2024 Advocacy Priorities

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.

2023 Advocacy Priorities

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.

2021 Advocacy Priorities

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.

2020 Advocacy Priorities

Seizure Smart Schools (SF 1953, Lang/HF 1422, Baker)

Equip school staff to recognize and respond to seizures—keeping over 7,000 Minnesota students with epilepsy safe and supported in the classroom.

Prior Authorization Reform (SF 3204, Rosen/HF 3398, Morrison)

Reduce delays in epilepsy care by making the insurance approval process faster, more transparent, and overseen by qualified professionals.

Patient Access to Prescription Drugs (SF 1006, Nelson/HF 1257, Cantrell)

Stop mid-year insurance changes that disrupt epilepsy treatment. Support consistent access to the medications patients need.

Expand Access to Inclusive Child Care (SF 3473, Relph/HF 3693)

Fund grants to expand child care options for children with disabilities—giving families relief and kids the support they deserve.

Promote Employment at Livable Wages for People with Disabilities (SF 3003, Ulke/HF 2971, Cantrell)

Advance integrated, customized employment options at livable wages for Minnesotans with disabilities through coordinated state action.

2019 Advocacy Priorities

Seizure Smart Schools Training Initiative (SF 1953, Lang/HF 1422, Baker)

Train school personnel to recognize and respond to seizures, ensure Seizure Action Plans are in place, and authorize trained staff to administer rescue meds—creating safer learning environments for students with epilepsy.

Patient Access to Prescription Drugs (SF 1006, Nelson/HF 1257, Cantrell)

Support consistent access to prescribed epilepsy medications by preventing insurance companies from making harmful mid-year coverage changes.

Mitchell’s Law (SF 746, Isaacson/HF 932m Moller)

Allow Minnesotans to add emergency contacts to their driver’s license or state ID, ensuring critical information is accessible in emergencies.

Rare Disease Advisory Council (SF 973, Miller/HF 684, Mann)

Ensure patients and families affected by rare diseases have a voice in policymaking through a permanent advisory council.

Coalition Efforts

Step Therapy (SF 1026, Utke/HF 815, Acomb)

Expand protections so patients in public programs like Medical Assistance and MinnesotaCare can access medications without harmful delays due to step therapy protocols.

Health Care Access Fund

Protect sustainable funding for Minnesota’s health care safety-net programs—including Medical Assistance and public health initiatives—through a permanent provider tax.

HCAF Sign-On Letter

Best Life Alliance (SF 6, Utke/HF 179, Halverson)

Address Minnesota’s disability services workforce shortage by increasing wages for direct support professionals through a new Competitive Workforce Factor.

BLA Conference Committee Letter

Special Education

Improve special education funding and protect services for children with disabilities, including $90 million in new cross-subsidy reduction aid.

Coalition for Children with Disabilities Letter

Coalition for Children with Disabilities, Education Conference Committee

2018 Advocacy Priorities

Step Therapy (SF 2897/HF 3196)

On May 15, 2018 Governor Dayton signed HF 3196 into law. Implemented on January 1, 2019, this legislation created a process to allow providers to request and exception to a step therapy protocol when they believe it in their patient’s best interest. A provider may use one of the following circumstances when requesting an override:

1. The drug required under step therapy is likely to cause an adverse reaction, could negatively impact a person’s daily life, or would be physically or mentally harmful.
2. The patient has tried a drug required under step therapy which is in the same pharmacologic class or has the same mechanism of action.
3. The patient is currently stable on a prescription drug selected by the doctor while on a current or previous insurance plan.

Best Life Alliance (SF2889/HF 3191)

Founded in 2014, this coalition advocates for Home & Community-based Services (HCBS). HCBS provide individuals with intellectual and physical disabilities needs-based services that allow them to contribute and stay as active and independent as possible. Although both Governor Dayton and the legislature supported the Best Life Alliance legislation, they were unable to find common ground on other items included in the 2018 omnibus budget bill. New legislation was introduced in 2019.

Chloe Barnes Rare Disease Council (SF 2786/HF 2574)

Although both Governor Dayton and the Legislature supported the Chloe Barnes Rare Disease Advisory Council legislation, they were unable to find common ground on other items included in the 2018 omnibus budget bill. The legislation was re-introduced in 2019.

2017 Advocacy Priorities

Medical Assistance Coverage of Stiripentol (SF 1221/HF 808)

Passed in the 2017 session, this legislation requires Medical Assistance to cover Stiripentol under the early periodic screening, diagnosis, and treatment (EPSDT) program when medically necessary for Dravet Syndrome, when all other available covered prescription medications have been exhausted.

Medical Assistance (MA) Spenddown (SF 250/HF 225)

Passed in the 2017 session, this legislation changed Medical Assistance policy so that people with disabilities who depend on MA services can keep more of their own income and savings. A 1% increase in the spenddown was approved.