On June 19, 2025, World Sickle Cell Awareness Day, the World Health Organization (WHO) released a powerful statement highlighting a 40% increase in sickle cell disease (SCD) cases globally since 2000, now affecting approximately 7.7 million people worldwide. This inherited blood disorder, characterized by abnormally shaped red blood cells, poses significant health challenges, particularly for pregnant women. The WHO’s first-ever global guideline on managing SCD during pregnancy underscores the critical need for enhanced maternity care and research to ensure safer pregnancies and better outcomes for both mothers and babies. This blog post dives into the realities of SCD, its impact on pregnancy, and the urgent call for awareness, research, and improved care. Let’s explore how we can advocate for those affected and drive meaningful change.
Understanding Sickle Cell Disease
Sickle cell disease is a group of inherited blood disorders caused by a genetic mutation in the hemoglobin gene, leading to crescent-shaped red blood cells. These rigid cells can obstruct blood flow, causing severe pain (known as pain crises), anemia, infections, and organ damage. SCD is most prevalent in malaria-endemic regions, with sub-Saharan Africa accounting for roughly 80% of cases, followed by parts of the Middle East, South Asia, and the Caribbean. Due to population migration and improved life expectancy, SCD is increasingly seen in non-endemic regions, making global awareness and education vital.
The WHO reports that SCD causes over 375,000 deaths annually, with a 41.4% rise in prevalence from 5.46 million in 2000 to 7.74 million in 2021. This growth, driven by population increases in high-prevalence areas and better survival rates, highlights the need for robust healthcare systems to manage this condition effectively. For pregnant women, SCD presents unique challenges, amplifying risks for both maternal and fetal health.
The Impact of Sickle Cell Disease on Pregnancy
Pregnancy in women with SCD is considered high-risk due to the physiological changes that exacerbate the condition. The WHO notes that women with SCD face a 4-to-11-fold higher risk of maternal death compared to those without the disease. They are also more likely to experience complications such as pre-eclampsia, venous thromboembolism, infections, and preterm labor. Babies born to mothers with SCD are at increased risk of stillbirth, preterm birth, and being small for gestational age.
The hypercoagulable state of pregnancy, combined with SCD’s tendency to cause vaso-occlusive crises (VOCs), increases the likelihood of life-threatening complications like acute chest syndrome and blood clots. Chronic organ damage, such as renal disease or pulmonary hypertension, further complicates pregnancy outcomes. Despite these risks, with proper care, women with SCD can achieve safe pregnancies. The key lies in preconception counseling, multidisciplinary care, and evidence-based interventions tailored to individual needs.
WHO’s Global Guideline: A Step Forward
On June 19, 2025, the WHO released its first global guideline for managing SCD during pregnancy, a landmark step toward addressing maternal health disparities. This guideline provides evidence-based recommendations for both high- and low-resource settings, emphasizing the importance of:
- Multidisciplinary Care: Pregnant women with SCD require a team of specialists, including hematologists, obstetricians, midwives, and pediatricians, to manage their complex needs.
- Preconception and Prenatal Counseling: Early discussions about care options, genetic risks, and treatment plans can optimize outcomes. Genetic counseling is crucial for couples at risk of passing SCD to their children.
- Prophylactic Interventions: Recommendations include aspirin to prevent pre-eclampsia, folic acid and iron supplements (adjusted for malaria-endemic areas), and, in some cases, prophylactic blood transfusions to reduce complications.
- Pain and Crisis Management: Strategies to manage VOCs and pain crises are critical, as these can worsen during pregnancy.
- Research Advocacy: The guideline highlights the lack of clinical research on SCD treatments for pregnant and breastfeeding women, calling for urgent investment to address this gap.
Dr. Pascale Allotey, Director for Sexual and Reproductive Health and Research at WHO, emphasized, “With quality health care, women with inherited blood disorders like sickle cell disease can have safe and healthy pregnancies and births.” This guideline marks the beginning of a broader WHO initiative to address noncommunicable diseases in pregnancy, with future guidelines planned for conditions like diabetes and cardiovascular disease.
