HB2187 H H&HR AM #1

CR 3338

The Committee on Health and Human Resources moved to amend the bill on page 1, by striking everything after the enacting clause and interesting in lieu thereof the following:

“That the Code of West Virginia, 1931, as amended, be amended by adding thereto a new article, designated §16-5Z-1, §16-5Z-2 and §16-5Z-3, 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 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 consist of:

(1) The Commissioner of the Bureau or his or her designee; and

(2) Ten members who shall be appointed by the Secretary as follows:

(A) Three physicians licensed and practicing in the state with experience researching, diagnosing or treating rare disease;

(B) Two medical researchers with experience conducting research concerning rare diseases;

(C) 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;

(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.

(e) Members shall serve without compensation.

§16-5Z-2.  Definitions.

As used in this article:

“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.

§16-5Z-3.  Duties of the advisory council.

The advisory council shall:

(1) Research and identify priorities relating to the quality of and access to treatment and services provided to persons with rare diseases in the state;

(2) Develop policy recommendations on relating to the quality of and access to treatment and services provided to persons with rare diseases in the state;

(3) 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;

(4) Develop recommendations for effective strategies to raise public awareness of rare diseases in the state;

(5) Report to the Governor, Secretary and Legislative Oversight Commission on Helath and Human Resources Accountability not later than November 1, 2017, 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 legislative rule or policy changes.

(6) The advisory council is discontinued on December 1, 2017.

Adopted

Rejected