Editorial | Harnessing Jamaica’s legacy in sickle cell disease treatment

A too-little-known or appreciated fact is that Jamaica is among the world’s leaders in research and understanding and treatment of sickle cell disease.

Indeed, people in Jamaica who have sickle cell, a disease that primarily affects black populations. According to the medical journal Lanclet, the Caribbean has the highest incidence of the disease outside of west Africa.

Sickle cell is a genetic disorder of red blood cells, where persons get abnormal genes from both parents. This results in their red blood cells changing from a soft, disc-shaped cell to a rigid, sticky sickle-shaped cell. 

Bone pain is the commonest symptom, experienced by over 90 per cent of people with sickle-cell disease (SCD). “Pain crises typically start as acute, sporadic episodes, each lasting anywhere from several days to two weeks,” explained Dr Lesley King the head of clinical services, Caribbean Institute for Health Research, UWI, in a February opinion article in this newspaper. 

“These episodes are often unpredictable and might occur without an obvious trigger. Known precipitants include extremes of weather, especially cold and rainy conditions, along with dehydration, stressors like exams or grief, and infection.

“Pain may be considered a silent epidemic,” Dr King wrote. “… To the observer, doubt often creeps in because pain is intangible: we cannot see it, touch it or measure it. As a result, its very existence is sometimes questioned.”

The work by people like Dr King builds on a near seven-decade-old foundation established by the late Graham Serjeant, the Britain-born physician who came to Jamaica in 1966 and devoted almost six decades to studying a disease that affects thousands of Jamaicans and millions globally. 

Through his work at the Sickle Cell Unit at the University of the West Indies and later, the Sickle Cell Trust, Professor Serjeant overturned conventional wisdom that children born with the disease rarely survived into adulthood. His research demonstrated that with early diagnosis, proper care, and close monitoring, patients could lead longer and healthier lives. 

His pioneering Jamaican cohort study, launched in the 1970s, screened approximately 100,000 newborns and followed more than 500 patients over decades. That work became one of the world's most important longitudinal studies on sickle cell disease and helped shape treatment protocols used internationally. 

Yet despite that progress, sickle cell disease remains a major public-health challenge in Jamaica and the region. The United States Food and Drug Administration in December 2023 approved Casgevy, for patients aged 12 years and over, which works by taking a patient’s blood stem cells, editing them in the laboratory to reactivate healthy haemoglobin production, and then reinfusing them into the body after chemotherapy. If successful, the patient begins producing functional red blood cells. 

Casgevy, though, carries a hefty price tag: it costs around US$2.2 million in the United States.

According to the Sickle Cell Unit, approximately one in every 150 babies born in Jamaica has sickle cell disease, while about one in 10 Jamaicans carries the sickle cell trait. It is estimated that there are 18,000 people living with SCD in Jamaica.

The unit remains the only comprehensive sickle cell centre in the English-speaking Caribbean and provides care to roughly 3,000 patients each year, accounting for about 9,000 health visits annually. It also screens more than half of all babies born in Jamaica each year. Preventive care and early intervention remain essential in reducing complications and improving quality of life. 

Globally, the World Health Organization estimates that more than 300,000 babies are born annually with major haemoglobin disorders, with sickle cell disease accounting for the majority. By 2050, that number could exceed 400,000 births each year based on the estimates of national SCD frequencies and data on projected birth rates. A US-based National Library of Medicine study said that “the global burden of SCD is increasing and highlights the need to develop specific national policies for appropriate public health planning, particularly in low- and middle-income countries”.

In Jamaica, disruptions in healthcare caused by Hurricane Melissa last October have presented additional challenges. Difficulty in accessing medication access and support systems have increased the risk of complications, morbidity, and even death.

“While chronic conditions, such as diabetes and hypertension, are widely recognised and frequently prioritised in disaster-response efforts, we must not forget those living with SCD. Their needs are equally urgent and deserve deliberate attention in all phases of disaster preparedness, response, and recovery,” wrote Prof Monica Asnani and Dr King in a co-authored article in November 2025 in this newspaper. 

Given the African ancestry of a high proportion of Caribbean populations and the high prevalence of the sickle cell trait in the region, the disease deserves far greater policy attention than it often receives.

Jamaica has demonstrated what can be achieved through research, education, and community engagement. But there are still gaps.

Public understanding remains uneven. Many people continue to discover their genetic status only after the birth of a child with the disease. Genetic counselling services remain limited. Access to specialist care outside of Kingston remains constrained despite outreach clinics. New therapies, including gene-editing treatments that have shown promise abroad, are prohibitively expensive and beyond the reach of most patients.

Professor Serjeant transformed how the world understands sickle cell disease. His life's work proved that science, compassion, and persistence can change outcomes once thought inevitable. 

His work established Jamaica as a global leader in sickle cell research. That legacy deserves to be protected.