Addressing Sickle Cell Disease A Strategic Plan and Blueprint for Action (2020) / Chapter Skim
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9 Strategic Plan and Blueprint for Sickle Cell Disease Action
9 Strategic Plan and Blueprint for Sickle Cell Disease Action
Pages 397-418
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From page 397... ...
action identifies the strategic vision, strategies, and action steps for improving health care and health outcomes for individuals living with SCD. The fundamental vision of the framework is to advance and extend healthy, productive lives for individuals living with SCD and to advance understanding of sickle cell trait (SCT)
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As the longevity of people living with SCD increases, so do the number and types of complications requiring comprehensive and coordinated care from a multidisciplinary team of experts and an array of health and non-health services. Only a limited number of health care professionals is willing and able to provide the necessary SCD care, and the health care delivery system is poorly organized to facilitate the needs of this population.
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The seven foundational principles for action for SCD in the United States are described below.
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The appointment of the oversight body should be immediate, and the current HHS Sickle Cell Disease Workgroup, which has
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The recommended action steps to achieve this strategy are listed below. Recommendation 3-1: The Centers for Disease Control and Prevention should work with all states to develop state public health surveillance systems to support a national longitudinal registry of all persons with sickle cell disease.
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Timeframe: 1–2 years Recommendation 3-3: The Office of the Assistant Secretary for Health should establish a working group to identify existing and disparate sources of data that can be immediately linked and mined. These data can be used to provide needed information on sickle cell disease health care services usage and costs in the short term.
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Recommendation 2-1: The Social Security Administration should re view disability insurance qualifications to ensure that the qualification criteria reflect the burden of the disease borne by individuals with sickle cell disease. In 2015 the Social Security Administration (SSA)
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Relevant stakeholders may include the National Minority Quality Forum, National Medical As sociation, American Society of Pediatric Hematology/Oncology, American Academy of Pediatrics, American Board of Pediatrics, American College of Physicians, American Society of Hematology, Sickle Cell Disease Associa tion of America Inc., Sickle Cell Adult Provider Network, and other key clinical disciplines and stakeholders engaged in SCD care; health systems; and individuals living with SCD and their families. ImproveCareNow, a collaborative community to transform health care for children and young adults with Crohn's disease and inflammatory bowel disease, offers a model.
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Timeframe: 2–3 years Recommendation 5-2: The Centers for Medicare & Medicaid Services should work with state Medicaid programs to develop and pilot re imbursement models for the delivery of coordinated sickle cell disease health care and support services. The payment system in the United States is often an impediment to the delivery of coordinated, multidisciplinary care for individuals living with lifelong diseases.
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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 in order to inform the development of clinical practice guidelines and indicators of high-quality care. Specific areas for research include understanding the health and psycho social needs of SCD patients and the impact of the disease over time.
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Timeframe: 3–5 years Recommendation 6-1: Federal agencies including the Agency for Healthcare Research and Quality; National Heart, Lung, and Blood Institute; Health Resources and Services Administration; Centers for Disease Control and Prevention; and U.S. Food and Drug Administra tion should work together with and fund researchers and professional associations to develop and track a series of indicators to assess the quality of sickle cell disease care including patient experience, the pre vention of disease complications, and health outcomes.
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This objective can be achieved through the following action steps. Recommendation 6-4: The National Institutes of Health should dis seminate information on loan repayment opportunities to incentivize health care professionals interested in conducting research on sickle cell disease (SCD)
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Recommendation 6-5: Health professional associations (American Society of Hematology, American College of Obstetricians and Gynecol ogists, American College of Emergency Physicians, American Academy of Family Physicians, American Academy of Pediatrics, National Medi cal 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 (SCD)
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Timeframe: 2–3 years Recommendation 6-6: Health professional associations and graduate and professional schools should develop early and effective mentoring programs to link early career health professionals with seasoned pro viders to generate interest in sickle cell disease care. ASH has an effective mentoring program (ASH Ambassador)
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Timeframe: 2–3 years Recommendation 8-2: The U.S. 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)
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Department of Health and Human Services should encourage and reimburse the practice of shared deci sion making and the development of decision aids for novel, high-risk, potentially highly effective therapies for individuals living with sickle cell disease. In addition to active support for informed consent for clinical trial participation, emphasis should be placed on counseling patients on the uptake of therapies that are high risk and curative, that have high clinical uncertainty, or that are preference sensitive, such as discussions about fertility preservation.
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The lessons and best practices from these disparate efforts need to be standardized, scaled, and adopted for inclusion in every clinical trial involving individuals living with SCD. Timeframe: 2–3 years Strategy G: Implement efforts to advance understanding of the full im pact of SCT on individuals and society.
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Timeframe: 2–3 years Recommendation 4-3: The Office of the Assistant Secretary for Health should partner with community-based organizations, the media, and other relevant stakeholders to disseminate information to promote awareness and education about the potential risks associated with sickle cell trait. As discussed in Chapter 4, SCT is not a disease, and individuals with it can live long, healthy lives.
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The oversight body established by OASH should col laborate with health professional associations, researchers, patients, and funders to develop a robust research agenda with priority topics that need to be studied. Organizations such as ASH have developed a comprehensive list of SCD research priorities that can serve as a start ing point for this strategy.
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3. Research that includes total health care costs as a secondary end point in pivotal clinical trials of new SCD therapy.
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2018. Transition from pediatric to adult care: Sickle cell disease.
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