HR 302 — 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.

PRINTER'S NO.    2261

                  THE GENERAL ASSEMBLY OF PENNSYLVANIA



           HOUSE RESOLUTION
              No. 302
                                              Session of
                                                2025

     INTRODUCED BY SCOTT, GIRAL, HARKINS, McNEILL, WAXMAN, HILL-
        EVANS, SANCHEZ, CEPEDA-FREYTIZ, MAYES, HOHENSTEIN, COOPER AND
        D. WILLIAMS, SEPTEMBER 3, 2025

     REFERRED TO COMMITTEE ON HEALTH, SEPTEMBER 4, 2025


                               A RESOLUTION
 1   Ensuring greater access to sickle cell disease treatments and
 2      designating the Department of Health to conduct a
 3      comprehensive and coordinated data collection effort to
 4      better understand and quantify the scope and impact of sickle
 5      cell disease on patients, communities and states throughout
 6      the United States.
 7      WHEREAS, Sickle cell disease is a severe, life-shortening and
 8   inherited blood disorder that predominantly impacts people of
 9   color, particularly African Americans; and
10      WHEREAS, Sickle cell disease is a disease in which a person's
11   body produces abnormally shaped red blood cells that resemble a
12   crescent or sickle; and
13      WHEREAS, Sickle cell disease typically first appears in
14   children around six months of age; and
15      WHEREAS, Symptoms of sickle cell disease may include anemia,
16   pain, swelling of hands and feet, frequent infections, delayed
17   growth or puberty and vision problems; and
18      WHEREAS, According to the Department of Health, an estimated
19   3,870 Pennsylvanians were reported living with sickle cell
 1   disease in 2019-2020; and
 2      WHEREAS, The exact number of people with sickle cell disease
 3   nationwide is still unknown, though the Centers for Disease
 4   Control and Prevention estimates that sickle cell disease
 5   affects more than 100,000 Americans; and
 6      WHEREAS, Sickle cell disease occurs in approximately 1 out of
 7   every 365 Black or African-American births nationwide; and
 8      WHEREAS, Individuals living with sickle cell disease
 9   encounter barriers to obtaining quality care, such as limited
10   geographic access, financial and socioeconomic barriers,
11   specialist availability, transportation needs, translation
12   services and social factors, such as stigma, bias and lack of
13   public awareness; and
14      WHEREAS, Due to new treatments, individuals with sickle cell
15   disease now have a longer life expectancy, improved quality of
16   life and survival rates past 50 years of age; and
17      WHEREAS, However, there is a need for more comprehensive and
18   coordinated data collection efforts to better understand and
19   quantify the scope and impact of sickle cell disease; and
20      WHEREAS, Further, there is a need for states to provide open
21   access to therapies that treat sickle cell disease, particularly
22   innovative therapies that have been approved in recent years to
23   treat the underlying cause of the disease; and
24      WHEREAS, Scientific and medical research advances need to be
25   coupled with health care delivery and payment policies to ensure
26   universal access to innovative products, particularly for
27   Medicaid beneficiaries; and
28      WHEREAS, Efforts should focus on the identification and the
29   promotion of affordable interventions, including community
30   education, training of health professionals and newborn

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 1   screening for early diagnosis of sickle cell disease; and
 2      WHEREAS, Involving other potential stakeholders, such as
 3   organizations and other national and international health-
 4   related agencies, would significantly contribute to efforts
 5   relating to advocacy, technology transfer and capacity building;
 6   therefore be it
 7      RESOLVED, That the House of Representatives ensure greater
 8   access to sickle cell disease treatments and designate the
 9   Department of Health to conduct a comprehensive and coordinated
10   data collection effort to better understand and quantify the
11   scope and impact of sickle cell disease on patients, communities
12   and states throughout the United States; and be it further
13      RESOLVED, That the House of Representatives and members of
14   the Legislative Black Caucus urge Federal policymakers to ensure
15   that individuals with sickle cell disease have access to all
16   medications and forms of treatment for the disease, including
17   services for enrollees who are diagnosed with the disease and
18   who are eligible for covered services under Medicare and
19   Medicaid programs, and to ensure that new and effective
20   treatments are developed for sickle cell disease.




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