§1125.1. Louisiana Sickle Cell Commission
A. There shall be established within the Louisiana Department of Health a
commission designated the "Louisiana Sickle Cell Commission", composed of seventeen
members as provided in Subsection B of this Section. No organization, entity, or individual
shall be a member unless expressly provided for in Subsection B of this Section.
B.
(1)Thirteen members shall be appointed by the governor, subject to Senate
confirmation, as follows:
(a)One member from a list of nominees submitted by the Sickle Cell Center of
Southern Louisiana, Tulane University School of Medicine, which has provided health care
to patients with sickle cell disease since 1979 and houses the only life span clinic, which
provides care to patients from birth to death, and a transition c
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§1125.1. Louisiana Sickle Cell Commission
A. There shall be established within the Louisiana Department of Health a
commission designated the "Louisiana Sickle Cell Commission", composed of seventeen
members as provided in Subsection B of this Section. No organization, entity, or individual
shall be a member unless expressly provided for in Subsection B of this Section.
B.(1) Thirteen members shall be appointed by the governor, subject to Senate
confirmation, as follows:
(a) One member from a list of nominees submitted by the Sickle Cell Center of
Southern Louisiana, Tulane University School of Medicine, which has provided health care
to patients with sickle cell disease since 1979 and houses the only life span clinic, which
provides care to patients from birth to death, and a transition clinic, which provides a
seamless transition during the high risk death gap period from pediatric to adult care.
(b) One member from a list of nominees submitted by Children's Hospital, New
Orleans, which is the only hospital in this state to provide stem cell and gene therapies to
patients with sickle cell disease and focuses on sickle cell pediatric hematology.
(c) One member from a list of nominees submitted by the Louisiana Primary Care
Association.
(d) One member from a list of nominees submitted by the Sickle Cell Association
of South Louisiana, which has served eleven parishes in south Louisiana since 1974 and has
the historical and institutional knowledge of patient care within the community.
(e) One member from a list of nominees submitted by the Northeast Louisiana Sickle
Cell Anemia Technical Resource Foundation, Inc, which has served northeast Louisiana
since 1979 and has the historical and institutional knowledge of patient care within the
community.
(f) One member from a list of nominees submitted by the Sickle Cell Disease
Association of America, Inc., Northwest Louisiana Chapter, which has served northwest
Louisiana since 1974 and has the historical and institutional knowledge of patient care within
the community.
(g) One member from a list of nominees submitted by the Sickle Cell Anemia
Research Foundation, Alexandria, which has served twelve parishes in central Louisiana
since 1974 and has the historical and institutional knowledge of patient care within the
community.
(h) One member from a list of nominees submitted by Southwest Louisiana Sickle
Cell Anemia, Inc., which has served southwest Louisiana and has the historical and
institutional knowledge of patient care within the community.
(i) Five members from a list of nominees submitted by the Louisiana Department of
Health, two of whom shall be persons diagnosed with sickle cell disease, one of whom shall
be a parent of a person diagnosed with sickle cell disease, and two of whom shall be medical
professionals who provide treatment and care to patients diagnosed with sickle cell disease.
(2) Two of the members shall be as follows:
(a) The secretary of the Louisiana Department of Health or his designee.
(b) The Medicaid director of the Louisiana Department of Health or his designee.
(3) Two members shall be appointed as follows:
(a) One member of the Louisiana Senate appointed by the president of the Senate.
(b) One member of the Louisiana House of Representatives appointed by the speaker
of the House of Representatives.
(4) Each appointment by the governor shall serve at his pleasure. The legislative
members shall serve at the pleasure of the presiding officer of the respective legislative body.
(5) The term of an appointee shall be four years. Any vacancy occurring in board
membership shall be filled for the remainder of the unexpired term in the same manner as
the original appointment.
(6) Nonlegislative members of the commission shall not be entitled to a per diem or
any other compensation for their service but shall be entitled to reimbursement of any
necessary and reasonable expense incurred in the performance of their duties on the panel,
including travel expenses. Each legislative member of the commission shall receive a per
diem and travel expenses equal to the per diem and travel expenses provided by law for
members of the legislature.
(7) Meetings of the commission shall be held at the call of the chairman or on a
petition of at least five members of the commission.
(8) At the first meeting of the commission, each year after its members assume their
positions, the members shall select one of the commission members to serve as chairman and
one of the commission members to serve as vice chairman, and each shall serve for a term
of one year. The chairman shall preside at meetings of the commission, and in his absence,
the vice chairman shall preside.
(9) The commission shall hold at least four regular meetings each year. The
commission shall meet at locations that rotate throughout the state, as determined by the
chairman, to provide ease of travel for the members of the commission.
(10) The appointment of the initial members of the commission shall take place no
later than October 1, 2013, and the commission shall convene its first meeting no later than
November 1, 2013.
C. The Louisiana Department of Health shall provide administrative assistance to
and serve as staff for the commission.
D. The functions of the commission shall be to:
(1) Ensure the delivery of sickle cell services to affected persons in all parishes in
Louisiana and assist in establishing geographical service delivery boundaries.
(2) Promulgate guidelines for creating uniformity in the delivery of services and the
management of statewide programs.
(3) Submit budget recommendations to the legislature and the governor.
(4) Prepare and publish an annual report on sickle cell that includes:
(a) An assessment of the programs and activities aimed at sickle cell.
(b) A description of the level of coordination existing between the state and private
stakeholders in the management and treatment of sickle cell.
(c) The development of a detailed action plan for battling sickle cell.
(5) Direct the Sickle Cell Patient Navigator Program established by the provisions
of R.S. 40:1125.21.
(6) Apply for grants and donations from any public or private source to implement
the provisions of this Subsection.