Advocacy Priorities — Prior Years

2019 Advocacy Priorities

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

There are 470,000 children living with epilepsy in the U.S. and it’s estimated that 7,400 of those children live in Minnesota (Centers for Disease Control). For students with epilepsy, it’s important that school staff are well-equipped with the tools and knowledge to provide a safe and enriching environment. This legislation has three components:

  1. Specified school personnel complete seizure recognition and first-aid response training;
  2. Students have a Seizure Action Plan in place and available to school personnel responsible for the student; and
  3. Prescribed medication, including rescue medication, is administered to students with epilepsy by a trained nurse or staff member.

The Seizure Smart Schools legislation was heard in the House Education committee on March 6 with House Representative Dave Baker, Executive Director Heidi Fisher, and advocate Ruth Schmitz testifying.

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

Epilepsy medications are not interchangeable, and treatment of epilepsy is highly individualized. Medication changes, limitations, or denials can be extremely dangerous. We are a strong supporter of legislation that prohibits insurers from making mid-year changes to the prescription drug coverage included in healthcare plans. This legislation prohibits insurers from forcing a patient who is currently receiving a drug therapy to change drugs during the contract year and creates a community solution for providing real-time notification for drug coverage decisions.

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

Following a severe accident in 2015, Mitchell and his family came up with the idea of adding emergency contacts to an individual’s license or state identification card. This legislation creates an optional program that allows individuals to add an electronic record of emergency contacts to their license/state identification card. Records would be available to emergency responders, peace officers, and authorized emergency department staff.

Mitchell’s law is included in the recently passed transportation bill.

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

Helping the rare disease community starts with ensuring that patients and families have a voice in government. This legislation establishes a rare disease advisory council to advise state agencies on research, diagnosis, treatment, and education related to rare disease.

The Chloe Barnes Rare Disease Advisory Council passed both the House and Senate floor and was signed into law by Governor Walz.

Coalition Efforts

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

We’ve joined other organizations in supporting the expansion of Minnesota’s step therapy law, ensuring all Minnesotans are protected and have quick access to the medications they need. The Minnesota legislature unanimously approved a bill in 2018 that creates a process to allow providers to request an exception to a step therapy protocol when they believe it in their patient’s best interest. HF 815 would extend that protection to public programs such as Medical Assistance and MinnesotaCare.

Step Therapy Sign-On Letter

Expansion of Minnesota’s step therapy law is included in the recently passed health and human services bill.

Health Care Access Fund

We stand with other patient advocacy groups in supporting continued funding for the Health Care Access Fund. The program is vital to Minnesota’s health care safety-net and supports MinnesotaCare, Medical Assistance, quality improvement initiatives, and public health prevention strategies.

HCAF Sign-On Letter

The health care provider tax was preserved and made permanent at a reduced rate of 1.8%. The tax is projected to raise over $800 million during the next two years to support health programs.

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

The Best Life Alliance is working to pass legislation in 2019 that takes steps to address the severe workforce shortage impacting the critical supports accessed by over 30,000 Minnesotans with disabilities to live and work in their communities.

BLA Conference Committee Letter

A new Competitive Workforce Factor to increase wages for direct support professionals (DSPs) serving people with disabilities was passed into law. This represents an investment of over $100 million in Home & Community Based Services (HCBS) over the next four years.

Special Education

As a member of the Coalition for Children with Disabilities, we are dedicated to protecting the rights and services of children with disabilities and their families. The coalition works to address problems and concerns related to special education.

Coalition for Children with Disabilities Letter

Coalition for Children with Disabilities, Education Conference Committee

The E-12 education bill includes a 2% increase in the per pupil formula each of the next two years. A new category of special education funding called cross-subsidy reduction aid is also included, providing $90 million in funding.

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.

Advocacy Throughout the Year

Our toolkit includes detailed information on how to conduct a call with a legislator or their staff, write letters or emails to legislators, speak at town hall forums, and visit in person with your legislator.

Advocacy Toolkit