Sickle Cell Moms Win with WHO’s Guide
Geneva: The World Health Organization’s first global guideline on managing sickle cell disease (SCD) during pregnancy, with over 20 evidence-based recommendations, aims to enhance maternal and newborn outcomes worldwide. Released today, it addresses folic acid supplementation, pain management, infection prevention, transfusions, and monitoring, tackling a life-threatening condition affecting millions.
Sickle cell disease, a group of inherited blood disorders characterised by crescent-shaped red blood cells that obstruct blood flow, leads to severe anaemia, intense pain episodes, recurrent infections, and critical medical emergencies such as strokes, sepsis, or organ failures. During pregnancy, the heightened physiological demands for oxygen and nutrient supply exacerbate these risks, placing women with SCD at a 4- to 11-fold higher risk of maternal death compared to those without the condition. These women are also more prone to obstetric complications like pre-eclampsia, while their babies face increased risks of stillbirth, preterm birth, or being born small for gestational age. With an estimated 7.7 million people living with SCD globally—a figure that has risen by over 40% since 2000—the disease claims over 375,000 lives annually. It is most prevalent in malaria-endemic regions, particularly sub-Saharan Africa, which accounts for approximately 80% of cases, as well as parts of the Middle East, the Caribbean, and South Asia. Global population movements and improvements in life expectancy have further expanded the sickle cell gene’s prevalence, necessitating enhanced expertise among maternity care providers worldwide.
Until now, clinical guidance for managing SCD in pregnancy has primarily relied on protocols developed in high-income countries, which are often impractical for low- and middle-income settings where the majority of cases and deaths occur. The WHO’s new guideline addresses this critical gap by providing evidence-based recommendations tailored to diverse healthcare contexts, particularly low-resource regions. The guideline includes over 20 recommendations covering folic acid and iron supplementation, with specific adjustments for malaria-endemic areas to account for unique regional health challenges; management of sickle cell crises and effective pain relief strategies to alleviate suffering; prevention of infections and blood clots to reduce life-threatening complications; use of prophylactic blood transfusions to stabilize maternal health; and additional monitoring of both the woman’s and baby’s health throughout pregnancy to detect and address issues promptly.
The guideline places a strong emphasis on delivering respectful, individualised care that is adapted to each woman’s unique medical history, needs, and preferences, ensuring that treatment plans are both effective and empowering. It also explicitly addresses the significant challenge of stigma and discrimination faced by individuals with SCD in healthcare settings across several countries, which can deter women from seeking care and worsen health disparities. By promoting informed decision-making, the guideline encourages women with SCD to engage in early discussions with knowledgeable healthcare providers—ideally before pregnancy or early in gestation—to explore care options, make informed decisions about treatments to continue or adopt, and agree on strategies for managing potential complications. This proactive approach aims to optimise health outcomes for the woman, her pregnancy, and her baby.
Dr. Pascale Allotey, Director for Sexual and Reproductive Health and Research at WHO and the United Nations’ Special Programme for Human Reproduction (HRP), underscored the guideline’s transformative potential: “With quality health care, women with inherited blood disorders like sickle cell disease can have safe and healthy pregnancies and births. This new guideline aims to improve pregnancy outcomes for those affected. With sickle cell on the rise, more investment is urgently needed to expand access to evidence-based treatments during pregnancy as well as diagnosis and information about this neglected disease.” Dr. Doris Chou, Medical Officer and lead author of the guideline, further emphasised the importance of early and informed engagement: “It’s essential that women with sickle cell disease can discuss their care options early in pregnancy—or ideally before—with knowledgeable providers. This supports informed decisions about any treatment options to continue or adopt, as well as agree on ways of handling potential complications, so as to optimise outcomes for the woman, her pregnancy, and her baby.”
The complex nature of SCD necessitates a multidisciplinary care team to provide comprehensive reproductive and newborn health services. The guideline highlights the critical role of skilled and knowledgeable personnel, including haematologists for specialised blood disorder management, midwives for holistic maternal care, paediatricians for newborn health, and obstetrician-gynaecologists for pregnancy-related expertise. This collaborative approach ensures that all aspects of care are addressed, from routine monitoring to emergency interventions, to support the best possible outcomes.
Despite its growing global prevalence, sickle cell disease remains a significantly under-funded and under-researched health condition, contributing to its status as a neglected disease. The guideline calls for urgent research into the safety and efficacy of SCD treatments specifically for pregnant and breastfeeding women, populations that have historically been excluded from clinical trials, leaving substantial gaps in evidence-based care. This lack of data has hindered effective management during pregnancy, a challenge the WHO aims to address through this guideline and future research initiatives. The publication marks the first in a new WHO series focused on managing noncommunicable diseases in pregnancy, with future guidelines planned to address cardiovascular conditions, diabetes, respiratory diseases, mental health disorders, and substance use. This series reflects the increasing recognition of chronic diseases as major contributors to maternal and newborn mortality and morbidity, underscoring the need for targeted interventions to address these growing health burdens.
The WHO’s guideline represents a clarion call for increased investment in SCD diagnosis, treatment, and public awareness, particularly in regions with high prevalence where resources are often scarce. By providing a robust, evidence-based framework for managing SCD in pregnancy, the WHO stated it seeks to reduce maternal and newborn mortality, improve health outcomes, and address systemic inequities that have long perpetuated disparities in care. This pioneering guidance empowers healthcare systems to deliver dignified, safe, and effective care, offering women with SCD the opportunity to navigate pregnancy with confidence and hope for a healthy future for themselves and their babies.
– global bihari bureau
