(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:
(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.
(P.A. 22-58, S. 48.)
History: P.A. 22-58 effective July 1, 2022.
See Sec. 4-38f for definition of “administrative purposes only”.
Structure Connecticut General Statutes
Title 19a - Public Health and Well-Being
Chapter 368a - Department of Public Health
Section 19a-2a. - Powers and duties.
Section 19a-4. (Formerly Sec. 19-2a). - Commissioner to organize department and adopt regulations.
Section 19a-4i. - Office of Injury Prevention.
Section 19a-4j. - Office of Health Equity.
Section 19a-4k. - Advisory Commission on Multicultural Health.
Section 19a-4l. - Office of Oral Public Health.
Section 19a-5. (Formerly Sec. 19-4). - Powers and duties of commissioner.
Section 19a-6d. - Tobacco abuse reduction and health plan.
Section 19a-6e. - Traumatic brain injury patient registry.
Section 19a-6f. - Listing of certified medical assistants.
Section 19a-6i. - School-based health center advisory committee. Members. Duties. Report.
Section 19a-6o. - Palliative Care Advisory Council. Duties. Members. Report.
Section 19a-6p. - School-based health centers. Hours. Services. Reimbursement for services.
Section 19a-6q. - Chronic disease plan.
Section 19a-6s. - Provision of vaccines by clinical medical assistants under supervision.
Section 19a-6t. - Connecticut Rare Disease Advisory Council. Duties. Members. Report.
Section 19a-6u. - School-based health center expansion grant program.
Section 19a-7b. - Health Care Access Commission.
Section 19a-7c. - Subsidized nongroup health insurance product for pregnant women.
Section 19a-7d. - Primary care direct services program.
Section 19a-7e. - Health care for uninsured pregnant women demonstration project.
Section 19a-7g. - Childhood Immunization Advisory Council.
Section 19a-7h. - Immunization information system. Regulations.
Section 19a-7i. - Extension of coverage under the maternal and child health block grant.
Section 19a-7k. - Preventive dental care pilot program.
Section 19a-7o. - Hepatitis C and HIV-related testing.
Section 19a-7p. - Public health fee. Annual reporting requirement. Appeal. Penalties. Overpayment.
Section 19a-7s. - Evaluation of data re exemptions from immunization requirements. Report.
Section 19a-7u. - Pilot program to expand behavioral health care. Grants.
Section 19a-12c. - Professional assistance program account.
Section 19a-13. (Formerly Sec. 19-4n). - Regulated professions; definitions.
Section 19a-14. (Formerly Sec. 19-4o). - Powers of department concerning regulated professions.
Section 19a-14a. - Professional licenses. Investigations and disciplinary action.
Section 19a-14b. - Radon mitigators, diagnosticians and testing companies. Regulations.
Section 19a-14c. - Provision of outpatient mental health treatment to minors.
Section 19a-16e. - Scope of practice review committees. Membership. Duties.
Section 19a-16f. - Report to General Assembly on scope of practice review processes.
Section 19a-17. (Formerly Sec. 19-4s). - Disciplinary action by department, boards and commissions.
Section 19a-17a. - Review of medical malpractice awards and certain settlements.
Section 19a-17m. - Malpractice insurance purchase program.
Section 19a-17n. - Malpractice insurance purchase program. Regulations. Limitations.
Section 19a-18. (Formerly Sec. 19-4t). - Meaning of term “licensed” for insurance purposes.
Section 19a-19. (Formerly Sec. 19-4u). - Regulation of business practices.
Section 19a-21. (Formerly Sec. 19-4w). - Disposition of licensing fees.
Section 19a-22. (Formerly Sec. 19-4x). - Actions by department, boards and commissions; appeals.
Section 19a-23. (Formerly Sec. 19-4y). - Boards and commissions; records.
Section 19a-25a. - Regulations re electronic signatures for medical records.
Section 19a-25b. - Electronic prescribing systems authorized.
Section 19a-25c. - Medical records systems: Electronic and paper formats authorized.
Section 19a-25e. - Connecticut Health Information Network plan.
Section 19a-27. (Formerly Sec. 19-7a). - Test for rubella immunity. Regulations.
Section 19a-28. (Formerly Sec. 19-8). - Toxicology laboratory.
Section 19a-29. (Formerly Sec. 19-9). - Special laboratories.
Section 19a-29a. - Environmental laboratories.
Section 19a-31a. - Microbiological and biomedical biosafety laboratories.
Section 19a-32. (Formerly Sec. 19-10). - Department authorized to receive gifts.
Section 19a-32a. - AIDS research education account. Regulations.
Section 19a-32b. - Breast cancer research and education account.
Section 19a-32n. - Information and education re umbilical cord blood collection programs.
Section 19a-32o. - Short title: Connecticut Umbilical Cord Blood Collection Program Act.
Section 19a-32p. - Legislative findings and declaration of policy.
Section 19a-32q. - Connecticut Umbilical Cord Blood Collection Board. Membership. Meetings.
