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ASH President Comments on Sickle Cell Disease Report from the National Academies of Sciences, Engineering, and Medicine

Commission of report by U.S. Department of Health and Human Services an Important Step Toward Improving State of SCD Care in the United States

(WASHINGTON, Sep. 10, 2020) — Today the National Academies of Sciences, Engineering, and Medicine (NASEM) released a report called “Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action.”

The report, which was commissioned by the U.S. Department of Health and Human Services (HHS), was developed by a committee that examined the prevalence, health outcomes, genetic implications, and societal factors associated with sickle cell disease (SCD) and sickle cell trait (in which individuals have inherited one copy of the SCD gene instead of the two that cause SCD). The committee also examined current clinical practice guidelines, best practices, and programs for care of individuals living with SCD to offer a detailed assessment of the present state of care. The report serves as a blueprint for acknowledging and addressing existing barriers and gaps in care for individuals living with SCD and offers priorities and recommendations about the programs, policies, and research efforts that are needed to ensure that individuals living with SCD are able to access comprehensive, specialized care and treatment.

In response to the release of the report, ASH President and ASH Research Collaborative President Stephanie Lee, MD, MPH, of Fred Hutchinson Cancer Research Center issued the following statement:

“Individuals living with SCD not only are burdened with the pain and disability from a chronic disease, but they also have few treatment options and most lack access to appropriate care due to a fragmented health care system and insufficient SCD knowledge and experience in the clinician workforce. The status quo is unacceptable, which is why five years ago ASH launched a multifaceted, transformative, and patient-centric initiative to change the way SCD is treated through supporting advances in research, improving provider training and education, advocating for policies to expand access to care and improve data collection, conducting global health outreach, and establishing the ASH Research Collaborative Sickle Cell Disease Clinical Trials Network. Conquering SCD is a clear priority for ASH and the ASH Research Collaborative, and this NASEM strategic plan and blueprint for addressing SCD in the United States is an important milestone toward improvement. ASH applauds HHS and HHS’s Office of Minority Health for the foresight to commission this report to help set a path forward toward better care for the approximately 100,000 Americans with the disease and their loved ones.

ASH is pleased that the report prioritizes the need to further identify and address barriers to access to quality care, especially for adults with SCD, who often face challenges accessing appropriate and coordinated care when they have to switch from pediatric to adult providers. In the United States, barriers to receiving quality, comprehensive, outpatient preventive and primary care for SCD result in health care disparities and inequities. Addressing these barriers by guiding and informing the establishment of adult sickle cell centers remains an important priority for ASH.

We also applaud the committee for prioritizing the need for expanded data collection. A strong national data collection program can help us better understand gaps in care by providing information about where individuals with SCD live, how they receive care, and whether they have access to health care providers with expertise in SCD. An expansion of the Centers for Disease Control and Prevention (CDC) SCD Data Collection program could improve our understanding of the disease and in turn, improve health care outcomes for individuals with SCD.

We thank NASEM for taking a comprehensive approach to this study, which was necessary given the many challenges facing individuals with SCD in the United States. ASH appreciates that NASEM engaged multiple stakeholders, including many ASH members working in SCD, to craft a blueprint for finally improving the health of this population. Now we must work together to enact these recommendations.

ASH looks forward to continuing to work with HHS, NASEM, and other SCD partners to address the priority issues outlined in the report.”


In 2015, ASH launched a multifaceted initiative to address the burden of disease both in the United States and globally. ASH has since developed clinical guidelines for SCD management and care, expanded education and training efforts, and advocated with policymakers to enhance and expand federal SCD programs that include efforts to address pain management in individuals with SCD (learn more about ASH’s advocacy efforts here). Currently, ASH is working with members of Congress to create a pilot program for better access to health care for people living with SCD. In 2016, the Society also founded the Sickle Cell Disease Coalition which has grown to more than 85 members. In addition to these efforts, the ASH Research Collaborative (ASH RC) Data Hub and SCD Clinical Trials Network was developed with the mission to improve outcomes for individuals with SCD by expediting SCD therapy development and facilitating innovation in clinical trial research. It provides the infrastructure for identifying patient cohorts for trials, matching trial sponsors with sites, facilitating recruitment of eligible patients, and ensuring optimally designed trials and an efficient, coordinated approach. Through patient engagement and optimized clinical trial execution, the Clinical Trials Network will help to bring new and more effective therapies to individuals with SCD.

The American Society of Hematology (ASH) (www.hematology.org) is the world’s largest professional society of hematologists dedicated to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. For more than 60 years, the Society has led the development of hematology as a discipline by promoting research, patient care, education, training, and advocacy in hematology. ASH publishes Blood (www.bloodjournal.org), the most cited peer-reviewed publication in the field, and Blood Advances (www.bloodadvances.org), an online, peer-reviewed open-access journal.

Leah Enser, American Society of Hematology
[email protected]; 202-552-4927