PRINTER'S NO. 1933
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
186
Session of
2023
INTRODUCED BY KINSEY AND BULLOCK, AUGUST 29, 2023
REFERRED TO COMMITTEE ON HEALTH, AUGUST 29, 2023
A RESOLUTION
Ensuring greater access to sickle cell disease treatments and
designating the Department of Health to conduct a
comprehensive and coordinated data collection effort to
better understand and quantify the scope and impact of sickle
cell disease on patients, communities and states throughout
the United States.
WHEREAS, Sickle cell disease is a severe, life-shortening and
inherited blood disorder that predominantly impacts people of
color, particularly African Americans; and
WHEREAS, Sickle cell disease is a disease in which a person's
body produces abnormally shaped red blood cells that resemble a
crescent or sickle; and
WHEREAS, Sickle cell disease typically first appears in
children around six months of age; and
WHEREAS, Symptoms of sickle cell disease may include anemia,
pain, swelling of hands and feet, frequent infections, delayed
growth or puberty and vision problems; and
WHEREAS, According to the Department of Health, an estimated
3,870 Pennsylvanians were reported living with sickle cell
disease in 2019-2020; and
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WHEREAS, The exact number of people with sickle cell disease
nationwide is still unknown, though the Centers for Disease
Control and Prevention estimates that sickle cell disease
affects more than 100,000 Americans; and
WHEREAS, Sickle cell disease occurs in approximately 1 out of
every 365 Black or African-American births nationwide; and
WHEREAS, Individuals living with sickle cell disease
encounter barriers to obtaining quality care, such as limited
geographic access, financial and socioeconomic barriers,
specialist availability, transportation needs, translation
services and social factors, such as stigma, bias and lack of
public awareness; and
WHEREAS, Due to new treatments, individuals with sickle cell
disease now have a longer life expectancy, improved quality of
life and survival rates past 50 years of age; and
WHEREAS, However, there is a need for more comprehensive and
coordinated data collection efforts to better understand and
quantify the scope and impact of sickle cell disease; and
WHEREAS, Further, there is a need for states to provide open
access to therapies that treat sickle cell disease, particularly
innovative therapies that have been approved in recent years to
treat the underlying cause of the disease; and
WHEREAS, Scientific and medical research advances need to be
coupled with health care delivery and payment policies to ensure
universal access to innovative products, particularly for
Medicaid beneficiaries; and
WHEREAS, Efforts should focus on the identification and the
promotion of affordable interventions, including community
education, training of health professionals and newborn
screening for early diagnosis of sickle cell disease; and
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WHEREAS, Involving other potential stakeholders, such as
organizations and other national and international health-
related agencies, would significantly contribute to efforts
relating to advocacy, technology transfer and capacity building;
therefore be it
RESOLVED, That the House of Representatives ensure greater
access to sickle cell disease treatments and designate the
Department of Health to conduct a comprehensive and coordinated
data collection effort to better understand and quantify the
scope and impact of sickle cell disease on patients, communities
and states throughout the United States; and be it further
RESOLVED, That the House of Representatives and members of
the Legislative Black Caucus urge Federal policymakers to ensure
that individuals with sickle cell disease have access to all
medications and forms of treatment for the disease, including
services for enrollees who are diagnosed with the disease and
who are eligible for covered services under Medicare and
Medicaid programs, and to ensure that new and effective
treatments are developed for sickle cell disease.
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