HLS 24RS-4267 ORIGINAL
2024 Regular Session
HOUSE RESOLUTION NO. 261
BY REPRESENTATIVE PHELPS
HEALTH/SICKLE CELL ANEM: Directs the Louisiana Department of Health to meet
certain benchmarks to launch the Sickle Cell Disease Registry
1 A RESOLUTION
2To direct the Louisiana Department of Health to meet certain benchmarks to launch the
3 Sickle Cell Disease Registry.
4 WHEREAS, sickle cell disease in an inherited blood disorder that affects one in three
5hundred and seventy-five African Americans; and
6 WHEREAS, sickle cell disease affects people across the world of all backgrounds,
7the greatest number of affected patients in the United States are those with African ancestry;
8and
9 WHEREAS, sickle cell anemia was the first genetic disease to be examined at the
10molecular level, and the first article documenting a case of sickle cell anemia was published
11in 1910; and
12 WHEREAS, despite the history of study and interest in sickle cell anemia, it took
13over one hundred years for this state to establish the Sickle Cell Commission; and
14 WHEREAS, sickle cell disease is recognized by national health organizations such
15as the Centers for Disease Control and Prevention, the United States Department of Health
16and Human Services, the Health Resources and Services Administration, and the American
17Society of Hematology as a condition long overdue for the investment of resources to
18improve the health and quality of life of individuals living with sickle cell disease; and
19 WHEREAS, the Legislature of Louisiana has enacted over twenty legislative
20instruments related to healthcare access, quality, supportive services, and data collection for
21sickle cell disease to date; and
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HR NO. 261
1 WHEREAS, in 2022, the Legislature of Louisiana enacted Act No. 647, which
2created the Sickle Cell Disease Registry, the "Skylar-Cooper Database", and tasked the
3Louisiana Department of Health with collecting patient information from healthcare
4providers around the state to connect patients with healthcare advocates and associations to
5assist individuals suffering with sickle cell disease; and
6 WHEREAS, despite efforts by legislators, community leaders, healthcare
7organizations, and policymakers, the number of patients diagnosed with sickle cell disease
8in this state remains unknown; and
9 WHEREAS, in 2024, the Sickle Cell Disease Registry remains unenforced by the
10Louisiana Department of Health and is unable to provide valuable data and information that
11are needed by state and community leaders, healthcare providers, and sickle cell associations
12to provide community assistance and to connect individuals with sickle cell disease to the
13care that they need; and
14 WHEREAS, in 2023, the United States Food and Drug Administration approved a
15powerful treatment for sickle cell disease utilizing Clustered Regularly Interspaced Short
16Palindromic Repeats or "CRISPR" gene therapy; and
17 WHEREAS, Children's Hospital in New Orleans is among one of the first hospitals
18in the nation and the only hospital in this state authorized to provide this life-changing
19treatment.
20 THEREFORE, BE IT RESOLVED that the House of Representatives of the
21Legislature of Louisiana does hereby direct the Louisiana Department of Health to meet
22certain benchmarks to launch the Sickle Cell Disease Registry.
23 BE IT FURTHER RESOLVED that the House of Representatives of the Legislature
24of Louisiana does hereby direct the Louisiana Department of Health to execute a
25memorandum of understanding or data use agreement with healthcare providers and sickle
26cell associations in this state to govern the transfer of patient contact information by July 1,
272024.
28 BE IT FURTHER RESOLVED that the House of Representatives of the Legislature
29of Louisiana does hereby direct the Louisiana Department of Health to submit a report
30describing the memorandum of understanding or data use agreement and listing the
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HR NO. 261
1healthcare providers and sickle cell associations that have agreed to the terms of the
2memorandum of understanding or data use agreement to the House and Senate committees
3on health and welfare and the Louisiana Sickle Cell Commission by July 15, 2024.
4 BE IT FURTHER RESOLVED that the House of Representatives of the Legislature
5of Louisiana does hereby direct the Louisiana Department of Health to begin developing the
6necessary administrative rules to enforce the Sickle Cell Disease Registry by August 1,
72024.
8 BE IT FURTHER RESOLVED that the House of Representatives of the Legislature
9of Louisiana does hereby direct the Louisiana Department of Health to submit a report
10summarizing the content and purpose of the administrative rules to the House and Senate
11committees on health and welfare and the Louisiana Sickle Cell Commission by August 15,
122024.
13 BE IT FURTHER RESOLVED that the House of Representatives of the Legislature
14of Louisiana does hereby direct the Louisiana Department of Health to begin analyzing data
15from existing sources to assess the quality of the data including but not limited to removing
16duplicate entries and assessing the completeness of geographic information by November
171, 2024.
18 BE IT FURTHER RESOLVED that the House of Representatives of the Legislature
19of Louisiana does hereby direct the Louisiana Department of Health to fully launch the
20Sickle Cell Disease Registry by December 24, 2024.
21 BE IT FURTHER RESOLVED that a copy of this resolution be transmitted to the
22secretary of the Louisiana Department of Health and the chairman and vice chairman of the
23Louisiana Sickle Cell Commission.
DIGEST
The digest printed below was prepared by House Legislative Services. It constitutes no part
of the legislative instrument. The keyword, one-liner, abstract, and digest do not constitute
part of the law or proof or indicia of legislative intent. [R.S. 1:13(B) and 24:177(E)]
HR 261 Original 2024 Regular Session Phelps
Directs the La. Dept. of Health (LDH) to meet certain benchmarks toward establishing the
Sickle Cell Disease Registry, including fully launching the registry by Dec. 24, 2024.
Requires LDH to submit a report describing the memorandum of understanding or data use
agreement executed by LDH and healthcare providers to facilitate the transfer of information
Page 3 of 4 HLS 24RS-4267 ORIGINAL
HR NO. 261
about patients with sickle cell disease to the House and Senate committees on health and
welfare and the La. Sickle Cell Commission by July 15, 2024.
Requires LDH to submit a report summarizing the content and purpose of administrative
rules to House and Senate committees on health and welfare and the La. Sickle Cell
Commission by Aug. 15, 2024.
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