WHO issues first global guideline for sickle cell disease management in pregnancy

SWITZERLAND—The World Health Organization (WHO) has issued its first-ever global guideline focused on managing sickle cell disease (SCD) during pregnancy, a critical health issue that poses serious risks to both mothers and their babies.

SCD is an inherited blood disorder where red blood cells take on a sickle or crescent shape, which can block blood flow and lead to severe anemia, intense pain episodes, infections, and life-threatening complications like strokes, sepsis, or organ failure.

Pregnancy intensifies these risks because the body requires more oxygen and nutrients.

Women with SCD are four to eleven times more likely to die during pregnancy compared to those without the disease.

They also face higher chances of complications such as pre-eclampsia, while their babies are at increased risk of stillbirth, premature birth, or low birth weight.

Dr. Pascale Allotey, WHO’s Director for Sexual and Reproductive Health and Research, emphasized that with quality healthcare, women with inherited blood disorders like SCD can have safe, healthy pregnancies and births.

The new guideline aims to improve pregnancy outcomes for affected women.

She also emphasised the urgent need for increased investment to expand access to evidence-based treatments, diagnosis, and information about this often-neglected disease.

Globally, about 7.7 million people live with SCD, a number that has risen by over 40% since 2000.

The disease is most common in malaria-endemic regions, especially sub-Saharan Africa, which accounts for roughly 80% of cases, as well as parts of the Middle East, the Caribbean, and South Asia.

Due to population movements and longer life expectancy, the sickle cell gene is spreading worldwide, increasing the need for maternity care providers everywhere to understand how to manage the disease.

Until now, clinical guidelines for managing SCD in pregnancy mainly came from high-income countries.

WHO’s new guideline fills this gap by offering evidence-based recommendations suitable for low- and middle-income countries, where most cases and deaths occur.

It includes over 20 recommendations covering folic acid and iron supplementation (with adjustments for malaria regions), management of sickle cell crises and pain relief, infection and blood clot prevention, use of prophylactic blood transfusions, and enhanced monitoring of both mother and baby throughout pregnancy.

Importantly, the guideline calls for respectful, individualized care tailored to each woman’s medical history, needs, and preferences.

It also highlights the need to combat stigma and discrimination in healthcare settings, which remains a significant barrier for many people with SCD worldwide.

Dr. Doris Chou, the guideline’s lead author, noted the importance of early discussions—ideally before pregnancy—between women with SCD and knowledgeable healthcare providers.

This allows informed decisions about treatment options and plans to manage potential complications, optimizing outcomes for mother and child.

Given the complexity of SCD, the guideline recommends involving a multidisciplinary care team, including hematologists, midwives, pediatricians, and obstetrician-gynecologists, to provide comprehensive care.

Despite its growing prevalence, SCD remains underfunded and under-researched.

While treatments are improving for the general population, the guideline stresses the urgent need for more research on the safety and effectiveness of SCD treatments specifically for pregnant and breastfeeding women, who have historically been excluded from clinical trials.

This guideline is the first in a new WHO series addressing noncommunicable diseases during pregnancy.

Future guidelines will focus on cardiovascular conditions, diabetes, respiratory diseases, mental health disorders, and substance use, recognizing the increasing impact of chronic diseases on maternal and newborn health worldwide.

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