Advocacy

During the 2024 Minnesota legislative session, EFMN’s priority is to secure funding for an awareness campaign for the recently passed bill that allows FDA-approved seizure detection devices (SDD) to be covered by Minnesota Health Care Programs (MHCP). The awareness campaign will be vital in spreading awareness about the passage of the bill, which went into effect January 1, 2024, and provide education about epilepsy, Seizure Detection Devices and the new coverage under MHCP so all those eligible can utilize this life-saving device.

Seizure Detection Device Legislation

Passage means that FDA-approved seizure detection devices will now be covered under Minnesota Medical Assistance. Seizure detection devices help reduce the risk of Sudden Unexpected Death in Epilepsy, or SUDEP, and help increase quality of life and care for people living with epilepsy. The legislation goes into effect on January 1st, 2024 and helps expand access to care for low income families and individuals. Minnesota is the first state in the country to pass legislation expanding access and coverage in this way.

Drug Formulary Committee Reforms

Medical Assistance has a state committee that makes decisions on which drugs patients can receive with or without prior authorization. This new bill helps increase the patient perspective included on the committee and also increases transparency in the process.

Rare Disease Access to Care

Allows individuals with a suspected rare disease to go out of their insurance network to access specialty care, quicker. It often takes people with rare diseases around seven years to receive accurate diagnosis and treatment, and this new law will enable people to receive the care they need with fewer hurdles. We are a proud partner to Gillette Childrens’ who led on this bill.

Minnesota Inclusion Act

Ensures undocumented immigrants are not excluded from MinnesotaCare Coverage. Under this new revision, undocumented immigrants who meet the income threshold for MinnesotaCare Coverage are eligible to enroll. This important legislation means families and individuals we serve can access routine and affordable care without the risk of undue medical debt.

Seizure Smart Schools (SF 654, Lang/HF 469, Moller)

This year we continue our fight to pass Seizure Smart School Legislation which ensures that school personnel is prepared to recognize and respond appropriately and efficiently to a student experiencing a seizure. It is estimated that 7,400 children with epilepsy live in Minnesota, a state which has just over 3,000 public, private, and charter schools. By bringing awareness to the entire education community, students living with epilepsy or a seizure disorder can feel safe in school and reach their full academic potential. Five other states have passed Seizure Smart Schools Legislation including Kentucky, Indiana, Texas, Illinois, and New Jersey. Together, we can ensure that Minnesota joins the list in 2021.

Download Seizure Smart Schools One-pager

Rare Disease Access to Care (SF 464, Draheim/HF 626, Reyer)

A major priority this year is working with our partners at Gillette Children’s Specialty Healthcare to improve access to care for individuals with rare diseases. We know that on average a person sees eight providers before they are diagnosed with a rare disease and face year-long waits to receive the care they need. This legislation works to reduce barriers and streamline the processes, improving the flexibility of health plans to allow individuals to see the specialists they need for diagnosis and treatment.

Minnesota Human Rights Act Amendment (SF 1939, Abeler/HF 2010, Reyer)

The Human Rights Act of Minnesota was written 17 years before the Americans with Disabilities Act (ADA). The gap between these laws means when individuals with disabilities are going through the interactive process with their employer to determine accommodations they can only receive help from federal agencies. This bill allows state agencies like the Minnesota Council on Disability and Minnesota Council on Human Rights to be more responsive and support people with disabilities to get the accommodations they need.