Expand Sickle Cell Disease Programs & Svcs.

GENERAL ASSEMBLY OF NORTH CAROLINA
SESSION 2025
S 1
SENATE BILL 283

Short Title: Expand Sickle Cell Disease Programs & Svcs. (Public)
Sponsors: Senators Robinson and Lowe (Primary Sponsors).
Referred to: Rules and Operations of the Senate
March 17, 2025
*S283-v-1*
A BILL TO BE ENTITLED 1
AN ACT APPROPRIATING FUNDS TO THE DEPARTMENT OF HEALTH AND HUMAN 2
SERVICES, DIVISION O F PUBLIC HEALTH, TO EXPAND PROGRAMS AND 3
SERVICES FOR NORTH CAROLINIANS WITH SICKLE CELL DISEASE. 4
Whereas, recent findings from the North Carolina Sickle Cell Data Collection 5
Program funded by the Centers for Disease Control and Prevention (CDC) estimate that the 6
number of individuals living with sickle cell disease in our State has risen to at least 7,000; and 7
Whereas, this represents a twenty -five percent (25%) increase from the previously 8
estimated 5,578 persons living with sickle cell disease in our State from 2004-2008, based on the 9
North Carolina Registry and Surveillance System for Hemoglobinopathies funded by the CDC; 10
and 11
Whereas, the Department of Health and Human Services, Division of Public Health, 12
requires additional State funds to ensure that essential services are available statewide to support 13
the growing number of North Carolinians affected by sickle cell disease; Now, therefore, 14
The General Assembly of North Carolina enacts: 15
SECTION 1. There is appropriated from the General Fund to the Department of 16
Health and Human Services, Division of Public Health, the sum of one million six hundred 17
seventy-eight thousand four hundred dollars ($1,678,400) in recurring funds and six hundred 18
twenty-nine thousand eight hundred seventy -three dollars ($629,873) in nonrecurring funds for 19
the 2025-2026 fiscal year; and the sum of one million six hundred seventy -eight thousand four 20
hundred dollars ($1,678,400) in recurring funds and six hundred thirteen thousand two hundred 21
fifty dollars ($613,250) in nonrecurring funds for the 2026 -2027 fiscal year to be allocated and 22
used as follows: 23
(1) Funds for comprehensive sickle cell medical centers. – The sum of one million 24
three hundred sixteen thousand three hundred sixty-four dollars ($1,316,364) 25
in recurring funds for each year of the 2025 -2027 fiscal biennium to be 26
distributed in the following amounts to the following comprehensive sickle 27
cell medical cente rs each fiscal year to support the multifaceted needs of 28
individuals with sickle cell disease, including social and behavioral health 29
services and assistance for young adults transitioning from pediatric to adult 30
care: 31
a. Atrium Health. – The sum of two hu ndred three thousand seven 32
hundred thirteen dollars ($203,713). 33
b. Duke University Medical Center. – The sum of two hundred forty-four 34
thousand nine hundred ninety-nine dollars ($244,999). 35
General Assembly Of North Carolina Session 2025
Page 2 Senate Bill 283-First Edition
c. East Carolina University School of Medicine. – The sum of two 1
hundred thirty -five thousand five hundred thirty -six dollars 2
($235,536). 3
d. Mission Hospitals. – The sum of one hundred thirty -seven thousand 4
six hundred one dollars ($137,601). 5
e. The University of North Carolina at Chapel Hill School of Medicine. 6
– The sum of two hundred eighty -one thousand thirty -one dollars 7
($281,031). 8
f. Wake Forest University Baptist Medical Center. – The sum of two 9
hundred thirteen thousand four hundred eighty -four dollars 10
($213,484). 11
(2) Funds for one Transition Coordinator position a t each comprehensive sickle 12
cell medical center. – Of the funds allocated in subdivision (1) of this section, 13
the sum of seventy-five thousand dollars ($75,000) in recurring funds for each 14
year of the 2025 -2027 fiscal biennium shall be used by each compreh ensive 15
sickle cell medical center to create one full -time, permanent Transition 16
Coordinator position at each medical center to conduct transition readiness 17
assessments and other coordination activities to ensure a seamless referral 18
process for individuals with sickle cell disease who are transitioning from 19
pediatric to adult care. 20
(3) Funds to provide directed grants to community -based organizations. – The 21
sum of three hundred fifty -three thousand two hundred fifty dollars 22
($353,250) in nonrecurring funds f or each year of the 2025 -2027 fiscal 23
biennium to award grants to one or more nonprofit corporations to provide 24
services to individuals with sickle cell disease. In selecting grantees, the 25
Department of Health and Human Services, Division of Public Health, shall 26
prioritize community -based, nonprofit organizations that provide a 27
comprehensive array of services to individuals with sickle cell disease, their 28
families, and the surrounding community in counties that are lacking these 29
services. Each grantee shall use a portion of their grant award to facilitate the 30
transition of individuals with sickle cell disease from pediatric to adult care at 31
the local level. 32
(4) Funds to support North Carolina Sickle Cell Syndrome Program operations. – 33
The following amounts to the Women, Infant and Community Wellness 34
Section of the Division of Public Health within the Department of Health and 35
Human Services to support the operations of the North Carolina Sickle Cell 36
Syndrome Program authorized by G.S. 130A-129: 37
a. The sum of th ree hundred sixty -two thousand thirty -six dollars 38
($362,036) in recurring funds for each year of the 2025 -2027 fiscal 39
biennium to create additional full-time, permanent positions to support 40
the work of the North Carolina Sickle Cell Syndrome Program. 41
b. The sum of sixteen thousand six hundred twenty -three dollars 42
($16,623) in nonrecurring funds for the 2025 -2026 fiscal year to 43
purchase office equipment and furniture to support any positions 44
created under sub-subdivision (4)a. of this section. 45
c. The sum of two hundred sixty thousand dollars ($260,000) in 46
nonrecurring funds for each year of the 2025-2027 fiscal biennium to 47
disseminate an evidence-based sickle cell disease toolkit to emergency 48
department providers throughout the State and to facilitate their 49
implementation of the toolkit in order to improve emergency 50
department care for patients with sickle cell disease. 51
General Assembly Of North Carolina Session 2025
Senate Bill 283-First Edition Page 3
SECTION 2. This act becomes effective July 1, 2025. 1