Reps. Blumenauer, Holding and Butterfield Introduce Legislation to Help Medicare Patients Suffering From Rare Diseases

May 23, 2019
Press Release
Today, Congressman Earl Blumenauer (D-OR), Congressman George Holding (R-NC), and Congressman G.K. Butterfield (D-NC) introduced the Medicare IVIG Access Enhancement Act, which would provide much-needed assistance to Medicare patients suffering from Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Multifocal Motor Neuropathy (MMN). 
Patients are frequently treated with Intravenous Immune Globulin (IVIG), a medicine derived from plasma that can significantly improve health outcomes. Given mobility challenges associated with CDIP and MMN, home treatment is the preferred and most efficient site of care.
“These rare diseases are extremely difficult to deal with. We should be making it as easy as possible to improve quality of life and allow patients to receive care from the comfort of their own home,” said Congressman Blumenauer. “Home infusion options for patients of CIDP and MMN will enhance quality of life and increase positive health outcomes. It’s the right thing to do.”
“In-home IVIG therapy is an innovative and cost-effective way to provide CIDP and MMN patients with higher quality treatment that enables them to live more productive lives,” said Congressman Holding. “This bill is a win-win for taxpayers and patients alike.”
With over 900 North Carolinians living with CIDP and over 30,000 ongoing cases nation-wide, there is  great need to help these vulnerable patients suffering from this rare disorder,” said Congressman Butterfield. “I am proud to join my colleagues in helping to decrease these patients mobility challenges and increase their level of convenience and improve their quality of life.”
As an advocate for this rare disease patient community, we support and advocate for specific policy and funding initiatives that can vastly improve the lives of patients living with these debilitating conditions. GBS, CIDP, and some variants are generally treated with intravenous immunoglobulin (IVIG), said Matthew LaRocco, Vice-President of GBS|CIDP Foundation International in Portland, Oregon. “Patients with chronic conditions (CIDP and some variants) require IVIG treatments for the rest of their lives. We advocate for all patients to have access to all products at all points of care.”
“Our thanks to Congressman Blumenauer for leading this legislation to enact Medicare Part B Home Infusion Demonstration Project for patients with CIDP and MMN. 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). Please facilitate patient-centered and cost-effective home infusion for this community by supporting our reintroduced bill that would enable Medicare patients’ access to home infusion.”
The debilitating conditions addressed in the legislation are the result of the patient’s own immune system attacking their motor nerves, leading to compromised mobility and a lower quality of life. This bill would create a three-year demonstration project that extends Medicare coverage of IVIG therapy in the home for 3,000 patients suffering from CIDP and MMN, similar to the programs currently available to patients with primary immune deficiency diseases.