More than 1,000 bills and resolutions were introduced during the 45-day Utah legislative session from January 20 to March 6. The RDAC Legislative Committee screened all bills and resolutions for relevance to the rare and undiagnosed disease community and prioritized its efforts based on the RDAC Policy Guide and subject matter it deemed urgent in newly introduced legislation. This year, the RDAC followed 40 bills and focused on 15 for direct action and advocacy. Topics included pediatric safety in emergency rooms, multiple medical conditions and healthcare awareness campaigns, pharmacy benefit managers, and Medicaid and health insurance reforms. The RDAC sent letters of support or concern to bill sponsors and committee members, and Committee members attended hearings to testify about how pending legislation would impact rare patients and their families.
The RDAC’s greatest efforts and successes included several bills:
- Senate Bill 319, Health Insurance Preauthorization Amendments, which requires insurers’ response time for authorization to be consistent with federal standards and reduces redundant processes for chronic patients who have stable treatment plans;
- House Bill 270, which ends punitive noncompete business practices that harmed patients through loss of providers;
- House Bill 527, which addresses pharmacy benefit manager practices that affect the ability of independent pharmacies to provide service to customers, particularly in rural areas, thus helping these pharmacies stay in business and improving patient access to prescription medications;
- Senate Bill 127, which provides measures to improve pediatric emergency treatment safety and to monitor the care provided;
- Senate Bill 175, which improves insurance coverage for autism;
- Senate Concurrent Resolution 6, which encourages awareness of and insurance coverage for autonomic nervous system disorders; and
- Senate Joint Resolution 11, which recognizes January as National Blood Donor Month in Utah.
In addition, Representative Steve Eliason, who is a member of the RDAC, was instrumental in ensuring state funding to continue Medicaid services, despite cutbacks in federal funding.
The RDAC plans to continue legislative advocacy throughout the calendar year by communicating with legislators about its priorities and providing input to help shape new legislation, including attending interim committee sessions. The RDAC also plans to monitor legislation that is introduced to flag issues of relevance to the rare and undiagnosed disease community for possible expressions of support or concern.