Earlier this year, advocates from across California gathered at the State Capitol for the first-ever California Sickle Cell Disease (SCD) Advocacy Day organized by Cayenne Wellness. The event aimed to raise awareness, advance policy solutions, and amplify the voices of people living with a disease that remains widely misunderstood. Among those advocates was Davita McDaniel.
Despite not feeling well, McDaniel traveled to Sacramento to stand alongside other sickle cell warriors, holding signs calling for increased awareness and research funding. Her participation reflected a reality many people with SCD face every day: navigating a healthcare system that often fails to fully understand their experiences.
One interaction from the event stayed with her. An elderly woman approached the group and admitted she knew very little about sickle cell disease. After listening to advocates explain the challenges patients face, she reached into her purse and donated what McDaniel described as “her last $20.” This gesture indicated that people care when they understand.
Unfortunately, awareness of sickle cell disease remains low, even though an estimated 6,000 to 7,000 Californians live with the condition and many more carry the sickle cell trait.¹ September is National Sickle Cell Awareness month, an opportunity to address a concern shared by many in the sickle cell community: patients are too often treated as stereotypes rather than individuals.
Research consistently shows that people with SCD experience delays in treatment, undertreatment of pain, and stigma in healthcare settings.² Many report being viewed as “drug-seeking” rather than as individuals experiencing one of the most painful chronic conditions in medicine. Studies have also documented the role of racial bias in shaping these experiences.³
California has made significant investments in health equity through Medi-Cal reforms and initiatives such as CalAIM. Yet patients with SCD continue to face uneven access to specialty care, inconsistent use of evidence-based treatment guidelines, and significant variation in care depending on where they seek treatment.⁴
At the federal level, policymakers have also recognized these challenges. The proposed Sickle Cell Disease Comprehensive Care Act (S.721) seeks to improve access to comprehensive care, strengthen workforce capacity, and reduce longstanding disparities experienced by individuals living with SCD.⁵ Its goals reflect what advocates in California have been saying for years: fragmented systems produce fragmented outcomes.
These gaps are not merely clinical problems; they are policy problems. Advocates are calling for statewide adoption of evidence-based sickle cell treatment standards, expanded provider education, increased research funding, stronger support during the transition from pediatric to adult care, and greater investment in community-based programs. These reforms would help ensure that quality care does not depend on geography, race, or whether a provider happens to understand sickle cell disease.
California has an opportunity to become a national leader in sickle cell policy. But meaningful change begins by listening to those most affected. Events like California’s first Sickle Cell Disease Advocacy Day send a clear message: people living with sickle cell disease are not waiting quietly for change. They are asking policymakers and healthcare systems to do something simple but powerful: listen and take action accordingly.
Co-Author Bios and photographs:
Carlene O Fider,PhD
Dr. Fider is an early-career social and behavioral scientist with extensive experience in coordinating multidisciplinary efforts. She is also Assistant Clinical Professor in the Division of Interdisciplinary Studies in the School of Behavioral Health. Her research consistently supports the advancement of minoritized voices and highlights ways to reduce disparities that impact those who are underserved, underrepresented and under resourced.
Lisa R. Roberts, DrPH
Dr. Roberts is a Professor and the Maureen Maxwell Endowed Chair for Research at the School of Nursing, with a secondary appointment in the Division of Interdisciplinary Studies in the School of Behavioral Health. Her primary research interest concerns maternal health and coping with perinatal grief. 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.
Acknowledgement: We would like to thank Davita McDaniel for sharing her experiences with us, advocating for individuals living with sickle cell disease, and exemplifying courage, resilience, and unwavering commitment to advancing awareness, equity, and improved care for the sickle cell community.
Ms. McDaniel is a 60-year-old mother of four adult children and grandmother of five. As the only one of six siblings living with sickle cell disease, she has been a proud Sickle Cell Warrior since age three and is deeply passionate about improving the care and comfort of fellow warriors during hospital stays. She enjoys dancing, singing, cooking, bowling, reading, and spending time with her family while bringing joy and smiles to those around her.
References:
- Tracking California/Public Health Institute. Improving Access to Care for Californians with Sickle Cell Disease.
- American Society of Hematology. Individuals with Sickle Cell Disease Face Long Delays to Pain Care in Emergency Department (2025).
- Kaltwasser, J. (2024). Patients with SCD Report Discrimination Based on Race, Pain, and Other Factors. American Journal of Managed Care.
- San, A., Clyde, C., Yap, D., Paulukonis, S., Valle, J., & Quirolo, K. (2025). Identifying Gaps in Sickle Cell Disease Healthcare Resources Across Hematology Clinics in California. Journal of Sickle Cell Disease, 2(1).
- Institute for Health Policy Leadership. (2025, July 15). Addressing Disparities in Healthcare: An Overview of the Sickle Cell Disease Comprehensive Care Act (S.721). https://ihpl.llu.edu/blog/addressing-disparities-healthcare-overview-sickle-cell-disease-comprehensive-care-act-s721