Policy Committee Meeting

Approval of previous meeting minutes

Action: Dawn Stenstrom made a motion to approve February meeting minutes, seconded by Kerry Hansen.  January minutes Approved. 3/3 RB Abstaining

Executive Director Update

Director Barnes is in a conference and Natalie Schmidt presented the legislative updates.

Lead Bills

MN Rare Disease Advisory Council Funding (HF 1501/ SF 2037)

Bill Summary

Fully fund the MN Rare Disease Advisory Council base operating budget to allow the Council to address its duties described in statute.

Impact

Allows the Council to address its duties described in statute.

Next Steps

RDAC is working with Senate Health and Human Services Committee administrator to request a hearing. Additionally, adding advocate testimony to RDAC funding one-pager to underscore the importance.

Lead Author & Co authors

House: Rep. Murphy

• Rep. Reyer
• Rep. Bierman
• Rep. Torkelson
• Rep. Schomacker
• Rep. Youakim
• Rep. Zeleznikar

Senate: Sen. Boldon

• Sen. Mann
• Sen. Abler
• Sen. Coleman
• Sen. Hoffman

Status

Referred to Health Finance and Policy Committee

• Hearing 3/5/25
• Laid over

Working on adding bill to senate health and human services committee hearing.

Presumptive Eligibility for Medicaid for children identified by a positive newborn screen (HF 1502/ SF 1175)

Bill Summary

SF 1175 expands Minnesota’s existing Hospital Presumptive Eligibility (HPE) program to allow a presumptive eligibility determination for Medical Assistance (MA) for these infants, as well as for those with a Social Security Administration (SSA) Compassionate Care Allowance determination. This bill also includes presumptive eligibility for adults requiring a disability determination before discharge to a long-term care facility.

Impact

Allows delivery of urgent medical interventions without delays related to lack of clarity on insurance.

Next Steps

Working to get House Health Finance and Policy committee hearing. Also working to have additional co-sponsors sign on in support.

Lead Author & Co authors

House: Rep. Reyer

• Rep. Murphy
• Rep. Elkins
• Rep. Hemmingsen-Jaeger
• Rep. Bierman
• Rep. Franson

Senate: Sen. Boldon

• Sen. Kupec
• Sen. Coleman
• Sen. Miller
• Sen. Nelson

Status

Passed Human Services. Referred to Health and Human Services Committee.

• Hearing 3/4/25
• Referred back to Human Services Committee

Working on adding bill to House Health Finance and Policy committee hearing.

Drug Formulary Committee Modifications (SF 2645)

Bill Summary

This bill requires the drug formulary committee to create a public comment process for drug recommendations and strengthens the role of the Minnesota Rare Disease Advisory Council in reviewing orphan drug policies.

Impact

Ensures that patients and providers have a stronger voice in formulary decisions, that rare disease expertise is embedded in policymaking, and that barriers to life-saving treatments are reduced.

Next Steps

Working to get hearing in Senate Health and Human Services. Representative Huot will introduce house version soon.

Lead Author & Co authors

Senate: Sen. Boldon

• Sen. Kupec
• Sen. Lieske

Status

Senate file referred to Health and Human Services.

Removing payers’ ability to prohibit the use of patient assistance programs to go toward an individual’s cost sharing (HF 1808/SF 0628)

Bill Summary

This bill bans copay accumulator programs by requiring health insurance plans to count any payments made by patients or on their behalf—such as manufacturer copay assistance—toward their out-of-pocket maximums and cost-sharing requirements. This ensures patients receive the full benefit of financial assistance and reach their cost limits more fairly.

Impact

Reduces cost sharing that is particularly burdensome for the rare disease community

Next Steps

Sending advocate letters of support to Chair Klein urging for a Senate hearing.

Lead Author & Co authors

Senate: Sen. Boldon

• Sen. Kunesh
• Sen. Mann

Status

Referred to Commerce and Consumer Protection Committee.

Gathering advocate letters to send to Commerce and Consumer Protection Chair Klein to request a hearing.

Support Bills

Inherited metabolic diseases coverage by health plans requirement provision (SF 1023)

Bill Summary

This bill requires health insurance plans and Medical Assistance in Minnesota to cover medically necessary treatments for inherited metabolic diseases, including medical foods and specially formulated low-protein food products, without additional restrictions or cost-sharing.

Impact

Expands health insurance coverage for medical foods so individuals with inherited metabolic diseases have greater access to specialty medical foods without additional cost-sharing.

Lead Author & Co authors

Senate: Sen. Lieske

• Sen. Hoffman
• Sen. Draheim
• Sen. Mann
• Sen. Abeler

Status

Referred to Commerce and Consumer Protection Committee.

Augmentative and alternative communication systems coverage requirement provision and appropriation (SF 1101)

Bill Summary

This bill requires health insurance plans and Medical Assistance in Minnesota to cover augmentative and alternative communication (AAC) systems for individuals with severe speech limitations, including necessary devices, repairs, and therapy, without additional financial or coverage restrictions.

Impact

Expands health insurance coverage for AAC systems so individuals with severe speech limitations can have greater access to assistive technologies.

Lead Author & Co authors

Senate: Sen. Wiklund

• Sen. Boldon
• Sen. Abeler

Status

Referred to Commerce and Consumer Protection Committee.

Addition of MLD to the newborn screening tests (HF 1029/ SF 1494)

Bill Summary

This bill requires the inclusion of Metachromatic Leukodystrophy (MLD) to be added to the list of tests to be administered for determining the presence of a heritable or congenital disorder.

Impact

Expands newborn screening to include MLD to the list of tests administered allowing for early detection and intervention.

Lead Author & Co authors

Senate: Sen. Miller

• Sen. Boldon
• Sen. Coleman
• Sen. Housley
• Sen. Hoffman

House: Rep. Torkelson

• Rep. Schomacker
• Rep. Reyer
• Rep. Bierman
• Rep. Franson
• Rep. Hemmingsen Jaeger
• Rep. Stephenson
• Rep. Tabke

Status

Referred to Senate Health & Human Services

• Included in hearing 3/18. Laid over

Referred to House Health Finance & Policy Committee

• Included in hearing 3/12. Laid over

Action Item – Please have the Bill numbers ready for the Full Council meeting on April 10, 2025.

Old Business

Support Criteria Update

The PSC had given the Executive Director criteria that give her guidelines for policy decisions. The RDAC PSC has requested that this flowchart should be reviewed each legislative session.

New Business

Parent Bill of Right’s HF22

A member of the Full Council approached RDAC regarding a letter of support in relation to the newborn screening implications of the bill. The bill was presented to the committee. In reviewing the bill, the committee had some difficulty determining what part of this bill RDAC can support. In reviewing the Policy Engagement Decision Criteria, it will be difficult to fit this bill, as it stands, we will not be able to support this bill.

Motion: Dawn Stenstrom made a motion to withhold support for HF22 as it does not fit within the RDAC engagement criteria. Motion seconded by Kerry Hansen. 4/4 Motion Approved.

A suggestion was made that we create a form that will capture information as requests for support for legislative policy is requested.

Public Comment

Hearing none.