Raising Awareness: Why It Matters
World Sickle Cell Awareness Day, observed annually on June 19, serves as a global platform to educate communities, healthcare providers, and policymakers about SCD. Despite its prevalence, SCD remains underfunded and under-researched compared to other chronic conditions. In the United States, for example, SCD affects about 100,000 people, predominantly African Americans, yet it receives less federal funding per patient than comparable diseases. This disparity underscores the need for advocacy to ensure equitable access to care and research.
Awareness campaigns can:
- Educate Healthcare Providers: As SCD becomes more prevalent globally, maternity care providers need training to recognize and manage the condition effectively.
- Empower Patients: Educating individuals with SCD about preconception planning, prenatal care, and available treatments can improve health outcomes.
- Drive Policy Change: Increased awareness can lead to greater funding for SCD research, comprehensive care centers, and neonatal screening programs.
Strategies for Safe Pregnancies in SCD
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Managing SCD during pregnancy requires a comprehensive approach. Here are key strategies based on the WHO guideline and other expert recommendations:
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Preconception Counseling
Women with SCD should engage in preconception counseling to assess their health status, review medications, and discuss genetic risks. For example, hydroxyurea, a common SCD treatment, may need to be discontinued before conception due to potential fetal risks, though recent studies suggest it may be safe up to conception. Couples should also undergo genetic screening to understand the likelihood of passing SCD or sickle cell trait to their child DEFINITION System.
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Multidisciplinary Care
A team of specialists, including a hematologist and maternal-fetal medicine expert, should monitor the pregnancy closely. Regular ultrasounds, blood tests, and fetal monitoring can detect complications early.
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Prophylactic Interventions
Prophylactic transfusions may be recommended for women with severe anemia or frequent crises to maintain hemoglobin levels and reduce complications. Low-dose aspirin (between weeks 12 and 36) can help prevent pre-eclampsia.
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Pain and Crisis Management
VOCs and pain crises require prompt management, often with hydration, pain relief, and, in severe cases, transfusions. Protocols should be individualized to address each patient’s needs.
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Postpartum Care
The postpartum period carries risks of complications like infections and thromboembolism. Close monitoring and thromboprophylaxis (e.g., low-molecular-weight heparin) may be necessary.
The Need for Research
The WHO guideline underscores a critical gap: pregnant and breastfeeding women are often excluded from clinical trials, leaving limited data on the safety and efficacy of SCD treatments during pregnancy. For instance, while prophylactic transfusions have shown benefits in reducing maternal and fetal complications, large-scale randomized trials are lacking. Similarly, the safety of newer therapies like voxelotor and crizanlizumab in pregnancy remains understudied. Increased funding for prospective, randomized studies is essential to develop evidence-based protocols that can save lives.
How You Can Support SCD Awareness
Raising awareness and supporting those with SCD can take many forms:
- Share Knowledge: Use social media to share facts about SCD and World Sickle Cell Awareness Day, using hashtags like #SickleCellAwareness or #WorldSickleCellDay.
- Advocate for Funding: Support organizations like the Sickle Cell Disease Association of America (SCDAA) by donating or participating in their events.
- Educate Your Community: Host local events or webinars to discuss SCD’s impact, especially in underserved communities.
- Support Policy Initiatives: Back policies that promote neonatal screening, comprehensive care centers, and equitable healthcare access.
External Links for Further Reading
- World Health Organization: Sickle Cell Disease in Pregnancy – WHO’s guideline announcement and key recommendations.
- National Heart, Lung, and Blood Institute: Sickle Cell Disease and Pregnancy – Insights into SCD’s impact on reproductive health.
- Sickle Cell Disease Association of America – Resources and advocacy for SCD awareness and support.
- March of Dimes: Sickle Cell Disease and Pregnancy – Practical advice for managing SCD during pregnancy.
- American Society of Hematology: SCD in Pregnancy – Expert guidance on managing SCD complications.
Sickle cell disease is a growing global health challenge, with 7.7 million people affected and a 40% increase in cases since 2000. For pregnant women with SCD, the risks are significant, but with quality care, safe pregnancies are possible. The WHO’s new guideline is a critical step toward standardizing care and improving outcomes, but more research and awareness are needed to address this neglected condition. By spreading knowledge, supporting research, and advocating for equitable care, we can empower those with SCD to live healthier lives and achieve safer pregnancies. This World Sickle Cell Awareness Day, let’s commit to making a difference—one step, one voice, one life at a time.
