WEST virginia Legislature
2017 regular session
By
[
to the Committee on
A BILL to amend the Code
of West Virginia, 1931, as amended, by adding thereto a new article, designated
§16-5Z-1, §16-5Z-2, §16-5Z-3, §16-5Z-4, §16-5Z-5 and §16-5Z-6, all relating to
establishing an advisory council on rare diseases; creating the advisory
council and its composition; setting terms of members; defining words and
phrases; defining the duties and the powers of the advisory council; setting
out particular duties of the Secretary of the Department of Health and Human
Resources; and establishing a special revenue account
Be it enacted by the
Legislature of West Virginia:
That the Code of West
Virginia, 1931, as amended, be amended by adding thereto a new article,
designated §16-5Z-1, §16-5Z-2, §16-5Z-3, §16-5Z-4, §16-5Z-5 and §16-5Z-6, all
to read as follows:
ARTICLE 5Z. West Virginia Advisory Council on Rare
Diseases.
§16-5Z-1. Establishment and composition of West Virginia
Advisory Council on Rare Diseases.
(a) There is hereby
established the West Virginia Advisory Council on Rare Diseases to advise state
agencies on research, diagnosis, treatment and education relating to rare
diseases.
(b) The council shall
consist of ten voting members, constituted as follows:
(1) The Secretary of the
Department of Health and Human Resources or his or her designee; and
(2) Nine members who
shall be appointed by the Governor as follows:
(A) Three physicians
licensed and practicing in the state with experience researching, diagnosing or
treating rare disease;
(B) Three persons over
the age of eighteen who either have a rare disease or are a family member of a
person with a rare disease;
(C) A registered nurse
or advanced practice registered nurse licensed and practicing in the state with
experience treating rare disease;
(D) A person with an
advanced degree in public health or other health-related field who also has
experience in medical research and analytical review of medical literature,
preferably with experience in the diagnosis, treatment or physiology of rare
diseases; and
(E) A representative
from a patient-based organization or advocacy group for rare disease.
Appointments
to the advisory council shall be for terms of three years each, except that in
the initial appointments, one physician and one patient or family member shall
be appointed for a term of one year, and one physician and one patient or
family member shall be appointed for a term of two years, and the registered
nurse or advanced practice registered nurse shall initially be appointed for a
term of two years. In order to bring greater diversity of knowledge of
illnesses represented, the representative of a patient-based organization or
advocacy group may only serve one term.
All other members appointed to the advisory council may be reappointed
for an additional term.
(c) In addition to the
ten voting members of the council, the President of the Senate shall designate
a senator from the West Virginia Senate and the Speaker of the House shall
designate a delegate from the West Virginia House of Delegates, to serve on the
advisory council at the will and pleasure of the presiding officer of each
respective house of the Legislature in the capacity of an advisory member of
the council.
(d) The chairperson and
vice-chairperson of the council shall be elected from the council's membership
by a simple majority vote of the total membership of the council.
(e) Members shall serve
without compensation but shall be reimbursed by the department for reasonable
and necessary expenditures incurred in the performance of their duties as
members of the advisory council, except for the designated members of the
Legislature who shall be reimbursed by the Legislature for their reasonable and
necessary expenditures.
§16-5Z-2. Definitions.
As used in this article:
“Department” means the
West Virginia Department of Health and Human Resources;
“Rare disease” means any
disease which affects fewer than two hundred thousand people in the United
States and is known to be substantially under diagnosed and unrecognized as a
result of lack of adequate diagnostic and research information, including
diseases known as "orphan diseases” for research purposes; and
“Secretary” means the
Secretary of the West Virginia Department of Health and Human Resources.
§16-5Z-3. Duties of the advisory council.
The advisory council
shall exercise the following duties, including, but not limited to:
(1) Coordinate statewide
efforts for the study of the incidence of rare disease within the state;
(2) Act as the advisory
board to the Secretary of the Department of Health and Human Services and the
West Virginia Legislature on research, diagnosis, treatment and education
relating to rare diseases;
(3) Research and
identify priorities relating to the quality of and access to treatment and
services provided to persons with rare diseases in the state;
(4) Develop, in
conjunction and cooperation with the state’s medical schools, policy recommendations
on relating to the quality of and access to treatment and services provided to
persons with rare diseases in the state;
(5) Advise, consult and
cooperate with other offices of the Department of Health and Human Resources
and other agencies of state government in the development of information and
programs of benefit to the public and the health care community relating to the
diagnosis, treatment, and awareness of rare diseases;
(6) Identify best
practices for rare disease care as implemented in other states and at the
national level that will improve rare disease care in the state;
(7) Develop
recommendations for effective strategies to raise public awareness of rare
diseases in the state;
(8) Develop
recommendations for best practices for ensuring that health care providers are
sufficiently informed of the most effective strategies for recognizing and
treating rare diseases; and
(9) Report to the
Governor, secretary and West Virginia Legislature not later than January 1,
2018, and annually thereafter, on the activities of the advisory council and
its findings and recommendations regarding rare disease research and care in
West Virginia, including any recommendations for statutory changes and
amendments to the structure, organization and powers and duties of the advisory
council.
§16-5Z-4. Powers of the advisory council.
In order to carry out
the duties described in this article, the advisory council shall have the
following powers:
(1) To pursue and accept
gifts, grants and bequests of funds from individuals, foundations,
corporations, the federal government, governmental agencies and other
organizations or institutions to fund the activities of the advisory council;
(2) To schedule and
conduct meetings;
(3) To publish findings,
recommendations and reports on diagnosis, treatment, research and education for
rare diseases for the use and benefit of the department, other agencies of the
state, the medical community and the general public.
§16-5Z-5. Duties and powers of the secretary.
The secretary shall
provide the advisory council with administrative support reasonably necessary
for the advisory council to carry out its duties. In addition, the secretary
may make and sign any agreements and may do and perform any acts that are
necessary to receive, accept or secure gifts, grants and bequests of funds in
the name of the advisory council.
§16-5Z-6. Rare disease advisory council fund.
There is hereby created
a special revenue account in the State Treasury, to be known as the “Rare
Disease Advisory Council Information Fund,” into which gifts, grants and
bequests may be received for the use of the advisory council to carry out its
duties as specified in section three of this article. The advisory council has the
discretion to expend such moneys in this fund from collections as may be
reasonable to carry out the duties of the advisory council as are consistent
with the terms of the gifts, grants or bequests providing those moneys. The
presence of funds in this special revenue account shall not preclude the
Legislature from appropriating such funds as it may deem necessary for the use
and mission of the advisory council.
NOTE: The purpose of this bill is
to create an advisory council to educate the public and the medical community
in the recognition, diagnosis, treatment and research of rare diseases.
Strike-throughs indicate language
that would be stricken from a heading or the present law, and underscoring
indicates new language that would be added.