For African American young men aged 18–25, life is a balancing act between chronic illness and developing their independence. Living with sickle cell disease (SCD) or sickle cell trait means grappling with a condition that shapes every aspect of their lives. As they transition into adulthood, the challenges only grow—navigating a fragmented healthcare system, combating harmful stereotypes, and managing a relentless illness that defines their daily existence. Yet, these young men show remarkable resilience in the face of such adversity.1
Sickle cell disease affects approximately 100,000 individuals in the United States, disproportionately impacting African American and some Latino communities.2 Unlike healthy red blood cells, which are round and flexible, the red blood cells of individuals with SCD are crescent or "sickle"-shaped. These abnormally shaped cells block blood flow, causing severe pain and many other complications.3
A Broken Transition: From Pediatric to Adult Care
For many young men, the transition from pediatric to adult care is burdened with obstacles. Pediatric providers often go to great lengths to ensure comprehensive care, offering specialized support to address medical crises, manage medications, and provide some emotional guidance. However, this support disintegrates when young adults move into the adult healthcare system.
Without transitional programs, these young men lose access to trusted pediatric sickle cell care teams that understand their condition and provide holistic care. Instead, they are thrust into a system ill-equipped to manage their unique needs, leaving them vulnerable to gaps in care that can exacerbate their condition. And all this happens at a time when all persons their age grapple with seeking independence.
The Weight of Stereotypes
At the intersection of race, age, and illness, young African American men with SCD face another barrier: stigma.4 Too often, they are labeled as "drug seekers" when requesting the medications required to manage the intense pain of a sickle cell crisis. These damaging stereotypes delay care and deepen mistrust between patients and healthcare providers, further marginalizing this vulnerable population.5
A Century of Neglect
Despite being recognized over a century ago, SCD remains one of the most underfunded and understudied conditions. Moreover, the transition from pediatric to adult systems represents one of the most significant gaps in the healthcare system, with many young men falling through the cracks during this critical period. More research and funding are urgently needed to address this gap.
A Policy with Promise—and Potential for Improvement
The Sickle Cell Disease Comprehensive Care Act (S.996 – 118th Congress, 2023–2024) offers a glimpse of progress. This five-year initiative aims to improve access to services for individuals with SCD by expanding multidisciplinary care teams, assessing barriers to care, and identifying best practices to promote health equity. At least ten states will receive grants under this policy to enhance mental health, ancillary services, and support for individuals with SCD. The potential impact of this policy is significant, as it could lead to improved care and support for young men with SCD.6
While the intent is commendable, the policy needs specific provisions for transitional-age youth and to address how providers will acquire the expertise needed to care for this population. Additionally, the policy provides no mechanisms for auditing or accountability, relying solely on periodic reports from participating states. With no guarantee of renewal after five years, the policy risks leaving gaps unaddressed once funding ends. Five years is too little time to change complex health systems.
Bridging the Gap: A Holistic Approach
To ensure young African American men with SCD receive the care they deserve, policies must more clearly address the unique challenges of transition. This includes:
- Transition readiness assessments to prepare young adults for adult care.
- Clear instructions for managing medications and preventing pain crises.
- Guidelines for personal care, coping strategies, and self-advocacy.
- Programs that leverage media and interactive Q&A sessions to improve transition readiness.7
It is time to act. Policymakers, healthcare providers, and advocates must work together to close the gaps in care for young persons with SCD. We cannot afford to ignore this population. By expanding holistic care models, addressing the intersection of race and chronic illness, and committing to long-term solutions, we can ensure this group of young people poised for independence and success receive the care, respect, and support they deserve.
Co-Author Bios
Imani Austin, MSW, MSCJ, Doctoral Candidate
Imani is a dedicated social worker and student researcher passionate about advocating for underserved populations. With dual master's degrees in criminal justice and social work from Loma Linda University, she has extensive experience in child welfare, adoption, and forensic mental health. In her current role as a regional social work manager for a San Francisco Bay Area health plan, she leads a team that focuses on supporting marginalized seniors. As a doctoral candidate at Loma Linda University, her research explores the lived experiences of African American men aged 18-25 with sickle cell disease/trait. Her work aims to bridge critical gaps in resources, care, and interventions for this often-overlooked population.
Lisa R. Roberts, DrPH, MSN, FNP-BC, FAAN, FAANP
Dr. Roberts is a Professor and the Research Director at the School of Nursing, with a secondary appointment in the Division of Interdisciplinary Studies in the School of Behavioral Health. She is a Fellow of the American Association of Nurse Practitioners and the American Academy of Nursing. Her primary research interest concerns maternal health and sickle cell disease. Her research interests also include mixed methods and community-based self-help interventions, addressing issues impacting health disparities and vulnerable populations. Her clinical focus as a Family Nurse Practitioner is prevention and primary care.
References:
- Berghs, M. J., Horne, F., Yates, S., Graham, S., Kemp, R., Webster, A., & Howson, C. (2022). Black sickle cell patients' lives matter: Healthcare, long-term shielding and psychological distress during a racialised pandemic in england – a mixed-methods study. BMJ Open, 12(9), e057141. https://doi.org/10.1136/bmjopen-2021-057141
- Lubeck, D., Agodoa, I., Bhakta, N., Danese, M., Pappu, K., Howard, R., Gleeson, M., Halperin, M., & Lanzkron, S. (2019). Estimated life expectancy and income of patients with sickle cell disease compared with those without sickle cell disease. JAMA Network Open, 2(11), e1915374. https://doi.org/10.1001/jamanetworkopen.2019.15374
- National Heart, Lung, and Blood Institute. (n.d.). What is sickle cell disease? NHLBI, NIH. Retrieved December 9, 2024, from https://www.nhlbi.nih.gov/health/sickle-cell-disease
- Jenerette, C. M., Brewer, C. A., Edwards, L. J., Mishel, M. H., & Gil, K. M. (2013). An intervention to decrease stigma in young adults with sickle cell disease. Western Journal of Nursing Research, 36(5), 599–619. https://doi.org/10.1177/0193945913512724
- Sowah, E., Delgado, P., Adewumi, M., Greenough, M. C., Gajjar, S., Pasha, J., Nicks, S., & Hartwell, M. (2022). Use of person-centered language among scientific research focused on sickle cell disease. The Journal of Emergency Medicine, 62(6), 725–732. https://doi.org/10.1016/j.jemermed.2021.12.013
- Library of Congress. (2023, March 28). S.996 - Sickle cell disease comprehensive care act. https://www.congress.gov/bill/118th-congress/senate-bill/996/text. Retrieved December 7, 2024, from https://www.congress.gov/bill/118th-congress/senate-bill/996/text
- Johnson, A. D., Pines, E., Seibenhener, S., & Wilburn, S. (2020). Improving transition readiness in young adults with sickle cell disease. The Journal for Nurse Practitioners, 16(10), e165–e167. https://doi.org/10.1016/j.nurpra.2020.07.026