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Policy

The Minnesota Rare Disease Advisory Council (MNRDAC) supports and promotes public policy goals that positively impact the rare disease community. We help policymakers understand how their decisions affect the rare disease community. Read our 2024 Policy Guide.

The MNRDAC is committed to incorporating input from our community, here’s our most recent Insight Report compiled from our June 2023 listening session.

Read about a recent policy change to the 2023 Network Access bill. Effective January 1, 2024, this change allows individuals with rare diseases to go out of network for care.

For more information, contact Executive Director Erica Barnes at [email protected].

Bills We Are Supporting:

Base operational budget, structural changes to Council

SF3927 / HF3841

What it does:
Would make structural changes to the MN Rare Disease Advisory Council and fully fund the base operating budget.

How it helps the community:
Allows the Council to address its duties described in statute.

Prior Authorization Reform

SF3532 / HF3578

What it does:
Would streamline prior authorization and require reporting related to how and when prior authorization is being used.

How it helps the community:
Increases access to treatments.

Expanded coverage of rWGS

SF2445 / HF3330

What it does:
Would increase coverage for rapid whole genome sequencing for children under the age of 21.

How it helps the community:
Reduces time to diagnosis.

Ban on copay accumulator programs contained in Minnesota Debt Fairness Act

SF4065 / HF4100

What it does:
Would ensure that patient assistance programs are counted toward an individual’s cost sharing requirements.

How it helps the community:
Reduces cost sharing that is particularly burdensome for the rare disease community.

Separate reimbursement of gene therapy products from other associated costs

SF4058 / HF3664

What it does:
Would provide separate reimbursement for biological products provided in the inpatient hospital setting as part of cell or gene therapy to treat rare diseases.

How it helps the community:
Increases access to available treatments.

Minnesota Government Resource: Who Represents Me?

You can make a difference by making your voice heard by your Senator and Representative.

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