SECTION 1. Chapter 111 of the General Laws is hereby amended by adding the following section:-
Section 230. (a) For the purposes of this section, the following words shall have the following meanings, unless the context clearly requires otherwise:-
"Rare disease shall mean any disease which affects fewer than 200,000 people in the United States, which has status as an "orphan"disease for research purposes, or is known to be substantially under diagnosed and unrecognized as a result of lack of adequate diagnostic and research information."
“Rare disease care”, shall mean the academic research of a rare disease or the medical treatment of individuals diagnosed with a rare disease.
(b) (1) The commissioner of the Department of Public Health shall appoint a rare disease advisory council to coordinate statewide efforts for the study of the incidence of rare disease within the commonwealth and the status of the rare disease community. The advisory council shall consist of the following members: the commissioner, or a designee from the department of Public Health, who shall serve as chair; up to 11 physicians actively involved in rare disease care, from among the following fields: Pediatrician, Primary Care Doctor, Emergency Care Doctor, Geneticist, Metabolic Specialist, Psychologist, Gastroenterologist, Neurologist, Cardiologist, Hematologist, and Orthopedic Physician; 1 registered nurse or nurse practitioner actively involved in rare disease care; 1 hospital administrator, or a designee, from each hospital in the commonwealth actively involved in rare disease care; 2 representatives from the department of public health actively involved in providing public education on rare disease or chronic disease ; 1 representative from a rehabilitation facility that provides rare disease care; 2 rare disease survivor over the age of 18; 2 caregiver of a rare disease survivor under the age of 18; 1 representative from the Rare Disease United Foundation of Massachusetts; 1 representative from Rare New England; 1 representative from the Coalition for Pediatric Pain; 1 representative from an accountable care organization certified by the health policy commission; 1 representative from a health care organization involved in rare disease care, which predominantly serves minority or underserved populations; 1 representative from each licensed health care agency category that provides care for rare disease survivors; 1 representative from an organization that provides respite care services for caregivers of rare disease survivors; and 1 educator licensed in the commonwealth, who provides or coordinates educational services for rare disease survivor under the age of 18; 1 representative from the New England Newborn Screening Program.
(2) Each member of the advisory council shall only serve for a term of 3 years. The advisory council shall meet periodically, but at least 4 times annually. The members of the advisory council shall serve without compensation; provided, however that the members shall be reimbursed for actual expenses reasonably incurred in the performance of their duties as members. The commissioner shall provide the advisory council with suitable accommodations for its meetings and may, subject to appropriation, provide administrative support to assist the advisory council.
(c) The advisory council shall advise the general court, the governor, and the commissioner on the incidence of rare disease within the commonwealth and the status of the rare disease community. To achieve its purpose, the advisory council shall:
(1) Undertake a statistical and qualitative examination of the incidence and causes of rare disease and develop a profile of the social and economic burden of rare disease in the commonwealth;
(2) Receive and consider reports and testimony from individuals, the department, community-based organizations, voluntary health organizations, healthcare providers, and other public and private organizations within the commonwealth, or recognized nationally as having expertise in rare disease care, in order to learn about their contributions to rare disease care and possibilities for the improvement of rare disease care in the commonwealth;
(3) Develop methods to publicize the profile of the social and economic burden of rare disease in the Commonwealth;
(4) Identify research-based strategies effective in preventing and controlling risks of co-morbidities for rare disease, based on available scientific evidence a;
(5) Determine the impact that delayed or inappropriate treatment of rare disease has on the quality of patients’ lives and the associated economic burden on both patients and the Commonwealth;
(6) Study the economic burden of early treatment of rare disease with regard to quality of care, insurance reimbursement, rehabilitation, and related services;
(7) Determine best practices for ensuring that the public and healthcare providers are sufficiently informed of the most effective strategies for recognizing and treating rare disease;
(8) Evaluate the current system of rare disease treatment to develop recommendations to increase rare disease survival rates and improve quality of life;
(9) Research and determine the most appropriate method to collect rare disease data, which shall include a record of the cases of rare disease occurring in the commonwealth and such information concerning these cases as the advisory committee deems necessary and appropriate to conduct thorough and complete epidemiological surveys of rare disease diagnosed in the commonwealth, subject to all applicable privacy laws and protections;
(10) Identify best practices for rare disease care from other states and at the national level that will improve rare disease care in the commonwealth, including the feasibility of, and a proposed structure for, developing a rare disease information and patient support network in the commonwealth;
(11) Identify and obtain any sources of public or private funding available to improve rare disease care in the commonwealth or to advance the mission of the advisory council;
(12) Develop a registry of all rare diseases diagnosed within the commonwealth to aid in determining any genetic or environmental contributors to rare diseases; and
(13) Develop and maintain a comprehensive rare disease plan for the commonwealth, which shall utilize any information and materials received or developed by the advisory council pursuant to paragraphs (1) to (12), inclusive, and which shall include information specifically directed toward the general public, state and local officials, state agencies, private organizations and associations, and businesses and industries.
(c) Notwithstanding any general or special law to the contrary, the advisory council may request and receive medical records and information otherwise considered confidential; provided, that no medical records or information provided to the advisory committee shall contain any individually identifiable patient information. Such records or information received by the advisory council shall not be considered public records as defined in section 7 of chapter 4.
(d) The advisory council may apply for and receive on behalf of the commonwealth any funds, including appropriations, grants, bequests, gifts or contributions, from any source, which shall be deposited in a separate account and may be expended by the majority vote of the council, without further appropriation, in accordance with chapter 29 and any rules or regulations promulgated thereunder.
(e) On or before March 1, 2016, the advisory council shall provide a preliminary report to the general court, the governor, and state agencies by filing the same with the clerks of the house of representatives and the senate and the executive office for administration and finance. The preliminary report shall include, but is not limited to, an estimate the financial, informational and other resources needed to achieve the goals and duties of the advisory council.
(f) On or before March 1, 2016, and annually thereafter, the advisory council shall file a report with the clerks of the house of representatives and the senate and the executive office for administration and finance, which shall include, but is not limited to: (i) a summary of the current state of comprehensive rare disease plan for the commonwealth; (ii) those actions taken and progress made toward achieving implementation of the comprehensive rare disease plan; (iii) an accounting of all funds received by the council, and the source of those funds; (iv) an accounting of all funds expended by the council; and (iv), to the extent practicable, an estimate of any cost savings on the part of individuals and the commonwealth that will occur upon full implementation of the comprehensive rare disease plan and accompanying programs.
SECTION 2. The rare disease advisory council established by section 230 of chapter 111 of the General Laws shall have its
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