Addressing Sickle Cell Disease A Strategic Plan and Blueprint for Action (2020) / Chapter Skim
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A contributing factor to this lack of awareness and resources is that the affected population, which is primarily composed of racial and ethnic minorities, contends with persistent discrimination in the health care system and racism in society at large. As described by Keith Wailoo, a medical historian who has extensively studied the history of SCD, "Sickle cell disease is a microcosm of how issues of race, ethnicity, and identity come into conflict with issues of health care." Thus, individuals with SCD have suffered from a lag in the development of treatments and cures as well as an often strained relationship with health care providers and limited resources for advocacy efforts.
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This report is the answer to that request. BOX S-1 Committee's Statement of Task An ad hoc committee will be convened to develop a strategic plan and blueprint for addressing sickle cell disease (SCD)
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High childhood mortality rates for SCD led to an increased emphasis on improving the infrastructure for pediatric care in the United States and conducting research to prevent early death from infections. The emphasis on early interventions for SCD led to seminal studies that provided the evidence base for clinical guidelines for the prevention
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There is a lack of awareness among providers, especially those who do not regularly encounter patients with SCD, of the available clinical practice guidelines for evidence-based SCD care, which leads to inconsistent or substandard care. Members of a health care team may also be unaware of the implicit biases that influence their interactions with and medical decision making for those individuals living with SCD (see Chapters 2 and 6)
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Furthermore, there are no guidelines or unified infrastructure for the operation of these organizations and advocacy groups. Despite their key role for the SCD population, they also have traditionally not been recognized as part of the SCD care delivery system (see Chapter 8)
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High-quality care is currently better established for children, although there is room for improvement; quality indicators for adults with SCD are significantly underdeveloped and clinical guidelines for high-quality care lack a strong evidence base. As individuals with SCD survive into adulthood, information is needed about the appropriate service needs, and this need may require longitudinal
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Wagner's model emphasizes the foundational partnership between the care team and an activated and empowered patient as being crucial for care delivery. The model also underscores the importance of family members and community service providers in the care delivery system.
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SCD = care cell disease. SOURCES: IOM, 2012; originally adapted from Wagner, 1998.
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Several centers of excellence in SCD have made efforts to establish learning collaboratives that define these care delivery standards, leveraging quality improvement measures to ensure that every patient has access to standardized care at all times, with ongoing data monitoring to track the processes' effectiveness. For example, the SCD Emergency Department Learning Collaborative recently supported quality improvement interventions across three sites to improve time to first analgesia for acute SCD pain, and the Hemoglobinopathy Learning Collaborative has focused on strategies that result in more coordinated and appropriate care in order to achieve fewer complications, acute care visits, and hospitalizations; enhanced QOL; and more compassionate and respectful treatment from the health care system.
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is made up of a strategic vision, eight overarching strategies or "pillars" that support the vision, and foundational Vision Long, healthy, productive lives for those living with SCD and those with SCT with SCD across the life span characterize the burden of disease, outcomes, and the needs of those Strategy A: Establish a national system to collect and link data to and nonclinical supportive services to all persons living with SCD Strategy B: Establish organized systems of care that ensure both clinical therapies for SCD Strategy F: Address barriers to accessing current and pipeline Strategy C: Strengthen the evidence base for interventions and Strategy E: Improve SCD awareness and strengthen advocacy efforts quality of SCD care disease management and implement widespread efforts to monitor the Strategy G: Implement efforts to advance understanding of the full Strategy D: Increase the number of qualified health professionals impact of SCT on individuals and society providing SCD care Strategy H: Establish and fund a research agenda to inform effective programs and policies across the life span Foundational Principles Safe · Effective · Patient-centered · Timely · Efficient · Equitable · Ethical FIGURE S-3 Strategic plan for improving SCD care and outcomes in the United States. NOTE: SCD = sickle cell disease; SCT = sickle cell trait.
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In order to make meaningful and sustained progress on the strategic plan, OASH at HHS should appoint an oversight body with members from across HHS agencies to oversee the roll-out of the strategic plan and blueprint. The appointment of the oversight body should be immediate, and the current HHS Sickle Cell Disease Workgroup, which has representation from 11 HHS agencies, would be one option for such an interagency group.
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Timeframe: 2–3 years Recommendation 5-1: The Office of the Assistant Secretary for Health, through the Office of Minority Health, should convene a panel of relevant stakeholders to delineate the elements of a comprehensive system of sickle cell disease (SCD) care, including community sup ports to improve health outcomes, quality of life, and health inequali ties.
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Recommendation 4-1: Private and public funders and health profes sional associations should fund and conduct research to close the gaps in the existing evidence base for sickle cell disease care to inform the development of clinical practice guidelines and indicators of high quality care. Timeframe: 3–5 years Recommendation 5-4: The National Heart, Lung, and Blood Institute; Health Resources and Services Administration; Centers for Disease Con trol and Prevention; and U.S.
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Timeframe: 1–2 years Strategy D: Increase the number of qualified health professionals pro viding SCD care by enhancing existing health professional training and accreditation programs and incentivizing providers to provide compas sionate and high-quality care. This strategy can be achieved through the following recommended action steps.
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Recommendation 6-5: Health professional associations (American So ciety of Hematology, American College of Obstetricians and Gynecolo gists, American College of Emergency Physicians, American Academy of Family Physicians,3 American Academy of Pediatrics, National Med ical Association, American College of Physicians) and organizations for other relevant health professionals such as advanced practice providers, nurses, and community health workers should convene an Academy of Sickle Cell Disease Medicine (SCD)
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Department of Health and Human Services, in collaboration with state health departments and health care providers, should partner with community-based organizations and community health workers to engage the sickle cell disease (SCD) popu lation in designing educational and advocacy programs and policies and in disseminating information on health and community services to individuals living with SCD and their caregivers.
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Federal and private funders should collaborate to provide funding to clinician scientists and scholars with expertise in SCD, race, and stigma to advance research on pressing topics. The oversight body established by OASH at HHS should col laborate with health professional associations, researchers, individuals living with SCD, and funders to develop a robust research agenda with priority topics that need to be studied.
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