2021 Regular Session ENROLLED
SENATE CONCURRENT RESOL UTION NO. 66
BY SENATOR BARROW
A CONCURRENT RESOL UTION
To urge and request the Louisiana Department of Health to address regulatory barriers that
impede patient access to novel therapies for sickle cell disease, and to work to ensure
that sickle cell patients in the Louisiana Medicaid program have access to potentially
curative therapies.
WHEREAS, sickle cell anemia and sickle cell disease, used interchangeably, refer
to a group of inherited disorders that affect the red blood cells; and
WHEREAS, the National Institutes of Health is working on innovative genetic
therapies that could someday cure sickle cell disease; and
WHEREAS, the Food and Drug Administration has granted orphan drug designation
to sickle cell therapies to provide incentives and encouragement for development, and at the
end of 2019, granted accelerated approval for a new treatment for sickle cell disease; and
WHEREAS, sickle cell disease can be a life-threatening condition and access to
comprehensive health care may be limited by social, economic, cultural, and geographic
barriers; and
WHEREAS, nationwide, more than seventy percent of patients with sickle cell
disease are insured under state Medicaid programs; and
WHEREAS, historically and continuing today, the sickle cell disease patient
community has been medically underserved, a fact which President Richard Nixon
recognized in 1972 when he signed the Sickle Cell Anemia Control Act into law; and
WHEREAS, while there is no widely available cure for sickle cell disease, one-time
gene therapies, including gene editing therapeutic approaches, are being developed which
may offer potential cures for some patients; and
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WHEREAS, the Louisiana Sickle Cell Commission was established within the
Louisiana Department of Health and it is appropriate for the department to study the need
for equitable access to sickle cell treatment.
THEREFORE, BE IT RESOLVED that the Legislature of Louisiana does hereby
urge and request the Louisiana Department of Health to examine and address the regulatory
barriers that impede patient access to novel therapies for sickle cell disease, including
one-time, potentially curative therapies.
BE IT FURTHER RESOLVED that the Legislature of Louisiana does hereby urge
and request the Louisiana Department of Health to work to ensure that sickle cell patients
in the Louisiana Medicaid program have access to potentially curative therapies when those
treatments are proven and federally approved.
BE IT FURTHER RESOLVED that the Legislature of Louisiana does hereby urge
and request the Louisiana Department of Health to collaborate with other state agencies to
take all necessary actions to identify and remove other impediments on patients and their
families, such as logistical and financial challenges, including missing work, child care, and
other issues, that may prevent or otherwise impede all patients including sickle cell patients
from accessing potentially curative therapies.
BE IT FURTHER RESOLVED that a copy of this Resolution be transmitted to the
secretary of the Louisiana Department of Health.
PRESIDENT OF THE SENATE
SPEAKER OF THE HOUSE OF REPRESENTATIVES
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