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Expanding Treatment for Sickle Cell Disease

WHEREAS, The NAACP is committed to ending racial health disparities by creating an inclusive ecosystem of healthy people and communities that includes focusing in on chronic diseases that disproportionately affect the Black community; and

WHEREAS, Sickle cell disease (SCD) is a genetic red blood cell disorder that is inherited and disproportionately affects the Black community. People of African descent make up 90% of the population with sickle cell disease in the U.S. The Centers for Disease Control and Prevention (CDC) indicates that there are 100,000 Americans who are stricken with SCD, including one out of every 365 African Americans. Furthermore, the sickle cell trait is in the DNA of one of 13 African American babies born in the United States; and

WHEREAS, the Sickle Cell Data collection system compiles data regarding Americans with sickle cell disease to examine "long-term trends in diagnosis, treatment, healthcare access and to determine patient needs as well as the barriers blocking treatment. The end result is the enactment of actions which increase appropriate utilization of services resulting in lower mortality and morbidity rates; and

WHEREAS, patients with SCD experience severe pain and they often have no option other than to seek treatment in an Emergency Room. During a survey-based needs assessment at several SCDIC centers. The assessment surveyed 516 adolescents and adults with SCD and 243 ED providers from several regions of the US regarding how Emergency Departments treated SCD patients. Toplines reveal 46% and 35% reported feeling emergency physicians and nurses, respectively, did not care about them. So, in 2014, the National Heart, Lung, and Blood Institute published SCD treatment guidelines; and

WHEREAS, the Covid-19 pandemic has affected the treatment and funding supports for SCD including the shortage of Black blood donations which has negatively impacted one of the more effective therapies. This coupled with the reality that people with SCD are at greater risk of severe illness and death from respiratory (lung) infections, including COVID-19, than people without SCD has made the urgency of now more apparent.

THEREFORE, BE IT RESOLVED, that the NAACP will advocate for the following:

  • The full adoption of the recommendations in the 2022 Congressional Resolution that the designated June 19 as "World Sickle Cell Awareness Day." The recommendations calls on the White House, Congress, the Department of Health and Human Services (HHS), Department of Veterans Affairs, National Institutes of Health (NIH), Food and Drug Administration (FDA), and Centers for Medicare & Medicaid Services (CMS) to: (A) Align resources with state policymakers and sickle cell stakeholders to ensure patients on Medicaid/MediCal have access to all available treatments for SCD; (B) Declare at the national, state and local level that SCD is a public health crisis; and (C) Adopt meaningful policies that fully fund the research and innovation therapies focused on the eradication of SCD.

  • Expanded funding from the Center of Disease Control and Prevention (CDC) for SCD including data collection, research, training for all medical professionals, especially Emergency Departments, in all states and other needed services.

  • The creation of stronger standardized treatment guidelines by the CDC to treat the disease beyond pain management that focuses on the whole person and considers a holistic approach to health outcomes.

  • Increased funding through the Centers for Medicare & Medicaid Services (CMS) for state- based Medicaid and Medicare programs that improves accessibility to treatments, invest in research, promote the development of innovative new therapies, and provide engagement spaces with the broader community on best practices to improve sickle cell disease care.

BE IT FINALLY RESOLVED, that the National Association for the Advancement of Colored People reaffirm the 2017 Sickle Cell Resolution and declare SCD a public health crisis and provide guidance to all units on how to advocate and effectuate change properly.

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