Sickle Cell Disease In the Spotlight

March 7, 2017 by Kristin Hanson

Faculty in the Wilmer Eye institute and Division of Hematology make discoveries, share best practices in sickle cell research and treatment

Adrienne Scott, an assistant professor of ophthalmology at the Wilmer Eye Institute, recalls her former patient, Gail Campbell Woolley, as “a force to be reckoned with.” A decorated journalist and avid world traveler, Woolley persevered through the effects of sickle cell disease throughout her life. But in her final years, as sickle cell attacked her eyesight and eroded her pulmonary functions, Woolley turned that force toward helping other sickle cell patients.

A man and woman in leisure attire pose for a photo on a secluded beach during their vacation.
Howard and Gail Woolley

Before her death in 2015, Gail and her husband, Howard — a 1986 Master of Administrative Sciences alumnus of the Carey Business School — made a gift to support Scott’s research in sickle cell retinopathy. Howard Woolley later created the Gail Campbell Woolley Fund for Project ECHO to support Hopkins’ efforts to improve sickle cell patient care, carrying forward his late wife’s goals.

“Philanthropy in the sickle cell field can have a major impact on the lives of those living with the disease,” Howard Woolley says.

Sickle cell predominantly affects African Americans. By distorting a person’s normally round and flexible red blood cells into rigid, crescent-like shapes, sickle cell disease clogs small blood vessels and causes intense pain. These attacks, called crises, can last from a few hours to several days and require powerful painkillers. Doctors in medical centers such as Hopkins, which regularly see sickle cell patients, know how the disease presents in patients and why it requires immediate medication. But more remote facilities may not.

“When you don’t understand the patient’s need for heavy pain management, inherent biases can come to light,” Woolley says, recalling his many emergency room visits with Gail. “It’s not uncommon for doctors unfamiliar with sickle cell to believe that a patient is just looking for drugs.”

“We can have the greatest therapies and protocols in the world, but if patients don’t have access to them where they live, it doesn’t make a difference. This is an area where Mr. Woolley is really helping our efforts.”

Sophie Lanzkron Director, Johns Hopkins Sickle Cell Center for Adults

That’s a situation that Sophie Lanzkron, director of Hopkins’ Sickle Cell Center for Adults, is addressing with support from the Gail Campbell Woolley Fund for Project ECHO. The center is a sickle cell hub for Project ECHO (Extension of Community Outcomes), which connects academic hospitals with certain diseases to medical centers worldwide via videoconference.

“We can have the greatest therapies and protocols in the world, but if patients don’t have access to them where they live, it doesn’t make a difference,” Lanzkron says. “This is an area where Mr. Woolley is really helping our efforts.”

Learn more about how the Project ECHO model enables Hopkins expertise to benefit patients as far away as Nevada and Antigua

A man wearing a suit and a woman wearing a white lab coat walk down a light-filled corridor, deep in conversation.
“Nobody with sickle cell disease should lose vision,” says Adrienne Scott (right), whose research about screening protocols has received a boost from gifts made by Howard Woolley (left).

But Woolley is also committed to advancing sickle cell therapies through his support for Scott, who performed Gail Woolley’s retina surgery. Scott’s current research focuses on how new technology and improved screening protocols can prevent vision loss through early diagnosis and treatment.

“Nobody with sickle cell disease should lose vision,” Scott says. “It’s up to us, as physicians, to put new protocols in place.”

Learn more about how Scott’s research may influence national screening guidelines for sickle cell retinopathy

Long before Gail Woolley became an official patient at Hopkins, the Woolleys were well aware of Hopkins’ historical contributions to sickle cell treatment — in particular, Robert Brodsky and his team’s pioneering work on the half-match bone marrow transplant procedure, which has reversed the sickle cell symptoms of many patients. As he learned more about other sickle cell initiatives in progress at Hopkins, Howard Woolley was confident his investment would benefit others — fulfilling one of his wife’s last, but most lasting, dreams.

Now, Woolley says, he’s looking for partners.

“In my ideal world, we’d have more individuals like me, who have had successful careers and have the resources to make an impact, and we’d come together. In partnership with Hopkins, we should be able to find more philanthropists in this area,” Woolley says. “I would encourage anyone out there to jump in — there is plenty of room.”

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Interested in supporting Hopkins faculty who are working to advance the treatment of sickle cell disease?

Topics: Friends of Johns Hopkins Medicine, Johns Hopkins Medicine, Fuel Discovery, Promote and Protect Health