SLS 21RS-1715 ORIGINAL
2021 Regular Session
SENATE CONCURRENT RESOL UTION NO. 66
BY SENATOR BARROW
HEALTH DEPARTMENT. Requests the Department of Health to provide for equitable
access to transformative therapies for sickle cell disease.
1 A CONCURRENT RESOL UTION
2 To urge and request the Louisiana Department of Health to address regulatory barriers that
3 impede patient access to novel therapies for sickle cell disease, and to work to ensure
4 that sickle cell patients in the Louisiana Medicaid program have access to potentially
5 curative therapies.
6 WHEREAS, sickle cell anemia and sickle cell disease, used interchangeably, refer
7 to a group of inherited disorders that affect the red blood cells; and
8 WHEREAS, the National Institutes of Health is working on innovative genetic
9 therapies that could someday cure sickle cell disease; and
10 WHEREAS, the Food and Drug Administration has granted orphan drug designation
11 to sickle cell therapies to provide incentives and encouragement for development, and at the
12 end of 2019, granted accelerated approval for a new treatment for sickle cell disease; and
13 WHEREAS, sickle cell disease can be a life-threatening condition and access to
14 comprehensive health care may be limited by social, economic, cultural, and geographic
15 barriers; and
16 WHEREAS, nationwide, more than seventy percent of patients with sickle cell
17 disease are insured under state Medicaid programs; and
18 WHEREAS, historically and continuing today, the sickle cell disease patient
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SLS 21RS-1715 ORIGINAL
1 community has been medically underserved, a fact which President Richard Nixon
2 recognized in 1972 when he signed the Sickle Cell Anemia Control Act into law; and
3 WHEREAS, while there is no widely available cure for sickle cell disease, one-time
4 gene therapies, including gene editing therapeutic approaches, are being developed which
5 may offer potential cures for some patients; and
6 WHEREAS, the Louisiana Sickle Cell Commission was established within the
7 Louisiana Department of Health and it is appropriate for the department to study the need
8 for equitable access to sickle cell treatment.
9 THEREFORE, BE IT RESOLVED that the Legislature of Louisiana does hereby
10 urge and request the Louisiana Department of Health to examine and address the regulatory
11 barriers that impede patient access to novel therapies for sickle cell disease, including
12 one-time, potentially curative therapies.
13 BE IT FURTHER RESOLVED that the Legislature of Louisiana does hereby urge
14 and request the Louisiana Department of Health to work to ensure that sickle cell patients
15 in the Louisiana Medicaid program have access to potentially curative therapies when those
16 treatments are proven and federally approved.
17 BE IT FURTHER RESOLVED that the Legislature of Louisiana does hereby urge
18 and request the Louisiana Department of Health to collaborate with other state agencies to
19 take all necessary actions to identify and remove other impediments on patients and their
20 families, such as logistical and financial challenges, including missing work, child care, and
21 other issues, that may prevent or otherwise impede all patients including sickle cell patients
22 from accessing potentially curative therapies.
23 BE IT FURTHER RESOLVED that a copy of this Resolution be transmitted to the
24 secretary of the Louisiana Department of Health.
The original instrument and the following digest, which constitutes no part
of the legislative instrument, were prepared by Brandi Cannon.
DIGEST
SCR 66 Original 2021 Regular Session Barrow
Requests the Louisiana Department of Health to address regulatory barriers that impede
patient access to novel therapies for sickle cell disease.
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