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2023 Regular Session
HOUSE CONCURRENT RESOL UTION NO. 92
BY REPRESENTATIVE HUGHES
A CONCURRENT RESOL UTION
To urge and request the Louisiana Department of Health to ensure timely access to gene
therapy to the extent necessary to study the feasibility of funding gene therapy for
all sickle cell patients via Medicaid.
WHEREAS, sickle cell anemia is a genetic disease that, according to the Centers for
Disease Control and Prevention, affects approximately one in every three hundred sixty-five
African American babies; and
WHEREAS, the state of Louisiana, through its recent efforts to create a statewide
registry of sickle cell patients, estimates that there are thousands of Louisiana residents with
sickle cell anemia; and
WHEREAS, in 2020, over one thousand four hundred individuals in Louisiana were
hospitalized for symptoms related to sickle cell anemia with an average hospital stay of
thirty days; and
WHEREAS, research shows that one in every ten children with sickle cell anemia
will have a symptomatic stroke by the age of twenty; and
WHEREAS, until recently, the only means of a cure for sickle cell anemia was a
bone marrow transplant; however, statistics show that very few patients are medically
eligible for such a procedure; and
WHEREAS, recent breakthroughs in medical research have led to new gene therapy
treatments that could save the lives of sickle cell patients; and
WHEREAS, such medical advancements could soon be approved by the United
States Food and Drug Administration by the end of the 2023 calendar year; and
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WHEREAS, while gene therapy is believed to cure sickle cell disease and the
symptoms resulting therefrom, such therapy is predicted to be costly; and
WHEREAS, a financing mechanism to provide this care is needed as the projected
cost of the treatment is over one million dollars per patient; and
WHEREAS, the state has used innovative financing models to provide critical access
for other high cost medications, such as those needed for patients with hepatitis C; and
WHEREAS, the state's financing models for such services could serve as a model for
financing similar arrangements for patients with sickle cell anemia; and
WHEREAS, implementation of this potentially life-saving treatment could lead to
a substantially improved quality of life for thousands of Louisiana residents.
THEREFORE, BE IT RESOLVED that the Legislature of Louisiana does hereby
urge and request the Louisiana Department of Health to ensure timely patient access to gene
therapies utilizing any and all available, innovative payment arrangements and
methodologies for the Medicaid program to study the feasibility of funding gene therapy for
all sickle cell patients via Medicaid without causing any delay in patient access to treatments
that may become available in the near term.
BE IT FURTHER RESOLVED that the Louisiana Department of Health shall
develop findings and recommendations concerning this topic and submit its findings in the
form of a written report to the House Committee on Health and Welfare, Senate Committee
on Health and Welfare, and the David R. Poynter Legislative Research Library no later than
thirty days prior to the convening of the 2024 Regular Session.
BE IT FURTHER RESOLVED that a copy of this Resolution be transmitted to the
secretary of the Louisiana Department of Health.
SPEAKER OF THE HOUSE OF REPRESENTATIVES
PRESIDENT OF THE SENATE
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