Kingston, Jamaica, at sunset. CSL Behring’s Jens Oltrogge visited the University of West Indies campus in Kingston to meet with patients and physicians at the Sickle Cell Unit of the Caribbean Institute for Health Research. (Photo/Jens Oltrogge)
Set between the foothills of Jamaica’s famed Blue Mountains and the swirling turquoise of the Caribbean Sea, the palm tree-dotted campus of the University of West Indies is an ideal place for learning. But as I found out during a recent visit to the university’s Caribbean Institute for Health Research, it also serves as one of the front lines in the fight against a significant health issue in this island nation: sickle cell disease.
The disease affects a person’s red blood cells. Those cells are typically round, but in people with this condition, some of them change into the shape of a banana or a sickle, the curved farming tool from which the disease takes its name. Sickle cells are stiff and sticky and cause pain and swelling by blocking the circulation of blood. Sickle cells die off much faster than regular blood cells, which can leave patients with fatigue and shortness of breath. The condition can lead to kidney disease and strokes.
The disease primarily affects people of African descent and is caused by an inherited gene that the Sickle Cell Foundation of Jamaica says can be found in some 270,000 people on the island or about 10 percent of the country’s population. A child of parents who each have one defected gene has a 25 percent chance of inheriting the disease. The Foundation says one out of every 150 babies born in Jamaica is suffering from sickle cell disease. Compare that to the United States, where government statistics show only one in 365 African-American babies is born with the disease.
The numbers are what make the Sickle Cell Unit at the Caribbean Institute for Health Research so crucial to Jamaica and beyond. With about 5,000 patients, it’s one of the largest such clinics in the world and the only comprehensive facility specifically for people with sickle cell in the English-speaking Caribbean.
I came to the clinic in the capital city of Kingston on a warm January day to see for myself what the lifelong struggle with sickle cell disease looks like for health care providers and patients.
Dr. Monika Asnani, Professor Jennifer Knight-Madden, Dr. Lesley King and CSL Behring Head of Global Commercial Development Hematology Jens Oltrogge (right) at the Sickle Cell Unit at the Caribbean Institute for Health Research at the University of the West Indies in Kingston, Jamaica.
Dr. Lesley King heads the clinical service at the unit. Among her patients is a toddler boy who just had his spleen removed to ease the toll the condition takes on the body and the pain that comes with it. After speaking with his parents, I had a better sense of the scope of the problem. Neither of them knew they were a carrier of the sickle cell gene prior to their son’s birth.
A 35-year-old man took time away from his treatment to tell me how he learned to cope. He had trouble holding down a job because of his frequent hospitalizations. His solution was to work for himself so he could focus on his professional goals while paying close attention to his health.
The challenges seem daunting, and they are. But the Sickle Cell Unit can give patients something more than medication and treatment; it offers hope. The oldest patient at the facility is a 90-year-old man who shows others how a normal life is possible with sickle cell disease.
More hope can be found in the steps Jamaica is taking to get a better handle on the disease. Newborn screening for the condition had been limited to a few hospitals, but has been implemented nationwide in recent years.
Experts across the globe, including some of my colleagues at CSL, are working on leading-edge gene therapy treatments for the condition that offer once-unimaginable possibilities.
Still, the battle against the pain and fatigue remains a daily one at this clinic, where doctors work hand-in-hand with patients in an effort to extend lives and make them better.
Jens Oltrogge, Ph.D., is Head of Global Commercial Development Hematology at CSL Behring.