RICHMOND, Va. (Sept. 20, 2021) — Sickle cell disease causes $1.5 billion in lost wages and productivity each year in the U.S. alone, according to the first study of its kind.
That comes to more than $650,000 lost over the average working life of a person living with the painful genetic disorder.
Lead researcher David Holdford, Ph.D., a professor of pharmacoeconomics in the Virginia Commonwealth University School of Pharmacy , called the results “shocking.”
The peer-reviewed study , titled “Indirect Economic Burden of Sickle Cell Disease” and published in the August edition of the journal Value in Health , is the first attempt to quantify the financial impact of sickle cell on individuals and families.
Holdford and collaborators surveyed patients at a sickle cell clinic for adults at VCU Health. They found that sickle cell disease has profound effects on the work, productivity and daily lives of adults with the disorder.
“Too many people are not aware of how severe this disease can be and how it can affect lives, work and income,” Holdford said. “What we have demonstrated is that sickle cell is not only an important medical problem, it’s an economic one. Unfortunately, this will continue until we have a cure.”
Holdford, who researches economic aspects of medications and health care, said he was startled by the amount of pain the respondents suffered and the effect it had on almost every aspect of their lives.
“The number of pain events and the overwhelming impact they had — to me, that was shocking,” Holdford said.
In the study, 97% of respondents reported severe, debilitating painful attacks from sickle cell. Many reported suffering hundreds of such pain events every year.
Sickle cell disease, a genetic disorder that distorts red blood cells so they clump together, is characterized by sudden, unpredictable attacks of agonizing pain. It affects about 100,000 people in the United States and is most common in people of African, Mediterranean and Middle Eastern descent — about 1 in 365 Black or African American babies is born with sickle cell disease. There is no cure, though stem-cell therapy has shown promise.
Current treatments can moderate symptoms to some degree but none eliminates the painful attacks. Recently, researchers at VCU have begun trials on a promising medication based on aromatic aldehydes . Team members have decades of experience working with sickle cell patients through VCU Health’s adult sickle cell medical home and pediatric and adult sickle cell programs , which together serve more than 950 patients. In 1972, VCU became one of the first 19 institutions in the U.S. to be awarded federal funding for a sickle cell disease outreach program .
In the study, Holdford and collaborators — including Shirley Johnson, VCU sickle cell research operations manager and patient navigator supervisor, and Wally Smith , M.D., the Florence Neal Cooper Smith Professor of Sickle Cell Disease at the VCU School of Medicine and medical director of the adult sickle cell program at VCU Health — surveyed 192 patients at the sickle cell clinic for adults at VCU Health. The clinic sees more than 650 adults with sickle cell from across the Southeast. In calculating financial impact, the researchers used Virginia’s mean hourly wage of $25.53 per hour.
Among the findings:
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About VCU and VCU Health
Virginia Commonwealth University is a major, urban public research university with national and international rankings in sponsored research. Located in downtown Richmond, VCU enrolls nearly 30,000 students in 238 degree and certificate programs in the arts, sciences and humanities. Twenty-three of the programs are unique in Virginia, many of them crossing the disciplines of VCU’s 11 schools and three colleges. The VCU Health brand represents the VCU health sciences academic programs, the VCU Massey Cancer Center and the VCU Health System, which comprises VCU Medical Center (the only academic medical center in the region), Community Memorial Hospital, Tappahannock Hospital, Children’s Hospital of Richmond at VCU, and MCV Physicians. The clinical enterprise includes a collaboration with Sheltering Arms Institute for physical rehabilitation services. For more, please visit vcu.edu and vcuhealth.org .
Value in Health
Survey
People
Indirect Economic Burden of Sickle Cell Disease
6-Aug-2021
Dr Holdford reported receiving grants from Pfizer Inc during the conduct of this study and being a stockholder in Johnson & Johnson outside the submitted work. Dr Vendetti is employed by and a stockholder of Pfizer Inc outside the submitted work. Mrs Johnson reported receiving personal fees from Novartis, the American Society of Hematology, and the Foundation for Sickle Cell Disease Research during the conduct of this study. Dr Smith reported being a consultant for Pfizer outside the submitted work and receiving funding from the National Heart, Lung, and Blood Institute, grant R18 HL 112737 from the National Institutes of Health, and the Sickle Cell Disease Treatment Demonstration Program Regional Collaborative for the North East Region under PT110839 outside the submitted work. No other disclosures were reported.