BILL NUMBER: S6178
SPONSOR: PARKER
 
TITLE OF BILL:
An act in relation to directing the commissioner of health to conduct a
sickle cell disparity study; and providing for the repeal of such
provisions upon expiration thereof
 
PURPOSE OR GENERAL IDEA OF BILL:
This legislation authorizes and directs the commissioner of health to
conduct a sickle cell disparity study to determine whether there is a
disparity between treatment accessibility and affordability for persons
with sickle cell disease and persons with other chronic illnesses.
 
SUMMARY OF SPECIFIC PROVISIONS:
Section one authorizes and directs the commissioner of health to conduct
a sickle cell disparity study.
Section two provides the effective date and repealer.
 
JUSTIFICATION:
Sickle cell disease (SCD) is a genetic disorder with s gndficant public
health implications. Many people, including healthcare professionals,
may lack awareness about SCD, leading to delayed diagnosis and inade-
quate and inequitable care. The chronic pain episodes (crises) that
sickle cell patients often experience are often inadequately addressed
or stigmatized, leading to undertreatment. Sickle cell disease histor-
ically receives less research funding compared to other genetic disor-
ders, and possibly other chronic illnesses, limiting the development of
new treatments and therapies.
A statewide sickle cell disparity study can identify and address poten-
tial disparities in healthcare access, ensuring that individuals with
SCD receive equitable treatment compared to those with other chronic
illnesses. This promotes health equity and fairness in healthcare
provision. Sickle cell disease has unique medical requirements, includ-
ing pain management, regular monitoring, and specialized care. Under-
standing if there are disparities can lead to tailored interventions to
meet the specific needs of this patient population.
This study may reveal if individuals with SCD are being underdiagnosed
or undertreated compared to those with other chronic illnesses, shedding
light on gaps in the healthcare system. Sickle cell disease often
requires ongoing medical care and can impose a significant financial
burden on individuals and their families. Assessing affordability can
highlight economic challenges and inform policies to alleviate financial
strain. Disparities in accessibility and affordability may contribute to
variations in health outcomes.
Understanding these disparities can lead to interventions aimed at
improving health outcomes for individuals with SCD. The findings of the
study can inform the development of legislation and policies that
address disparities and ensure that individuals with SOD have equal
access to affordable and effective healthcare.
The study can serve as a basis for community engagement and advocacy
efforts. It empowers affected communities to raise awareness about the
unique challenges they face and advocate for necessary changes in
healthcare policies and practices. Understanding treatment accessibility
and affordability disparities can drive research initiatives and inno-
vations to improve care delivery models, reduce costs, and enhance over-
all healthcare quality for individuals with SCD.
It is ethically imperative to ensure that all individuals, regardless of
their health condition, have equal access to healthcare. Conducting a
disparity study aligns with the principles of justice and fairness in
healthcare provision. This study promotes health equity, addresses
unique healthcare needs, identifies potential gaps in diagnosis and
treatment, alleviates financial burdens, improves health outcomes,
informs legal and policy decisions, engages communities, drives research
and innovation, and upholds ethical principles in healthcare.
 
PRIOR LEGISLATIVE HISTORY:
2024: S8921 REFERRED TO HEALTH
 
FISCAL IMPLICATIONS:
 
EFFECTIVE DATE:
This act shall take effect immediately and shall expire and be deemed
repealed two years after such effective date.