The Global Burden of Sickle Cell Disease:
SCD is most prevalent in sub-Saharan Africa and Southeast Asia, with an estimated 85% of SCD births occurring in these regions(1). In the United States, SCD predominantly affects individuals of African or African-American descent, occurring in approximately one out of every 365 births in this population(2).
A recent study shows that despite advancements in standard care, individuals with SCD in developed countries still have a significantly lower life expectancy compared to the general population(3).
In North America and Europe, the average life expectancy ranges from 40 to 60 years, which is 20-30 years lower than the general population(3–6). In Africa, SCD has a devastating impact, with the majority of children born with SCD not surviving beyond the age of five(7). Limited access to diagnostic tests, treatment options, and comprehensive care contributes to the high mortality rates in these regions(8).
Patients living with SCD often experience chronic pain, fatigue, anaemia, and organ damage, impacting their daily lives and overall well-being(1). Sickle cell disease (SCD) patients often require frequent hospitalizations due to various factors related to the nature of the disease. Common reasons why individuals with SCD may need regular hospital care includes, Pain Crises due to Vaso occlusive events, Acute Chest Syndrome (ACS), Infections, needing blood transfusions due to anaemia, Stroke and Neurological Complications and other organ complications(1).
The unpredictable nature of the disease and the need for frequent hospitalizations add to the physical and emotional burden on patients. Historically, SCD has received low priority, leading to a lack of awareness among policymakers and the general public. Limited access to optimal diagnostic tests, treatment options, and comprehensive care exacerbates health outcomes for individuals with SCD.
Current treatment approaches for SCD focus on preventive measures, such as vaccinations, penicillin prophylaxis, and blood transfusions, to reduce complications(1). Palliative care, including pain management and supportive therapies, aims to alleviate symptoms and improve quality of life for individuals with SCD.
Promising advancements in gene therapies (GTx) offer hope for the future treatment of SCD(9). However, ensuring accessibility and affordability of these therapies, particularly in low- and middle-income countries, is crucial to address the disproportionate burden of the disease.
Raising awareness about SCD among policymakers, healthcare professionals, and the general public is essential to prioritize the disease and allocate resources accordingly. Advocacy efforts can help promote research, improve access to care, and address the social and economic challenges faced by individuals with SCD. Collaboration between high-income countries and low- and middle-income countries is vital to facilitate the delivery of effective treatments, including future gene therapies, to regions with the highest disease burden.
In summary, sickle cell disease (SCD) is a complex and debilitating disorder that affects millions of people worldwide. Prioritizing patients needs is a must. Addressing the global burden of SCD requires a comprehensive approach involving improved access to care, research advancements, and increased awareness.
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