Revision: Dec. 27, 2018, 3:06 p.m.
HB 237 - AS INTRODUCED
2019 SESSION
19-0199
01/05
HOUSE BILL 237
AN ACT establishing the New Hampshire rare disease advisory council.
SPONSORS: Rep. Marsh, Carr. 8; Rep. Guthrie, Rock. 13; Rep. Knirk, Carr. 3; Rep. Kotowski, Merr. 24; Rep. Fothergill, Coos 1; Rep. Salloway, Straf. 5; Sen. Bradley, Dist 3; Sen. Rosenwald, Dist 13; Sen. Chandley, Dist 11
COMMITTEE: Health, Human Services and Elderly Affairs
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ANALYSIS
This bill establishes the New Hampshire rare disease advisory council to advise the legislature and the department of health and human services on rare diseases in New Hampshire.
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Explanation: Matter added to current law appears in bold italics.
Matter removed from current law appears [in brackets and struckthrough.]
Matter which is either (a) all new or (b) repealed and reenacted appears in regular type.
19-0199
01/05
STATE OF NEW HAMPSHIRE
In the Year of Our Lord Two Thousand Nineteen
AN ACT establishing the New Hampshire rare disease advisory council.
Be it Enacted by the Senate and House of Representatives in General Court convened:
1 New Subdivision; New Hampshire Rare Disease Advisory Council. Amend RSA 126-A by inserting after section 77 the following new subdivision:
New Hampshire Rare Disease Advisory Council
126-A:78 Definition. For the purposes of this subdivision, a rare disease means a disease affecting 200,000 people or fewer in the United States.
126-A:79 New Hampshire Rare Disease Advisory Council Established.
I. There is hereby established the New Hampshire rare disease advisory council.
II.(a) The advisory council shall consist of the following members:
(1) Two members of the house of representatives, appointed by the speaker of the house of representatives.
(2) One member of the senate, appointed by the senate president.
(3) The commissioner of the department of health and human services, or designee.
(4) A physician licensed under RSA 329, appointed by the New Hampshire Medical Society.
(5) An APRN, appointed by the New Hampshire Nurse Practitioner Association.
(6) A representative of the New Hampshire Hospital Association, appointed by the association.
(7) A representative from a health insurer issuing policies in New Hampshire, appointed by the governor.
(8) One parent or guardian of a youth with a rare disease, appointed by the governor.
(9) Two adult persons living with a rare disease that is distinct from each other's and from that of the person appointed in subparagraph (8), appointed by the governor.
(b) The council may solicit information from any person or entity the advisory council deems relevant to its quest.
III. Terms of office shall be for 3 years, except that legislative members shall serve the terms coterminous with their terms of office. No member shall serve more than 2 full consecutive terms.
IV. Members shall elect annually from among their number a chairperson and such other officers as they may determine necessary.
V. Legislative members of the advisory council shall receive mileage at the legislative rate.
VI. The advisory council shall:
(a) Advise the legislature and the department of health and human services on rare diseases in New Hampshire.
(b) Coordinate with other states rare disease advisory bodies, community-based organizations, and other public and private organizations for the purpose of ensuring greater cooperation between state and federal activities regarding the research, diagnosis, and treatment of rare diseases. Federal agencies may include, but are not limited to, the National Institutes of Health, and the United States Food and Drug Administration.
(c) Review any data on rare diseases in New Hampshire collected by the department of health and human services, including data collected under RSA 132:10-a, IV.
(d) Raise public awareness regarding rare diseases in New Hampshire.
VII. The advisory council shall make an annual report detailing its findings, including recommendations for legislation, annually commencing on or before December 1, to the governor, the speaker of the house of representatives, and the president of the senate.
2 Newborn Screening Tests. Amend RSA 132:10-a, IV to read as follows:
IV. The department shall make an annual report commencing on January 1, 2006 to the oversight committee on health and human services and the New Hampshire rare disease advisory council, established in RSA 126-A:79, relative to newborn screening tests which shall include, but not be limited to the number and type of tests performed and their fiscal impact.
3 Effective Date. This act shall take effect 60 days after its passage.