Bill Text: CT HB06580 | 2015 | General Assembly | Comm Sub
Bill Title: An Act Creating An Advisory Council On Rare Diseases.
Spectrum: Committee Bill
Status: (Introduced - Dead) 2015-04-07 - File Number 465 [HB06580 Detail]
Download: Connecticut-2015-HB06580-Comm_Sub.html
General Assembly |
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January Session, 2015 |
*_____HB06580PH____032415____* |
AN ACT CREATING AN ADVISORY COUNCIL ON RARE DISEASES.
Be it enacted by the Senate and House of Representatives in General Assembly convened:
Section 1. (NEW) (Effective July 1, 2015) (a) There is established an advisory council on rare diseases to advise the Commissioner of Public Health on research, diagnosis, treatment and education relating to rare diseases. For purposes of this section, "rare disease" has the same meaning as provided in 21 USC 360bb, as amended from time to time.
(b) The advisory council shall consist of the following members, who shall be appointed by the Commissioner of Public Health:
(1) Five physicians licensed and practicing in the state with experience researching, diagnosing or treating rare diseases and representing each of the following specialties:
(A) Neurology or neurological surgery;
(B) Cardiology or cardiovascular surgery;
(C) Orthopedics or orthopedic surgery;
(D) Internal medicine; and
(E) Emergency medicine;
(2) A medical researcher with experience conducting research concerning rare diseases;
(3) A registered nurse or advanced practice registered nurse licensed and practicing in the state with experience treating rare diseases;
(4) One hospital administrator from each hospital in the state that provides care to persons diagnosed with a rare disease, or such administrator's designee;
(5) One rare disease survivor over the age of eighteen;
(6) One caregiver of a pediatric rare disease survivor; and
(7) A representative of the National Organization for Rare Disorders.
(c) The chairpersons of the joint standing committee of the General Assembly having cognizance of matters relating to public health, or the chairpersons' designees, shall be members of the advisory council.
(d) The Commissioner of Public Health, or the commissioner's designee, shall be an ex-officio, nonvoting member of the advisory council and shall attend all meetings of the advisory council.
(e) Any member of the advisory council under subsection (c) of this section may be a member of the General Assembly.
(f) All appointments to the advisory council shall be made not later than thirty days after the effective date of this section. Members appointed pursuant to subsection (b) of this section shall serve for a term of three years and no member shall serve more than two consecutive terms.
(g) Members shall receive no compensation except for reimbursement for necessary expenses incurred in performing their duties.
(h) The Commissioner of Public Health shall schedule the first meeting of the advisory council, which shall be held not later than September 1, 2015. The members shall elect the chairperson of the advisory council from among the members of the council. A majority of the council members shall constitute a quorum. A majority vote of a quorum shall be required for any official action of the advisory council. The advisory council shall meet upon the call of the chairperson or upon the request of a majority of council members.
(i) Not later than January 1, 2016, and annually thereafter, the advisory council shall report, in accordance with the provisions of section 11-4a of the general statutes, to the joint standing committee of the General Assembly having cognizance of matters relating to public health. Such report shall include, but need not be limited to, recommendations concerning: (1) Practice guidelines for the diagnosis and treatment of rare diseases; (2) mechanisms to increase clinical awareness and education regarding rare diseases; (3) outreach to educators to increase awareness of rare diseases; and (4) development of a network of volunteer experts on the diagnosis and treatment of rare diseases.
This act shall take effect as follows and shall amend the following sections: | ||
Section 1 |
July 1, 2015 |
New section |
Statement of Legislative Commissioners:
In Section 1(f), "Members shall serve for a term of three years" was changed to "Members appointed pursuant to subsection (b) of this section shall serve for a term of three years" for clarity and accuracy.
PH |
Joint Favorable Subst. -LCO |