Reviving a Forgotten Policy: California’s Untapped Opportunity for Sickle Cell Awareness

California has long been recognized as a leader in public health innovation. Yet, in the case of sickle cell trait (SCT) awareness and screening, an overlooked policy—one that has remained largely underutilized for decades—highlights a critical gap that has a significant impact on community knowledge, awareness, and maternal health outcomes.

California Health & Safety Code §125025 explicitly authorizes schools to offer sickle cell testing at key educational milestones: upon first enrollment in elementary school, again at entry into junior high or high school, and at the time of applying for a marriage license.¹ While permissive rather than mandatory, this law reflects an early recognition of the importance of genetic awareness, prevention, and informed decision-making – particularly decisions that shape reproductive planning and maternal health trajectories.

When this law was enacted, it signaled a forward-thinking approach to public health, positioning schools as critical access points for early detection and education. By embedding testing opportunities within routine educational transitions, the policy acknowledged that awareness of SCT status could influence both health outcomes and reproductive decision-making across the lifespan,² including risks that directly affect pregnancy, childbirth, and maternal well-being.

This is particularly important because individuals with SCT are typically asymptomatic and may not know their status without testing. However, when two carriers have children, there is a 25% chance of having a child with sickle cell disease (SCD), a serious and lifelong condition³ that is also associated with increased maternal morbidity, pregnancy complications, and higher-risk obstetric outcomes.⁴ Increased rates of SCT in a population contribute to higher rates of SCD, amplifying these risks. Early awareness, therefore, becomes a powerful tool for prevention and informed planning.  Additionally, SCT itself has been associated with elevated maternal risks, including stillbirth and other adverse pregnancy outcomes, further showing the importance of early identification.⁵ 

Despite its promise, §125025 is rarely implemented in practice. Most schools in California do not offer sickle cell testing, and many families remain unaware that such a policy even exists. This disconnect reflects a broader issue in public health: the presence of policy alone does not guarantee implementation or impact,⁶ particularly when missed opportunities contribute to avoidable maternal and reproductive health disparities.

The consequences of this gap are significant:

• Adolescents often reach adulthood without knowing their SCT status.
• Opportunities for early education and counseling are missed.
• Preventive conversations about reproductive risk and maternal health planning are delayed or never occur.

This underutilization is especially concerning given persistent health disparities associated with SCD, which disproportionately affects Black and other historically underserved populations.⁷ The intersection of genetic risk and negative maternal health outcomes makes early awareness even more critical.

Rather than creating entirely new policy, California has an opportunity to modernize and activate what is already on the books. Several practical strategies could significantly increase the relevance and impact of §125025:

1. Integration with School-Based Health Programs
   Sickle cell testing could be incorporated into existing school health services or wellness initiatives, particularly in middle and high school settings, where preventive health interventions are commonly delivered.⁸ This would support earlier awareness that can inform future reproductive and maternal health decisions.
2. Alignment with Athletic Programs
   Student-athletes already undergo health screenings. Integrating SCT awareness and optional testing into athletic clearance processes could improve reach while addressing known risks associated with intense physical exertion in individuals with SCT,⁹ while also creating an additional entry point for conversations about long-term health and future pregnancy considerations.
3. Connection to Adolescent Reproductive Health Education
   Health education curricula present a natural opportunity to introduce genetic literacy, including SCT. Pairing education with optional testing could empower students with actionable knowledge during a critical developmental stage,⁷ including understanding how genetic traits can influence maternal health risks and pregnancy outcomes later in life.
4. Community and Family Engagement
   Schools could partner with community-based organizations and healthcare systems to provide culturally responsive education and follow-up counseling, which has been shown to improve engagement and health literacy.⁸ These efforts can also help families better understand maternal health implications and support informed reproductive decision-making across generations.

California’s sickle cell testing law is not new, but its relevance is more urgent than ever. At a time when precision health, prevention, and health equity, particularly in maternal health, are central to public health priorities, §125025 offers a ready-made, scalable framework for improving awareness and outcomes. The challenge now is not whether to create policy, but whether to activate and modernize what already exists. By bridging the gap between policy and practice, California can transform a long-dormant statute into a meaningful tool for early detection, informed decision-making, and improved maternal health and intergenerational health outcomes for future generations.

Co-Author Bios

 

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, 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:

1. California Health & Safety Code §125025. 
2. American Society of Hematology. (2020). Sickle cell trait and disease overview. 
3. Centers for Disease Control and Prevention (CDC). (2023). What is sickle cell trait?
4. Early, M. L., Eke, A. C., Gemmill, A., Lanzkron, S., & Pecker, L. H. (2023). Severe Maternal Morbidity and Mortality in Sickle Cell Disease in the National Inpatient Sample, 2012-2018. JAMA Network Open, 6(2), e2254552-e2254552. https://doi.org/10.1001/jamanetworkopen.2022.54552 Gostin, L. O. (2014). Public health law: Power, duty, restraint. University of California Press. 
5. Canelón, S. P., Butts, S., & Boland, M. R. (2021). Evaluation of Stillbirth Among Pregnant People With Sickle Cell Trait. JAMA Network Open, 4(11), e2134274-e2134274. https://doi.org/10.1001/jamanetworkopen.2021.34274 
6. National Academies of Sciences, Engineering, and Medicine (NASEM). (2020). Addressing sickle cell disease: A strategic plan and blueprint for action. 
7. Centers for Disease Control and Prevention (CDC). (2021). School health guidelines to promote healthy behaviors. 
8. Harmon, K. G., et al. (2012). Sickle cell trait associated with a higher risk of exertional death in Division I football athletes. British Journal of Sports Medicine, 46(5), 325–330. 
9. Treadwell, M. J., et al. (2016). Community-based sickle cell trait education and counseling: A model for increasing awareness. Journal of Community Health, 41(2), 344–352.

Funding:  

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under cooperative agreement [Grant Number UR6MC50347], Maternal Health Research Collaborative for Minority Serving Institutions The information, content and/or conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.