Sophie Lanzkron, an associate professor of medicine and oncology, knows that complications of sickle cell disease, such as renal failure or heart damage, are treatable, and in many cases preventable. The problem: These complications aren’t detected early enough because sickle cell patients can have such uncomfortable experiences within the health care system, they avoid it altogether.
“Patients would tell me the same story,” she recalls. “I’d ask, ‘Do you have a primary care physician?’ They’d say, ‘Why bother? They don’t know anything about sickle cell. And when I went to the [emergency department], they treated me like I was a drug addict.'”
Gail Woolley experienced similar episodes in care before she died of complications from sickle cell in 2015. The Gail Campbell Woolley Fund for Project ECHO, established by her husband, Howard, will support Hopkins’ efforts to educate and consult with medical professionals around the world to improve the quality of care for patients, especially in areas where expertise in the disease is scarce.
“Patients would tell me the same story. I’d ask, ‘Do you have a primary care physician?’ They’d say, ‘Why bother? They don’t know anything about sickle cell. And when I went to the [emergency department], they treated me like I was a drug addict.'”
Sophie Lanzkron Director, Johns Hopkins Sickle Cell Center for Adults
The Sickle Cell Center for Adults, which Lanzkron directs, is a sickle cell “hub” within a global association called Project ECHO (Extension of Community Outcomes). Established by a New Mexico hepatologist in 2003, Project ECHO makes specialized knowledge accessible through a “wheel” model. Physicians, nurses, and community health workers (the “spokes”) connect with faculty in academic medical centers (the “hubs”) through weekly virtual clinics and discussions.
Lanzkron’s team is already working with several clinics, including one in Nevada and another in Antigua. The biggest challenge now is growing the network by traveling to meet with prospective partners. Woolley’s funding will help support that effort, as well as analysis of data on how the program is affecting patient outcomes.
“We’re looking to show how teaching providers to better treat patients in the outpatient setting will decrease the admission and readmission of sickle cell patients to hospitals,” Lanzkron says.
Interested in supporting Hopkins faculty who are working to advance the treatment of sickle cell disease?
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