Navigating Sickle Cell Disease: Bridging Innovation with Impact
Becca Kirkwood, Oncology Nurse Navigator, RN, BSN, BMTCN, OCN, ACS LION
Sickle cell disease (SCD) is a diagnosis that changes lives forever. I’ve seen this first-hand over the years, as I’ve guided people through the physical and mental challenges of the disease.
September is recognized as National Sickle Cell Awareness Month — a reminder of how complex this condition is, the daily struggles people face in managing it, and why easy access to high-quality, affordable care must be the starting point in turning the tide on this debilitating condition.
Sickle Cell Disease: What Employers Should Know
SCD is an inherited blood disorder that affects hemoglobin, the protein that carries oxygen throughout the body. Healthy red blood cells are round and flexible, but with SCD they become rigid, crescent or “sickle” shaped.
In the U.S., more than 100,000 people live with SCD, and 90% are African American. ¹
Because SCD is so complex, treatment must go beyond the disease itself. A holistic approach that cares for the whole person is essential. In my role as a nurse, I advocate for patients and help create a safe, respectful environment that paves the way for better outcomes.
Symptoms Demand a Comprehensive Approach to Care
Symptoms of SCD vary widely, ranging from mild to severe. ² Because oxygen is delivered less effectively to blood cells, people often experience complications requiring care from multiple specialists. In some cases, treatment involves advanced—and costly—options such as stem cell transplants or gene therapy.
Beyond the physical and mental toll, individuals often face misunderstanding in healthcare settings, where their concerns may be met with skepticism instead of compassion. They also encounter disproportionate barriers to care shaped by race, income, geography, and systemic inequities.
The impact on employment is profound. In one study, 70% of working-age adults with SCD (ages 18–65) were not employed. ³ This reality underscores the urgent need for comprehensive, symptom-specific care plans that reflect the condition’s complexity.
How Employers Can Support People Living with Sickle Cell Disease
Employers are uniquely positioned to break down barriers to care and create supportive workplaces. With a personalized and compassionate approach, employees can feel confident in their healthcare journey from the start of their screening and diagnosis to survivorship and caregiving.
Here are three steps employers can take today:
Educate & Empower: Learn about the symptoms, complications, and treatments associated with SCD. Promote organizational awareness to foster empathy and reduce stigma.
Recognize Workplace Needs: Employees may require flexible schedules, time off for medical appointments, and understanding during acute pain episodes.
Build Inclusive Benefits: Ensure benefit designs cover comprehensive, specialty-driven care models that reflect the reality of SCD’s complexity.
Transcarent: Your Partner in Compassionate Care
Navigating a chronic condition like SCD can be overwhelming for both employees and employers. Transcarent prioritizes a comprehensive, compassionate care experience with:
Access to Expert Care: Members can connect with leading hematologists and specialists experienced in SCD management.
Personalized Support: Our compassionate care team provides real-time answers and emotional support, helping employees feel seen, heard, and valued.
Digital Tools for Proactive Care: With the ability to Just Ask Transcarent, our Members can instantly find answers, request a second opinion, or take the next step in their care journey.
Extending Empathy Beyond the Diagnosis
Any diagnosis can reshape someone’s life. Employers who partner with Transcarent demonstrate a commitment to ensuring that those facing chronic conditions like SCD are supported every step of the way. By prioritizing access, equity, and support, employers not only improve outcomes for employees but also demonstrate a deep commitment to compassionate, inclusive care. With the right approach, employers can help their people not just survive but truly thrive.
Sources:
About sickle cell disease. (2025, February 21). Sickle Cell Disease (SCD). https://www.cdc.gov/sickle-cell/about/index.html
Pires, R. P., Oliveira, M. C., Araújo, L. B., Oliveira, J. C., & Alcântara, T. M. (2022). Impact of sickle cell disease on work activity. Revista Brasileira De Medicina Do Trabalho, 20(02), 272–278. https://pmc.ncbi.nlm.nih.gov/articles/PMC9458333/
Symptoms | NHLBI, NIH. (2024, August 20). NHLBI, NIH. https://www.nhlbi.nih.gov/health/sickle-cell-disease/symptoms
