BILL NUMBER: S6029
SPONSOR: PARKER
 
TITLE OF BILL:
An act to amend the public health law, in relation to requiring the
health equity council to issue mandates related to the treatment of
sickle cell disease
 
PURPOSE OR GENERAL IDEA OF BILL:
This bill requires the health equity council to issue mandates to the
commissioner of the health department for the establishment of regional
sickle cell centers; the implementation of workfOrce development in
primary and specialty care with a focus on sickle cell disease; and the
support of long-term surveillance of sickle cell disease complications,
mortality, health services utilization, and cost throughout the lifespan
of sickle cell disease patients.
 
SUMMARY OF SPECIFIC PROVISIONS:
Section 1 amends paragraph c of subdivision 6 of section 24 of the
public health law.
Section 2 amends subdivision 1 of section 206 of the public health law.
Section 3 sets forth the effective date.
 
JUSTIFICATION:
The establishment of regional sickle cell disease (SCD) centers is a
critical step towards addressing the complex needs of individuals with
sickle cell disease. These centers will serve as hubs for team-based
integrated care, providing comprehensive services that are essential for
improving patient outcomes and quality of life. Sickle cell disease
patients require multifaceted care that addresses not only their phys-
ical symptoms but also their mental health needs. Integrated care
centers can provide pain management, mental health services, trait test-
ing, and genetic counseling, ensuring a holistic approach to patient
care.
Sickle cell disease predominantly affects minority groups, who histor-
ically have had less access to comprehensive care. Establishing regional
centers is a step towards rectifying health disparities and promoting
equity in healthcare access and outcomes. By centralizing resources and
expertise, regional sickle cell centers can reduce the overall cost
burden on the healthcare system through more efficient management of
sickle cell disease.
There is a pressing need for specialized training in SCD care within
both primary and specialty care settings. By implementing workforce
development programs, healthcare professionals can be better equipped to
meet the unique challenges of treating SOD. The chronic nature of SCD
necessitates ongoing monitoring to track disease complications, mortal-
ity rates, health services utilization, and associated costs. Long-term
surveillance will help identify at-risk populations and emerging trends,
enabling proactive and targeted interventions.
 
PRIOR LEGISLATIVE HISTORY:
2024: S8924-REFERRED TO HEALTH
 
FISCAL IMPLICATIONS:
 
EFFECTIVE DATE:
This act shall take effect immediately.

Statutes affected:
S6029: 243 public health law, 243(6) public health law, 206 public health law, 206(1) public health law