Donate to Advance Research and Education
With your help, the American Neuromuscular Foundation can fund research that will improve the lives of patients with neuromuscular diseases.

Action Center

Join the AANEM in its work to improve state and federal decision makers’ and payers’ understanding of neuromuscular (NM) and electrodiagnostic (EDX) medicine. The Advocacy Action Center will:
  • Assist you in grassroots lobbying and political advocacy
  • Assist you in working with payers for fair reimbursement and to stop fraud and abuse
  • Help you participate in legislative action alerts and contact U.S. senators and representatives about important health policy issues

Current Issues

AANEM is currently working with the Centers for Medicare and Medicaid Services (CMS) and members of Congress to establish mandatory standards, based on AANEM's EDX Laboratory Accreditation Program, for the performance of EDX testing.  The goal of this effort is to ensure that patients receive only quality EDX testing from qualified providers--ensuring that they receive an accurate diagnosis and appropriate treatment.

AANEM has the support of several stakeholder organizations, inlcuding the ALS Association, Muscular Dystrophy Association and GBS/CIDP Foundation International.  Additionally, sign-on letters of support have been sent by members of both the Senate and the House, along with the publication of support language in the 2016 Senate Appropriations bill.


Guide to Legislative Advocacy

This guide provides a brief overview of the powers of Congress, how a bill becomes law, and tips on contacting your legislator. It includes sample letters/emails and sample scripts for meetings and phone calls with legislators. When communicating with legislators:
  • Focus on the impact on the patient with a neuromuscular (NM) disorder. 
  • Stress the importance of the patient receiving the correct diagnosis to reduce costs both to the healthcare system in avoiding unnecessary testing, surgeries, medication, etc. 
  • Focus on the cost saving to the overall public in terms of health insurance costs, time off of work, and disability costs.
  • Emphasize overarching issues facing patients with NM disorders, which include the importance of funding NIH research, faster FDA approval for drugs, and ensuring access to clinical trials.


Guide to Payer Advocacy

This guide provides links to all AANEM materials you may need when meeting with an insurer, as well as basic negotiation tips and common discussion topics. It includes a sample letter to an insurer to set up a meeting and guidance on anti-trust concerns. When meeting with the payer is it helpful to use the guide that AANEM created that lists possible “Red Flags” to identify possible fraud. It is also helpful to discuss the difference between quality EDX studies and those provided by mobile laboratories (view position statement) that are not providing EDX studies on site and in real time (view position statement).  

It is useful to educate payers about the proper qualifications for an EDX physician and/or for a neuromuscular specialist.


Tips for Contacting Your Legislator
Advocacy Brochure (PDF)
Contribute to the Advocacy Fund