The World Health Organisation (WHO) has today released its first-ever global guideline on the management of sickle cell disease (SCD) during pregnancy.
The guidelines are meant to address critical and growing health challenges that can have life-threatening consequences for both women and babies.
SCD is a group of inherited blood disorders characterized by abnormally shaped red blood cells that resemble crescents or sickles.
These cells can block blood flow, causing severe anaemia, episodes of severe pain, and recurrent infections, as well as medical emergencies like strokes, sepsis, or organ failures.
Health risks associated with SCD intensify during pregnancy due to heightened demands on the body’s oxygen and nutrient supply.
Women with SCD face a 4- to 11-fold higher likelihood of maternal death than those without. They are more likely to experience obstetric complications like pre-eclampsia, while their babies are at greater risk of stillbirth or being born early or small.
In Kenya, pregnant women with sickle cell disease (SCD) face significantly higher risks of adverse pregnancy outcomes and research published by the National Institutes of Health (NIH) indicates that the disease burden is substantial, with an estimated 14,000 children born annually with SCD in Kenya, contributing to both child and adult morbidity and mortality
Dr. Pascale Allotey, Director for Sexual and Reproductive Health and Research at WHO and the United Nations’ Special Programme for Human Reproduction (HRP), said that 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. Allotey said.
There are around 7.7 million people living with SCD worldwide, a figure that has increased by over 40 percent since 2000.
SCD is estimated to cause over 375,000 deaths each year, and the disease is most prevalent in malaria-endemic regions, particularly sub-Saharan Africa, which accounts for around 8 in 10 cases, as well as parts of the Middle East, the Caribbean, and South Asia.
With population movements and improvements in life expectancy, the sickle cell gene is also becoming more widespread globally, meaning more maternity care providers need to know how to manage the disease.
Until now, clinical guidance for managing SCD in pregnancy has largely drawn on protocols from high-income countries.
WHO’s new guideline aims to provide evidence-based recommendations that are also relevant for low- and middle-income settings, where most cases and deaths from the disease occur. Accordingly, the guideline includes over 20 recommendations.
Dr Doris Chou, Medical Officer and lead author of the guideline, says that it is essential that women with sickle cell disease 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 optimize outcomes for the woman, her pregnancy, and her baby.” Dr Chou noted
SCD is a neglected health condition that remains considerably underfunded and under-researched, despite its growing prevalence worldwide, and although treatment options are improving for the general population, the guideline underscores the urgent need for more research into the safety and efficacy of SCD treatments for pregnant and breastfeeding women, populations that have historically been excluded from clinical trials.
By Wangari Ndirangu
