for cost effective therapies.

PSI’s 3rd party premium bill

  • Some insurance plans are exploiting a loop hole to discriminate against rare/costly conditions. Many legislators and patients are unaware this is happening (and surprised it can happen).
  • Congress can fix the loop hole and Health and Human Services (HHS) could simply clarify the rule.
  • A new bill by Rep. Kevin Cramer (R-ND) will be introduced in September which the Foundation supports.

Report Language

  • National Institutes of Neurological Disorders and Stroke – The Committee supports progress of increased research in GBS and CIDP
  • National Institute of Allergy and Infectious Diseases (NIAID) is working on hosting a State of the Science conference for autoimmune neuropathies.

4 pillars of Health Care Reform

The Foundation focuses on the following elements of health care reform:

  • Maintain basic patient protections in ACA reform/repeal proposals.
  • Maintain pre-existing condition discrimination prohibition.
  • Allow young adults to stay on their parent’s insurance until age 26.
  • Limit lifetime and annual caps on insurance coverage.
  • Limits on out-of-pocket costs for patients.

GBS|CIDP Advocates including CIDP patient and staff member Kelly McCoy participated in a broad community effort led by the Cancer Society visited Senate offices and explained to them the harm that would have occurred without basic patient protections through the repeal and replace debate.

NIH Funding

The Foundation continues to request increased funding for National Institutes of Health FY2018 ask of $36 billon.