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Kwaku Ohene-Frempong, Expert in Sickle Cell Disease, Dies at 76

When his baby boy was diagnosed with the illness, he made it his mission to combat it. He later took his expertise back to his native Ghana.

Soon after his first child, Kwame, was born on May 13, 1972, Dr. Kwaku Ohene-Frempong discovered that the boy had a fatal genetic disease.

“I was holding Kwame, and he came upstairs with tears in his eyes,” his wife, Janet Ohene-Frempong, said in an interview, recalling the moment her husband broke the news. “He said, ‘Our son, Kwame, has sickle cell disease. He knew what that meant.” Sickle-cell can result in searing pain, organ damage, strokes, susceptibility to infections and premature death.

Dr. Ohene-Frempong, a medical student at Yale at the time, then called his mother at their family home in Ghana. “God is telling you something,” she told him. The message, she said, was to use his medical training to help combat the disease. And that is what he did “until he drew his last breath,” Ms. Ohene-Frempong said.

“The most important thing that happened to us is Kwame’s birth,” she added. “It changed the trajectory of our lives and of hundreds and hundreds of people around the world. All the work he did — every bit of it — he did because of Kwame.”

Dr. Ohene-Frempong, familiarly known by his initials, Kof (pronounced cough), died on May 7 in Philadelphia. He was 76. The cause was metastatic lung cancer, his wife said.

Dr. Ohene-Frempong worked for decades at the Children’s Hospital of Philadelphia, part of the University of Pennsylvania. At CHOP, as it is known, he established its Comprehensive Sickle Cell Center.

Dr. Alexis Thompson, a colleague and sickle cell expert there, said in an interview: “I relied on his wisdom at almost every turn in my career. Part of it was watching with this tremendous awe what his vision was and the things he thought to do to move this field forward.”

Dr. Ohene-Frempong was a leader of a large, federally-funded study, the Cooperative Study of Sickle Cell Disease, that helped answer an important question: What is the natural course of the disease?

Analyzing the study’s data, he found that the disease could result in blockages in blood vessels in the brain, leading to a high rate of strokes in children with sickle cell. That led other researchers to be able to predict which children were most at risk and to discover that regular transfusions could prevent most strokes in those children.

In his native Ghana, Dr. Ohene-Frempong established a pilot program to provide screening for sickle cell disease among newborns in the southern city of Kumasi. It was the first such program in sub-Saharan Africa. In addition to identifying children with the illness, the program referred them to specialized clinics that provided treatments like antibiotics to prevent infections, routine immunizations and a drug, hydroxyurea, that can reduce the risk of complications from sickle cell.

Kwaku Ohene-Fremong was born on March 13, 1946, in Kukurantumi, in eastern Ghana, to Kwasi Adde Ohene and Adwoa Idi Boafu. His father was a cocoa farmer and a prominent member of a royal family.

Kwaku attended a boarding school, Prempeh College, then went to Yale University, where he majored in biology and was captain of the track and field team, setting indoor and outdoor records in the high hurdles. While a student, he met Janet Williams, who was attending Cornell University. They married on June 6, 1970, one week after they had both graduated.

Dr. Ohene-Frempong said in an interview in 2019 that he first found out about sickle cell when he and some friends attended a lecture about the disease at Yale. As he sat listening, he said, he suddenly recognized the disease: It was in his family but had gone undiagnosed. One of his cousins had the symptoms and died at 14.

“He was in pain,” he said of his cousin. “His eyes were very yellow, and he was very skinny.”

Dr. Ohene-Frempong continued on to medical school at Yale, then went to New York Hospital Weill-Cornell Medical Center in Manhattan for his residency. He studied pediatric hematology at the Children’s Hospital of Philadelphia before moving to the Tulane University School of Medicine, where he was associate professor of pediatrics.

In his six years at Tulane, he established the Tulane Sickle Cell Center of Southern Louisiana, a medical care facility, and helped the state health department develop a newborn-screening program for the disease.

In 1986, Dr. Ohene-Frempong returned to Children’s Hospital and remained there for 30 years before leaving to work full time in Ghana, at the Kumasi Center for Sickle Cell Disease, a research and treatment center. He was still based there when he returned to Philadelphia for cancer treatment.

“He was very, very aware of the limitations of working in Africa,” Ms. Ohene-Frempong said. “His goal was to raise the standards of care. He said, ‘It can be done in America, and that is our goal here.'”

As part of that mission, Dr. Ohene-Frempong became president of the Sickle Cell Foundation of Ghana and the national coordinator for the American Society of Hematology’s Consortium on Newborn Screening in Africa.

His honors and accolades were many, including, from Ghana, the Order of the Volta in 2010 and the Millennium Excellence Award in Medicine in 2015. In the United States, in 2020, he received the Assistant Secretary of Health Exceptional Service Medal, the highest civilian award given by the Public Health Service, part of the Department of Health and Human Services. The American Society for Hematology honored him in 2021 with its Stratton Award for Translational and Clinical Science.

But despite the progress that Dr. Ohene-Frempong and others had made in caring for people with sickle cell disease, his son, Kwame, did not survive it: He died in 2013 at age 40, the father of two young children.

In addition to his wife, Dr. Ohene-Frempong is survived by his daughter, Afia Ohene-Frempong; three brothers, Kwabena Ohene-Dokyi, Kwasi Ohene-Owusu and Reynolds Twumasi; a sister, Ama Ohene- Agyeiwaa Boateng; a grandson; and a granddaughter.

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