Welding the Gap on Sickle Cell Education

Sickle cell disease (SCD) represents one of the most striking intersections of clinical complexity and health equity in medicine. It affects approximately 100,000 people in the United States, disproportionately Black Americans, and is associated with high morbidity, early mortality, high healthcare utilization, and systemic bias. It is also a valuable model for understanding pathophysiology, bioethics, and advocacy work, yet it remains deprioritized in medical education. Across the medical training continuum, SCD is taught sporadically, superficially, or in some cases not at all. As a result, many trainees begin independent practice without the knowledge, confidence, or skills required to care for this population, contributing to a long-recognized workforce shortage. Physicians report discomfort in caring for patients with SCD, magnifying the disparities in care for this complex patient population [1]. Published data on SCD educational curricula have primarily focused on pain management and bias, both necessary components of education, but have lacked in comprehensive training to manage the acute and chronic complications associated with SCD. The SCD education gap in training was brought into focus by a 2024 study conducted among 15 pediatric and adult hematology-oncology fellows to understand their perspectives with SCD education and clinical care [2]. Trainees expressed sparse or absent didactic content on SCD, with some trainees receiving only one or no formal SCD lecture in residency or fellowship. Most trainees felt unprepared to care for patients with SCD, reinforcing a cycle of inadequate training, clinician discomfort, and reduced interest in SCD care. These findings, consistent across institutions with and without formal SCD programs, point to a structural educational gap that spans the entire medical continuum. Because SCD affects less than 200,000 people in the United States, it is classified as a rare disease, although it affects millions globally. The experience of persons with SCD is shaped not only by disease pathophysiology but also by layers of structural racism that influence their care. Despite this complexity, SCD occupies a disproportionately small portion of medical curricula relative to other less prevalent hematologic disorders, such as hemophilia and cystic fibrosis (<100,000 in the United States combined). This educational gap is rooted in a longstanding misconception that SCD is a “rare” or predominantly pediatric condition. Concerns about an already overcrowded curriculum and competing priorities were raised over three decades ago [3], during the height of the human immunodeficiency virus epidemic, which contributed to limited emphasis of SCD education. The impact of these misconceptions persists today. The Accreditation Council for Graduate Medical Education (ACGME) utilizes milestones as a framework for the assessment of trainee development in key dimensions of physician competency. Pediatric hematology-oncology ACGME fellowship requirements note “hemoglobinopathies, to include the thalassemia syndromes” as a core competency. Adult hematology-oncology ACGME fellowship requirements delineate core competencies in specific oncologic disease categories (i.e., breast, gynecologic, lung), while classical hematology is limited to a single core competency in “acquired and congenital disorders of red cells, white cells, and platelets.” Explicit mention of SCD as an area of proficiency is absent from both adult and pediatric core competencies, but rather categorized under a broad competency, despite the burden of disease within the United States and worldwide. This signals where programs should invest their educational resources. For training programs faced with curricular overload, this implicit deprioritization leads to minimal structured content, limited SCD-specific rotations, and inadequate evaluation of trainee competency in SCD care. The message is subtle but powerful: essential competencies for SCD care is optional. SCD programs are often housed in academic medical centers. While many centers have appropriately built specialized SCD programs that improve patient outcomes, aligning these care models with the educational needs of trainees is essential to prevent further siloing of patients from learners. The sequestration of SCD patients can inadvertently undermine workforce development and perpetuate inequity. As highlighted in the above-mentioned study, trainees identified several barriers to developing competency in SCD care, including limited clinical exposure and insufficient access to SCD expertise. This was even the case at institutions that have established SCD programs. Therefore, the availability of an SCD program with robust clinical resources (i.e., SCD expertise, dedicated SCD unit, transfusion support) does not automatically translate into prioritizing SCD education, such as through a dedicated rotation or structured curricula. This paradox of delivering higher-quality care while inadvertently restricting trainee exposure has the potential to hinder the development of a strong and sustainable SCD workforce. Addressing the SCD educational gap requires integrating SCD-focused education throughout the medical training lifespan to improve physician competency and confidence, which will serve to expand the workforce. SCD offers a model for teaching foundational and advanced concepts in medicine, including genetics, complex pathophysiology, chronic disease management, bioethics, advocacy, and health policy. Addressing longitudinal gaps in SCD education requires a comprehensive framework that spans the entire medical training continuum, beginning in medical school and continuing through residency and fellowship. Beginning in the pre-clinical years, SCD can be woven into modules such as genetics, hemoglobinopathies, pain physiology, and social determinants of health. Early exposure through patient panels provides an opportunity for patients to situate their illness within the broader context of their lives and serve as both expert and educator. When paired with case-based learning, these educational approaches provide students with the opportunity to understand the lived experience of SCD, which also counteract stereotypes and bias. These strategies can be amplified with standardized patient simulation sessions. Clinical clerkships also provide natural touchpoints for SCD education, particularly in pediatrics, internal medicine, emergency medicine, and obstetrics-gynecology. These are rotations where patients with SCD frequently interface with the healthcare system. Entrustable professional activities might include managing acute pain episodes, counseling patients about disease modifying agents such as hydroxyurea, evaluating end-organ damage, and reflecting observed episodes of implicit and overt bias. These educational initiatives assist the learner in developing foundational skills in the care of SCD and complex patients as they enter training. The continuation of clinical competency development occurs in residency and fellowship. To further address gaps in exposure, academic centers can take intentional steps to align SCD care models with the educational needs of trainees. One concrete approach is to establish a required SCD rotation during hematology-oncology fellowship that includes both inpatient and outpatient components under the supervision of physicians with SCD expertise, when available. Away SCD electives, such as the American Society of Hematology (ASH) SCD Away Elective, offer an experiential learning opportunity when such electives are not available at the trainees’ home institution [4]. Such rotations promote competency in acute management and longitudinal care, build confidence in complex decision-making, and help ensure that trainees are not detached from meaningful SCD clinical experiences. Similarly, structured elective opportunities for medical students and residents to rotate with dedicated SCD teams can broaden early exposure and cultivate interest in the field. Remote didactics, virtual case conferences or “tumor boards,” and teleconferences such as ECHO can expand access to SCD expertise for case-based learning at institutions without local expertise. These opportunities should be highlighted to training program directors as resources for trainees. The deficiency of SCD education across the medical continuum reflects a system that has not consistently equipped physicians with the skills necessary to care for patients with SCD. Building the pipeline for SCD care requires the recognition that medical education shapes the workforce and, ultimately, patient outcomes. This can be accomplished with intentional redesign of SCD education across the medical education continuum. Engaging societies such as ACGME to explicitly incorporate SCD-specific competencies into its milestones signals to training programs that proficiency in SCD care is a core expectation.