§ 16-46-17-3 — Duties

The duties of the council include the
following:
(1) Conduct public meetings to survey the needs of patients in
Indiana with rare diseases and their caregivers and providers.
(2) Provide testimony, comments, and recommendations
concerning legislation and rules that impact the patients in
Indiana with rare diseases.
(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.

Legislative History

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