Advocacy

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Wisconsin Legislative and Regulatory

Our Watch List:

Make All Copays Count

This bill requires health insurance policies to apply amounts paid by or on behalf of an individual covered under the policy or plan for brand name prescription drugs to any cost-sharing requirement or to any calculation of an out-of-pocket maximum amount of the policy or plan.

For additional information on this bill, please visit: Wisconsin All Copays Count Coalition.

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Drug cost scale

Pharmacy Benefit Manager Regulation

This bill reduces drug costs by limiting the money Pharmacy Benefit Managers (PBMs) get from the drug supply chain, including pharmacists, patient groups, doctors, clinics, and drug companies.

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Value Based Purchasing Arrangements for Drugs

This bill allows the Department of Health Services to enter into a value-based purchasing arrangement with a drug manufacturer for purposes of the Medical Assistance program. These types of arrangements are being created to address access to gene and cell therapies.

For more information, see the Rare and Ready website.

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Asian baby and mom

Newborn Screening

This bill adds federal newborn screening recommendations to the state-required newborn screenings, granting rule-making authority, and providing an exemption from emergency rule procedures.

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Rare Disease Day

This day will be recognized February 29, 2024, as Rare Disease Day in Wisconsin.

Rare Disease Day Family
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*Provided with permission by The Bonnell Foundation in Michigan

Rare Disease Advisory Council (RDAC)

While there is not a current bill, establishing an RDAC is regularly discussed. More than 25 states have already enacted RDACs in their states.

For more on RDACs, please see video provided by our friends in Michigan.

Impact to Rare Disease

Having a state RDAC allows for a dedicated group of subject experts to be at the ready to provide important rare disease knowledge to state government bodies as needed.

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Federal Legislative and Regulatory

Our Watch List:
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The Access to Genetic Counselor Services Act

This bill provides for coverage under Medicare of genetic counseling services that are furnished by genetic counselors. Covered services include those services, as well as incidental services and supplies, that would otherwise be covered under Medicare if provided by a physician.

Impact the Rare Disease

Most rare diseases are genetic diseases and access to genetic counselors is vital in helping a family understand their disease.

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Facilitating Innovative Nuclear Diagnostics Act of 2023 (FIND Act)

The bi-partisan Facilitating Innovative Nuclear Diagnostics (FIND) Act will ensure patient access to these imaging procedures.

Resources for more information can be found at SNMMI.

Impact to Rare Disease

Treatment can be impacted if nuclear medicine scans are not available or if doctors do not offer PET or other nuclear medicine scans because reimbursement is insufficient. Unnecessary therapies, surgery, and hospital stays may result.

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