§ 23-87.1-2. Establishment.
(a) There is established in the department of health the rare disease advisory council.
(b) The purpose of the council is to provide guidance and recommendations to educate the
public, legislature, as well as other government agencies, on the needs of individuals
with rare diseases living in Rhode Island.
(c) The council shall conduct the following activities to benefit those impacted by rare
diseases in Rhode Island. The duties of the council shall include:
(1) Convene public hearings, make inquiries, and solicit comments from the general public
in Rhode Island to assist the council with a first-year landscape or survey of the
needs of rare disease patients, caregivers, and providers in the state.
(2) Provide testimony and comments on pending legislation and regulations before the legislature
and other state agencies that impact Rhode Island's rare disease community.
(3) Consult with experts on rare diseases to develop policy recommendations to improve
patient access to, and quality of, rare disease specialists, affordable and comprehensive
healthcare coverage, relevant diagnostics, timely treatment, and other needed services.
(4) Research and make recommendations to state agencies and insurers that provide services
to persons with a rare disease on the impact of prior authorization, cost-sharing,
tiering, or other utilization management procedures on the provision of treatment
and care for patients.
(5) Establish best practices and protocols to include in-state planning related to natural
disasters, public health emergencies, or other emergency declarations to enable continuity
of care for rare disease patients and ensure safeguards against discrimination for
rare disease patients are in place.
(6) Evaluate and make recommendations to implement improvements to newborn infant screening
programs.
(7) Evaluate and make recommendations to improve Medicaid coverage of drugs for rare disease
patients, including engagement with the drug utilization review board, to improve
coverage of diagnostics, and facilitate access to necessary healthcare providers with
expertise in the treatment of rare diseases.
(8) Publish a list of existing, publicly accessible resources on research, diagnosis,
treatment, and education relating to the rare diseases on the council's website. For
purposes of this chapter, "rare disease� or "orphan disease� means a disease that
affects fewer than two hundred thousand (200,000) people in the United States.
(9) Identify areas of unmet need for research and opportunities for collaboration across
stakeholders that can inform future studies and reports by the council.
(10) Identify and distribute educational resources for healthcare providers to foster recognition
and optimize treatment of rare diseases.
(11) Research and identify best practices to reduce health disparities and achieve health
equity in the research, diagnosis, and treatment of rare diseases.
(12) Research and identify best practices to ensure continuity of care for rare disease
patients transitioning from child/youth services to adult care.