ENROLLED
2024 Regular Session
HOUSE RESOLUTION NO. 275
BY REPRESENTATIVE MILLER
A RESOLUTION
To urge and request the Louisiana Department of Health to conduct a comprehensive review
of all Louisiana legislation pertaining to sickle cell disease to evaluate if the
legislation aligns with current conditions and meets the demands of service delivery
and systems of care in this state.
WHEREAS, sickle cell disease is recognized by national health organizations such
as the Centers for Disease Control and Prevention, the United States Department of Health
and Human Services, the Health Resources and Services Administration, and the American
Society of Hematology as a condition long overdue for an investment of resources to
improve the health and quality of life of individuals living with sickle cell disease; and
WHEREAS, the Centers for Medicare and Medicaid Services announced actions to
increase access to sickle cell disease treatments with a focus on the Cell and Gene Therapy
Access Model; and
WHEREAS, the American Society of Hematology developed clinical practice
guidelines for sickle cell disease that are reviewed annually and outline risks, complications,
and evidence-based best practices for treating individuals impacted by sickle cell disease;
and
WHEREAS, since the 1970s, legislators and advocates in Louisiana have recognized
barriers to accessible and high-quality health care for individuals living with sickle cell
disease in this state and, in response, established statewide sickle cell clinics and local
programs; and
WHEREAS, in more recent decades, legislators and advocates established the
Louisiana Sickle Cell Commission and a statewide sickle cell disease registry known as the
"Skylar-Cooper Database"; and
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WHEREAS, the barriers to accessing care affecting individuals with sickle cell
disease and recommendations for treatment have evolved since the introduction of
legislation; and
WHEREAS, a review of legislation regarding sickle cell disease is essential to ensure
that current policies adequately meet the needs of individuals with sickle cell disease; and
WHEREAS, the implementation of the legislation addressing service delivery and
the well-being of individuals living with sickle cell disease indicated that the progression of
treatment and comprehensive care come with a high unmet clinical need, underfunded
programs, and lack of insurance coverage for medical treatment resulting in financial burden
for many living with sickle cell disease; and
WHEREAS, adequately trained healthcare clinicians and specialized healthcare
services are limited; and
WHEREAS, people living with sickle cell disease are frequently stigmatized,
resulting in socioeconomic effects on education, employment, and psychosocial
development; and
WHEREAS, co-management of services and partnerships are necessary for the
coordination of care including but not limited to education, clinical specialties, and social
support; and
WHEREAS, the Legislature of Louisiana has implemented over twenty legislative
instruments related to healthcare access, quality, and supportive services for sickle cell
disease to date.
THEREFORE, BE IT RESOLVED that the House of Representatives of the
Legislature of Louisiana does hereby urge and request the Louisiana Department of Health
to conduct a comprehensive review of all Louisiana legislation pertaining to sickle cell
disease to evaluate if the legislation aligns with current conditions and meets the demands
of service delivery and systems of care in this state.
BE IT FURTHER RESOLVED that the Louisiana Department of Health shall make
recommendations to the governor and legislature to strengthen statutes related to health care
access, quality, and supportive services in order to address current demands, align with
national standards for best practices, and ensure a high-quality care for individuals living
with sickle cell disease.
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BE IT FURTHER RESOLVED that in conducting the review requested in this
Resolution, the Louisiana Department of Health shall collaborate with the Louisiana Sickle
Cell Commission, individuals living with sickle cell disease, other state agencies, as well as
non-governmental entities and professionals who work with individuals living with sickle
cell disease.
BE IT FURTHER RESOLVED that the Louisiana Department of Health shall submit
a written report of recommendations no later than February 14, 2025, to the governor, the
members of the Louisiana Sickle Cell Commission, and the House and Senate committees
on health and welfare summarizing the findings and recommendations of the comprehensive
review requested in this Resolution.
BE IT FURTHER RESOLVED that a copy of this Resolution be transmitted to the
secretary of the Louisiana Department of Health and the chairman of the Louisiana Sickle
Cell Commission.
SPEAKER OF THE HOUSE OF REPRESENTATIVES
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