New National Lecture Honors Late Director of UM’s Sickle Cell Center

The state’s Foundation for Sickle Cell Disease Research has honored the late Charles H. Pegelow, M.D., who directed the University of Miami Sickle Cell Center for more than two decades, by establishing an annual lecture at the 36th National Sickle Cell Disease Scientific Meeting. The lecture is named for the internationally recognized leader in the research and treatment of sickle cell disease.

The Miller School’s Ofelia Alvarez, M.D., professor of clinical pediatrics in the Division of Hematology/Oncology and Co-Director of the UM Sickle Cell Center, was selected to present the first Charles H. Pegelow, M.D., Lecture at the scientific meeting held in conjunction with the 7th Annual Sickle Cell Disease Research and Educational Symposium in Miami April 14-17.

Daniel Armstrong, Ph.D., professor and Executive Vice Chair of Pediatrics and Co-Director of the UM Sickle Cell Center, said the new lecture is a well-deserved tribute to a physician-scientist who dedicated his career at the Miller School to treating children with sickle cell disease. Introducing the lecture at the joint meeting held at the Intercontinental Hotel, Armstrong recounted his first encounter with the driving force behind the University’s Sickle Cell Program.

“If you think you are going to come to this division [pediatric hematology/oncology] and just take care of children with cancer, you may as well leave now,” Pegelow told the young Armstrong, who arrived in Miami in 1985 after completing his training. “If you decide to stay, I expect you to see at least one child with sickle cell for every three you see with cancer.”

Armstrong’s two-word response, “Just one?” was the foundation of their 17-year professional and personal friendship that endured until Pegelow’s untimely 2002 death at age 59.

“I was very fortunate to know this exceptional man and physician,” Armstrong said. “Dr. Charles Pegelow was a passionate physician and advocate for children with sickle cell disease, just as he was for residents in training. Honoring and remembering him with a named lecture at the National Sickle Cell Disease meeting was the ultimate right thing to do, and we are so proud that UM’s own Dr. Ofelia Alvarez, a passionate advocate for sickle cell disease in her own right, was selected to deliver the inaugural lecture. It was no coincidence that she selected a topic that was so close to Dr. Pegelow’s heart.”

For her presentation, “Improving Outcomes in Sickle Cell Anemia: Does My Patient Have to Die Young?” Alvarez reviewed national data on death certificates to confirm national mortality trends and the causes of death among individuals affected by sickle cell in the U.S. – a tribute to Pegelow and his unfinished work.

“In choosing a topic for the lecture, I considered that Dr. Pegelow was concerned about the quality of care in Florida and was involved at some point in investigating the causes of deaths among individuals affected by sickle cell in this state, though he never completed that work,” said Alvarez, who is also a member of the Foundation for Sickle Cell Disease Research’s Board of Directors. “Like him, I am also very concerned about the early mortality observed in patients with sickle cell anemia.”

Sickle cell disease or sickle cell anemia, a genetic blood disorder characterized by red blood cells that assume an abnormal sickled shape, prevents oxygen-rich blood from reaching vital tissues and organs, leading to organ damage, especially in the lungs, kidneys, spleen and brain. The condition usually affects people, or their descendants, from parts of tropical and sub-tropical sub-Saharan regions where malaria is or was common.

On average, sickle cell patients live 30 years less than the general population — a survival rate that has not significantly changed since 1994.

Emphasizing an increased mortality during transition years (age 20-24) from pediatric to adult care, Alvarez reported that mortality peaks between ages 30 and 40, and is usually from cardiovascular causes. Based on her findings, she also provided tips to improve outcomes, such as enhanced monitoring of patients for chronic organ damage with emphasis on cardiovascular risk prevention.

Alvarez’s findings will be published this year in Pediatric Blood & Cancer, the official journal of the American Society of Pediatric Hematology/Oncology and the International Society of Pediatric Oncology.

Sponsored by the Foundation for Sickle Cell Disease Research, the annual meeting was established by Lanetta Jordan, M.D., M.P.H., Foundation President and associate professor of public health sciences, to serve as a forum for the presentation, advancement and dissemination of scientific works in sickle cell disease. In 2015, the foundation will begin providing research grants to support its core mission to maximize quality of life and improve survival for sickle cell patients through innovative evidence-based research. At the symposium, it received its first research donation of $10,000 from BP Oil and Olympic gold medalist Sanya Richards-Ross.

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