On May 1, Executive Director Shirlyn Adkins, JD, and Health Policy Director Millie Birr, JD, MPP, joined the GBS CIDP Foundation International on its Hill Day visits with key legislators and their staff. The group met with a total of 18 congressional offices.
Prior to the Hill Day, AANEM worked with GBS CIDP staff to compose a congressional sign-on letter to CMS, describing the detrimental effects the recent Medicare reimbursement cuts have had on both electrodiagnostic (EDX) physicians and patients. It urged CMS to continue to work with the affected groups to address these issues. The letter requested the release of specific claims data, which AANEM and other groups can use to understand the cuts’ impact on patient care. The letter was signed by Congressmen Erik Paulsen (R-MN) and Dutch Ruppersberger (D-MD).
During the congressional visits, AANEM asked House Representatives to sign-on and requested Senate offices to consider bringing forth their own sign-on letter. Nearly all of the House offices expressed interest in signing the letter, and several of the Senate offices showed support for the initiative.
“We will continue our work with the GMS CIDP Foundation International to ensure the letter moves forward,” said Birr. “We are hopeful that it will result in the release of the claims data and future meetings with CMS to discuss next steps.
“The patients did an amazing job of expressing the importance of early and proper diagnosis of GBS/CIDP,” noted Adkins. “They emphasized the long term consequences of not seeing the appropriate physicians and having EDX testing performed in a timely manner.”
The AANEM also left materials with the staff that described the impact of delayed diagnosis in the case of distal Symmetric Polyneuropathy Performance Measures
recently created by the AANEM and American Academy of Neurology (AAN) as well as information on certification and laboratory accreditation.
“Overall, the meetings were a great success. The legislative staff seemed very receptive to our message and supportive of our efforts.”
AANEM staff is planning its own Hill Day this September for members of the State Liaison Program
“We are very excited to return to Capitol Hill to ensure the continued forward momentum of our efforts,” said Birr.
Watch for future emails asking you to have your representative sign on the letter. The more representatives that sign on, the more likely CMS is to respond to the request.