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Urging federal policymakers to ensure that individuals with Sickle Cell Disease have access to all medications and forms of treatment for Sickle Cell Disease, no matter their form of health care insurance.
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WHEREAS, Sickle Cell Disease (SCD) is a severe, life-shortening inherited disease that affects the red blood cells and impacts predominantly 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 do not last as long as normal round red blood cells, leading to anemia. The sickle cells also get stuck in blood vessels and block blood flow, resulting in vaso-occlusive crises, which can cause pain and organ damage; and
WHEREAS, Individuals living with Sickle Cell Disease experience severe pain, anemia, organ failure, stroke, and infection; and in one recent study, more than 30% of those diagnosed experienced premature death, and another recent study estimates that the life expectancy for individuals with sickle cell disease is 54 years; and
WHEREAS, According to the Pennsylvania Department of Health, an estimated 3,870 Pennsylvanians were reported to be living with Sickle Cell Disease. However, the exact number of people with sickle cell disease is unknown. There is a need for comprehensive and coordinated data collection efforts to further understand and quantify the scope and impact of Sickle Cell Disease on patients, communities, states, and the nation; and
WHEREAS, Penn Medicine Comprehensive Sickle Cell Program provides world-renowned care for Sickle Cell adults and offers a multidisciplinary approach to care; and
WHEREAS, In the more than 100 years since the underlying cause of Sickle Cell Disease was discovered, the sickle cell patient community has received relatively little attention and few resources, and these individuals have suffered due to racial discrimination in the health care system in ...
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