(1) Conduct public meetings to survey the needs of patients in Indiana with rare diseases and their caregivers and providers.

(3) After consulting with experts on rare diseases, develop policy recommendations to improve patient access to and the quality of:

(A) rare disease specialists;

(B) affordable and comprehensive health care coverage;

(C) relevant diagnostics;

(D) timely treatment; and

(E) other needed services for patients with rare diseases.

(4) Research and make recommendations to state agencies and insurers that provide services to persons with rare diseases on the impact of prior authorization, cost sharing, tiering, or other utilization management procedures on the provision of treatment and care for patients.

(5) Evaluate and make recommendations to improve Medicaid coverage of drugs for patients with rare diseases to improve coverage of diagnostics, and facilitate access to necessary health care providers with expertise in the treatment of rare diseases.

(6) Publish a list of existing, publicly accessible resources on research, diagnosis, treatment, and education relating to rare diseases on the state department’s website.

(7) Evaluate the current status and funding of pediatric cancer research taking place in Indiana and how the research interacts with the landscape of pediatric cancer research done nationally.

(8) Study other issues and provide grants that impact patients with rare diseases.

As added by P.L.129-2023, SEC.2.