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For the 100,000 Americans with sickle cell disease, the majority of whom are African-American, most days mean coping with the complications and consequences of their chronic disease. In addition to fatigue and (often) daily pain with intermittent severe pain episodes, these individuals are at constant risk of infection and ongoing damage to most body organs.
The underlying cause of SCD is a mutation in the hemoglobin molecule, which is responsible for carrying oxygen to the body. This mutation causes red blood cells to break open, leading to chronic anemia and blood vessel damage, and to form a sickle shape that blocks small blood vessels, interrupting the flow of blood and oxygen to vital organs. While most people with this lifelong, inherited blood disorder survive into adulthood, their life expectancy is approximately 30 years lower than that of the general population.
A key contributing factor to the shorter lifespan of individuals with SCD is lack of access to high-quality care throughout their lifetime, particularly in adulthood. Children with SCD are often treated by pediatric hematologists, who specialize in this complex disease.
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Once children transition out of pediatric care, they require care from an adult-focused SCD specialist. However, the insufficient number of these specialists often causes individuals to rely on the emergency department as their primary source of care. Early adult life is associated with increased severe vaso-occlusive pain episodes, ED visits, hospitalizations and mortality.
Reliance on the ED as the primary source of care, instead of a dedicated “medical home,” is problematic for a number of reasons. Emergency physicians are not usually familiar with SCD or trained in current standard-of-care therapies for the many complications of the disease. Even more concerning is the frequent discrimination experienced by SCD patients due to the stigma related to the need for chronic pain medication.
Too often, SCD patients who go to the ED are turned away because the staff assumes they are drug seekers rather than patients in need of legitimate pain relief. With the current opioid crisis contributing to this stigmatization, it is not surprising that SCD patients often avoid the ED altogether and seek treatment only as a last resort, which can worsen long-term outcomes.
Recently, a group of SCD experts from across the United States joined together at the Sickle Cell Disease Access to Care Summit to exchange ideas and share examples of successful solutions to address the inequities and challenges in access to care facing the SCD community. Case studies presented at the summit highlighted approaches that have made a meaningful impact on SCD patient care and provide an encouraging glimpse of what is possible. These approaches include:
1) Establishing a dedicated SCD clinic or day clinic within an existing hospital or medical center;
2) Collaborating with local providers to develop a network to broaden access to providers with SCD expertise;
3) Establishing structured programs to improve the transition between pediatric and adult care;
4) Leveraging existing infrastructure to engage non-SCD stakeholders in the care of SCD patients.
Because the effective approaches utilized by health care providers and payers to address SCD vary greatly based on institutional and regional considerations, there is no “one-size-fits-all” solution to developing the framework to enable and empower individuals with SCD to access the care they need and deserve. However, several key themes emerged across all approaches.
Among summit attendees, the consensus was that a single, initial medical touchpoint for all health issues — a “medical home” — is essential because it creates trust between physicians and patients. A medical home should ensure that affected individuals have access to care coordination, multidisciplinary care and continuity of care over time.
Summit attendees also agreed that, regardless of the approach taken, having a champion is critical. The champion, who could represent a specific medical specialty, such as hematology, should take ownership of engaging the required cross-functional disciplines. They should serve as an advocate for SCD patients both within a specific institution and the broader health care ecosystem. It is essential that they take a personal stake in bringing together the necessary resources.
In addition, it was highlighted that accessing and leveraging health care utilization data is critical in successfully implementing a multidisciplinary SCD program. For example, data that shows a reduction in the number or duration of hospitalizations, as well as a reduction in ED visits or readmission rates, can be instrumental in demonstrating to hospital administrators and other health care practitioners how a multidisciplinary program can positively and cost-effectively impact the delivery of care to individuals with SCD.
As one summit attendee said, “Data is power.” However, despite the clear importance of data, it can be expensive to purchase (such as from the Centers for Medicare and Medicaid Services) or unavailable to providers at the state level.
Through partnerships between health care providers, biotech industry professionals, leaders of community-based organizations and policymakers, we have the opportunity and obligation to significantly improve the lives of adults with SCD by helping them access consistent, comprehensive, quality health care throughout their lifetime. Current limitations include lack of support from hospital administrators, misunderstanding of SCD with disease-specific discrimination and stigma, and a fragmented health care system.
Despite these challenges, we must create a treatment environment rooted in compassion and a deep understanding of SCD. We must become champions for our SCD patients and advocate for health care decisions to be driven by data and science, rather than racial bias, discrimination and inaccurate information. And we must influence private and public payers to allocate resources to enable the delivery of high-quality care that individuals living with SCD deserve.
Jonathan Sorof, M.D., began his medical career conducting NIH-funded clinical research in pediatric cardiovascular disease at Texas Medical Center and is currently senior vice president, medical and regulatory affairs, at Global Blood Therapeutics, which hosted the SCD Access to Care Summit.
The opinions expressed above are supported by the SCD Access to Care Summit Steering Committee: Biree Andemariam, M.D., University of Connecticut; Kenneth Bridges, M.D., GBT; Andrew Campbell, M.D., George Washington University School of Medicine and Health Sciences; Payal Desai, M.D., The Ohio State University; James R. Eckman, M.D., Emory University School of Medicine; Julie Kanter, M.D., Medical University of South Carolina; Kim Smith-Whitley, M.D., Perelman School of Medicine at the University of Pennsylvania; John J. Strouse, M.D., Ph.D., Duke University School of Medicine.
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