Section 19a-32r. - Board to establish and administer umbilical cord blood collection program.
Section 19a-32t. - Umbilical cord blood collection account.
Section 19a-32u. - Copies of independent audits to be submitted to General Assembly.
Section 19a-32v. - Reports to Governor and General Assembly.
Section 19a-33. (Formerly Sec. 19-10a). - Regulation of traffic at department facilities.
Section 19a-36a. - Regulations concerning food operators.
Section 19a-36g. - Food code. Definitions.
Section 19a-36j. - Food inspectors. Certification. Inspections.
Section 19a-36k. - Food-borne illness or outbreak. Investigation.
Section 19a-36l. - Inspection violations. Appeal process.
Section 19a-37h. - Water companies to provide multilingual tier 1 notices.
Section 19a-38. (Formerly Sec. 19-13b). - Water company to add fluoride to water supply.
Section 19a-39. (Formerly Sec. 19-13c). - Protection of wells.
Section 19a-40. (Formerly Sec. 19-14). - Supervision of vital statistics.
Section 19a-41. (Formerly Sec. 19-15). - Compilation of vital records and statistics. Regulations.
Section 19a-42. (Formerly Sec. 19-15a). - Amendment of vital records.
Section 19a-43. (Formerly Sec. 19-15b). - Reproduction of vital records.
Section 19a-44. (Formerly Sec. 19-15c). - Matching of birth and death certificates.
Section 19a-45b. - Medical home pilot program.
Section 19a-45c. - Evaluation and report required re medical home pilot program.
Section 19a-46. (Formerly Sec. 19-17). - Expert examinations and inspections.
Section 19a-48. (Formerly Sec. 19-19). - Care for children with cerebral palsy.
Section 19a-49. (Formerly Sec. 19-19a). - Services for persons with cystic fibrosis.
Section 19a-51. (Formerly Sec. 19-20a). - Pediatric Cardiac Patient Care Fund.
Section 19a-54. (Formerly Sec. 19-21a). - Registration of children with special health care needs.
Section 19a-54a. - Registry of data on infants exposed to AIDS medication.
Section 19a-55a. - Newborn screening account.
Section 19a-55b. - Information on newborn infant safe sleep practices.
Section 19a-56. (Formerly Sec. 19-21c). - Program for prevention of erythroblastosis.
Section 19a-57. (Formerly Sec. 19-21d). - Loans for purchase of hemodialysis treatment machines.
Section 19a-58. (Formerly Sec. 19-21e). - Pamphlet concerning hearing impairments in infants.
Section 19a-59. - Program to identify infants who are hard of hearing.
Section 19a-59b. - Maternal and child health protection program.
Section 19a-59e. - Media campaign for the reduction of adolescent pregnancies.
Section 19a-59h. - Maternal mortality review program. Confidentiality of information.
Section 19a-59i. - Maternal mortality review committee.
Section 19a-60. (Formerly Sec. 19-22). - Dental services for children.
Section 19a-60a. - Dental services for children of low-income families.
Section 19a-61. (Formerly Sec. 19-22b). - Services for children suffering from diabetes.
Section 19a-62. (Formerly Sec. 19-22c). - Services for children suffering from cancer.
Section 19a-69. (Formerly Sec. 19-27). - Distribution of biologic products.
Section 19a-70. (Formerly Sec. 19-28). - Priority of distribution in emergency.
Section 19a-71. (Formerly Sec. 19-29). - Observation and treatment of certain typhoid germ carriers.
Section 19a-72a. - State-wide stroke registry.
Section 19a-73a. - Establishment of comprehensive cancer plan for state.
Section 19a-73b. - Funding sources for comprehensive cancer program.
Section 19a-74. (Formerly Sec. 19-30). - Cancer.
Section 19a-75. (Formerly Sec. 19-30b). - State aid for health career educational programs.
Section 19a-77. - “Child care services” defined. Exclusions. Additional license.
Section 19a-77a. - Child day care services in retail stores.
Section 19a-79. (Formerly Sec. 19-43d). - Regulations. Exemptions. Waivers.
Section 19a-79a. - Pesticide applications at child care facilities.
Section 19a-80g. - Child care center waiting list fees and deposits.
Section 19a-80h. - Enrollment of certain children in preschool programs.
Section 19a-81. (Formerly Sec. 19-43f). - Hearing on denial of license.
Section 19a-83. (Formerly Sec. 19-43h). - Reports of licensees.
Section 19a-85. (Formerly Sec. 19-43j). - Appeal.
Section 19a-86. (Formerly Sec. 19-43k). - Injunction against illegal operation.
Section 19a-86a. - Accepting voluntary surrender of license as resolution of disciplinary action.
Section 19a-86b. - Validity of license during investigation or disciplinary action.
Section 19a-86c. - Failure to provide written notice of proposed closure. Penalty.
Section 19a-87g. - Notification of emergency situations to licensees of day care centers.
