(a) On and after July 1, 2023, there is established a Connecticut Rare Disease Advisory Council. The council shall advise and make recommendations to the Department of Public Health and other state agencies, as appropriate, regarding the needs of persons in the state living with a rare disease and such persons’ caregivers. The council may perform the following functions:

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(1) Hold public hearings and otherwise make inquiries of and solicit comments from the general public to assist with a study or survey of persons living with a rare disease and such persons’ caregivers and health care providers;

(2) Consult with experts on rare diseases to develop policy recommendations for improving patient access to quality medical care in the state, affordable and comprehensive insurance coverage, medications, medically necessary diagnostics, timely treatment and other necessary services and therapies;

(3) Research and make recommendations to the department, other state agencies, as necessary, and health carriers that provide services to persons living with a rare disease regarding the adverse impact that changes to health insurance coverage, drug formularies and utilization review, as defined in section 38a-591a, may have on the provision of treatment or care to persons living with a rare disease;

(4) Research and identify priorities related to treatments and services provided to persons living with a rare disease and develop policy recommendations regarding (A) safeguards and legal protections against discrimination and other practices that limit access to appropriate health care, services or therapies, and (B) planning for natural disasters and other public health emergencies;

(5) Research and make recommendations regarding improving the quality and continuity of care for persons living with a rare disease who are transitioning from pediatric to adult health care services;

(6) Research and make recommendations regarding the development of educational materials on rare diseases, including, but not limited to, online educational materials and a list of reliable resources for the department, other state agencies, as necessary, the public, persons living with a rare disease, such persons’ families and caregivers, medical school students and health care providers; and

(7) Research and make recommendations for support and training resources for caregivers and health care providers of persons living with a rare disease.

(b) The council shall consist of the following members:

(1) The Commissioner of Public Health, or the commissioner’s designee;

(2) The Commissioner of Social Services, or the commissioner’s designee;

(3) The Insurance Commissioner, or the commissioner’s designee, who may be the representative of a health carrier;

(4) Two appointed by the Governor, one of whom shall be a representative of an association of hospitals in the state or an administrator of a hospital that provides health care to persons living with a rare disease, and one of whom shall be a physician licensed under chapter 370 who has expertise in the field of medical genetics;

(5) Two appointed by the Senate chairperson of the joint standing committee of the General Assembly having cognizance of matters relating to public health, one of whom shall be a representative of a patient advocacy group in the state representing all rare diseases, and one of whom shall be the family member or caregiver of a pediatric patient living with a rare disease;

(6) Two appointed by the House chairperson of the joint standing committee of the General Assembly having cognizance of matters relating to public health, one of whom shall be a representative of the biopharmaceutical industry who is involved in rare disease research and therapy development, and one of whom shall be an adult living with a rare disease;

(7) Two appointed by the Senate ranking member of the joint standing committee of the General Assembly having cognizance of matters relating to public health, one of whom shall be a member of the scientific community in the state who is engaged in rare disease research, and one of whom shall be the caregiver of a child or adult living with a rare disease; and

(8) Two appointed by the House ranking member of the joint standing committee of the General Assembly having cognizance of matters relating to public health, one of whom shall be a physician licensed to practice under chapter 370 who treats persons living with a rare disease, and one of whom shall be a representative, family member or caregiver of a person living with a rare disease.

(c) All initial appointments to the council shall be made not later than October 31, 2023. Any vacancy shall be filled by the appointing authority. Except for members of the council who represent state agencies, five of the members first appointed shall serve for a term of two years, five of such members shall serve for a term of three years and, thereafter, members shall serve for a term of two years. The Commissioner of Public Health shall determine which of the members first appointed shall serve for a term of two years and which of such members shall serve for a term of three years. The members of the council shall receive no compensation for their services but may be reimbursed for any necessary expenses incurred in the performance of their duties. The commissioner shall select an acting chairperson of the council from its members for the purpose of organizing the first council meeting. Such chairperson shall schedule and convene the first meeting, which shall be held not later than November 30, 2023. The members of the council shall appoint, by majority vote, a permanent chairperson and vice-chairperson during the first meeting of the council. Nothing in this subsection shall prohibit the reappointment of the chairperson, vice-chairperson or any member of the council to their position on the council.

(d) The council shall meet in person or on a remote platform not less than six times between November 30, 2023, and October 31, 2024, as determined by the chairperson. Thereafter, the council shall meet quarterly in person or on a remote platform, as determined by the chairperson.

(e) The council shall provide opportunities at council meetings for the general public to make comments, hear updates from the council and provide input on council activities. The council shall create an Internet web site where meeting minutes, notices of upcoming meetings and feedback may be posted.

(f) The council shall be within the Department of Public Health for administrative purposes only.

(g) Not later than one year after the date of its first meeting, and annually thereafter, the council shall report to the Governor and, in accordance with the provisions of section 11-4a, to the joint standing committee of the General Assembly having cognizance of matters relating to public health regarding its findings and recommendations, including, but not limited to, (1) the council’s activities, research findings and any recommendations for proposed legislative changes, and (2) any potential sources of funding for the council’s activities, including, but not limited to, grants, donations, sponsorships or in-kind donations.