WHO Issues First Global Guidelines for Managing Sickle Cell Disease in Pregnancy

The World Health Organization (WHO) has released its first global guideline on managing sickle cell disease (SCD) during pregnancy, addressing a growing and often overlooked health crisis with life-threatening consequences for both mothers and babies.

SCD is a group of inherited blood disorders marked by crescent-shaped red blood cells that obstruct blood flow, leading to severe anaemia, intense pain, recurrent infections, and critical complications such as strokes, sepsis, and organ failure. The condition becomes significantly more dangerous during pregnancy due to increased demands on the body’s oxygen and nutrient supply.

Sickle Cell Disease
Image: Rare Disease Advisor

Women with SCD are 4 to 11 times more likely to die during pregnancy than those without the condition. They also face a higher risk of complications such as pre-eclampsia, while their babies are more likely to be stillborn or born prematurely or underweight.

“With quality healthcare, women with inherited blood disorders like SCD can have safe pregnancies and healthy births,” said Dr Pascale Allotey, WHO’s Director for Sexual and Reproductive Health and Research. “This guideline is a critical step in improving pregnancy outcomes for affected women, especially in low-resource settings.”

Currently, an estimated 7.7 million people live with SCD globally—a 40% rise since 2000. The disease causes over 375,000 deaths annually and is most prevalent in malaria-endemic regions, including sub-Saharan Africa, which accounts for 80% of cases, as well as parts of the Middle East, the Caribbean, and South Asia. Due to global migration and increased life expectancy, the sickle cell gene is spreading to other regions, making SCD management a growing global concern.

Until now, clinical protocols for managing SCD in pregnancy have been primarily based on evidence from high-income countries. WHO’s new guideline, however, provides over 20 evidence-based recommendations tailored to both high- and low-resource settings. These include:

  • Folic acid and iron supplementation, with modifications for malaria-prone areas
  • Management of sickle cell crises and safe pain relief
  • Infection and blood clot prevention
  • Use of prophylactic blood transfusions
  • Enhanced maternal and fetal monitoring throughout pregnancy

Importantly, the guideline emphasizes the need for respectful, personalized care based on each woman’s medical history and preferences. It also highlights the need to combat stigma and discrimination, which continue to affect people with SCD worldwide.

Dr Doris Chou, WHO Medical Officer and lead author of the guideline, stressed the value of early, informed discussions between pregnant women with SCD and knowledgeable healthcare providers. “This ensures timely, shared decisions about treatment plans and ways to manage potential complications,” she said.

Given the complexity of SCD, WHO advises that care teams include experts such as hematologists, midwives, obstetrician-gynecologists, and pediatricians trained in reproductive and newborn health.

SCD remains significantly under-researched and under-funded, despite its rising prevalence. The guideline also calls for urgent research into the safety and effectiveness of SCD treatments for pregnant and breastfeeding women, who have long been excluded from clinical trials.

This publication marks the first in WHO’s new series on managing non-communicable diseases during pregnancy, with future guidelines set to cover diabetes, cardiovascular disease, respiratory illness, mental health, and substance use.

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