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House of Representatives
Session of 2021 - 2022 Regular Session


Posted: September 19, 2022 11:54 AM
From: Representative Stephen Kinsey and Rep. Donna Bullock
To: All House members
Subject: Promoting Greater Access and Research for Sickle Cell Disease
Sickle cell disease is an inherited blood disorder that predominately affects people of color. The  disease produces abnormal red blood cell shapes (i.e., crescent or “sickle”) that cause red blood cells to become hard, sticky, and die at an earlier rate than normal red blood cells. This can lead to serious complications among individuals, such as anemia, infections, strokes, and more.
Therapeutic interventions for sickle cell have greatly improved in recent years, as has the life-spans of those with sickle cell. While these new therapies provide patients and their physicians with more options to manage and treat their condition, many of these therapies may not be available to low-income individuals due to their costs. Additional barriers to obtaining quality care also include limited geographic access, lack of public awareness, and social factors such as stigma and bias.
As of 2020, over 3,800 Pennsylvanians were reported living with sickle cell disease, yet this community does not receive the attention and resources they deserve. To bring greater awareness to sickle cell in Pennsylvania, we are introducing a resolution to call on federal policymakers to ensure that individuals have access to all medications and forms of treatment, as well as ensure that any new therapies are covered by Medicare and Medicaid programs. Additionally, our resolution would designate the state Department of Health to conduct a comprehensive and coordinated data collection effort to better understand and quantify the score and impact of sickle cell disease on patients, communities, states, and across the nation.
Please join us in co-sponsoring this resolution to bring critical awareness to sickle cell disease in Pennsylvania.

Introduced as HR230