Section 19a-88a. - Regulations concerning retired nurses.
Section 19a-88c. - Regulations re retired dentists.
Section 19a-89. (Formerly Sec. 19-46). - Change of office or residence address.
Section 19a-89a. - Database on nursing personnel.
Section 19a-89b. - Fees for pool design guidelines and food compliance guide.
Section 19a-89c. - Auricular acupuncture pilot program.
Section 19a-89d. - Nurse staffing and patient care data.
Section 19a-89e. - Development of prospective nurse staffing plan by hospitals. Report.
Section 19a-90. (Formerly Sec. 19-47). - Blood testing of pregnant women for syphilis and HIV.
Section 19a-92a. - Regulation of persons engaged in tattooing. Penalty.
Section 19a-92g. - Body piercing.
Section 19a-102. (Formerly Sec. 19-59a). - Regulation of sale of turtles.
Section 19a-102a. - Regulation of sale of turtles.
Section 19a-102b. - Importation of turtles.
Section 19a-103. (Formerly Sec. 19-60). - Control of communicable diseases in institutions.
Section 19a-104. (Formerly Sec. 19-61). - Sale of rags to be used as wiping cloths; cleaning.
Section 19a-105. (Formerly Sec. 19-62). - Public toilets.
Section 19a-106. (Formerly Sec. 19-62a). - “Restroom” defined.
Section 19a-106a. - Customer access to employee restrooms in retail establishments.
Section 19a-107. (Formerly Sec. 19-63). - Towels in hotels and public lavatories.
Section 19a-108. (Formerly Sec. 19-64). - Common drinking cups.
Section 19a-110a. - Regional lead poisoning treatment centers.
Section 19a-111a. - Lead poisoning prevention program. Lead state agency.
Section 19a-111c. - Abatement of lead in dwellings. List of encapsulant products. Regulations.
Section 19a-111d. - Regulations.
Section 19a-111e. - Federal funds for lead poisoning prevention programs.
Section 19a-111g. - Pediatric lead testing and risk assessment. Exemption.
Section 19a-111h. - Review of lead poisoning data. Regulations.
Section 19a-111i. - Report re lead poisoning prevention efforts.
Section 19a-111k. - Applicability of OSHA standards to abatement and remediation of lead hazards.
Section 19a-111l. - Guidelines on mold abatement protocols.
Section 19a-112b. - Services to victims of sexual acts.
Section 19a-112c. - Educational materials for sexual assault victims.
Section 19a-112d. - Sexual assault victims account.
Section 19a-112g. - Sexual assault forensic examiners. Responsibilities.
Section 19a-112h. - Financial assistance for victims of sexual assault.
Section 19a-112i. - Community gun violence intervention and prevention program.
Section 19a-113a. - Cardiopulmonary resuscitation certification of lifeguards.
Section 19a-115. (Formerly Sec. 19-66f). - Regulation of medical test units.
Section 19a-116. (Formerly Sec. 19-66g). - Regulation of facilities which offer abortion services.
Section 19a-121. - HIV and AIDS: Grant program.
Section 19a-121a. - AIDS: Funding to local health departments.
Section 19a-121b. - Regulations.
Section 19a-121c. - HIV and AIDS: Public information program.
Section 19a-121d. - Grants for mass mailing of report on AIDS.
Section 19a-122. - Hospice care for the homeless.
Section 19a-122a. - Hospice care for the homeless. Termination of pilot program.
Section 19a-123. - Nursing pool: Definition.
Section 19a-123b. - Nursing pool: Written agreement with health care institution.
Section 19a-123c. - Regulation of rates charged by nursing pools.
Section 19a-123d. - Aggrievement. Penalties.
Section 19a-124. - Syringe services programs.
Section 19a-124a. - Donation of vans to entities operating needle exchange programs.
Section 19a-125. - Adolescent Health Council.
Section 19a-127l. - Quality of care program. Quality of Care Advisory Committee.
Section 19a-127o. - Patient safety organizations.
Section 19a-127p. - Requirement for hospitals to contract with patient safety organization.
Section 19a-131. - Public health emergency response authority. Definitions.
Section 19a-131a. - Declaration of public health emergency by Governor.
Section 19a-131b. - Orders of quarantine or isolation. Appeal of order. Hearing.
Section 19a-131c. - Enforcement of order of quarantine or isolation.
Section 19a-131d. - Entry into quarantine or isolation premises.
Section 19a-131e. - Orders of vaccination. Appeal of order. Hearing.
Section 19a-131f. - Authorization to administer vaccinations.
Section 19a-131g. - Public Health Preparedness Advisory Committee.
Section 19a-131h. - Registration of deaths.
Section 19a-131i. - Immunity from personal liability.
Section 19a-131k. - Mandatory distribution of potassium iodide.
Section 19a-133. - Declaration of racism as a public health crisis.
Section 19a-133a. - Commission on Racial Equity in Public Health. Membership. Powers and duties.
Section 19a-133d. - Educational materials re pulse oximeters.