Here’s the good news: scientific advances are helping people with sickle cell disease live longer, more productive lives. From hydroxyurea, a U.S. Food and Drug Administration-approved drug that has been shown to boost survival and reduce pain, to experimental bone marrow transplants that have saved lives, the tally of promising discoveries continues to grow.
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But here’s the troubling part: many people—particularly teens and adults with the disease —are still unable to access consistent, high quality health care. The results are often health complications such as severe pain and stroke as well as high rates of death. Two critical questions are worth asking. Why is access to care suboptimal for many teens and adults with sickle cell, and what can be done about it?
To help answer these and other questions, the National Heart, Lung, and Blood Institute (NHLBI) recently awarded a total of nearly $36 million in grants to eight clinical sites across the country as part of the Sickle Cell Disease Implementation Consortium (SCDIC) project. The grants are planned for six-year project periods. In addition, approximately $6 million was awarded to a SCDIC Data Coordinating Center. The Center, also planned for a six-year period, will support the research efforts of the SCDIC.
The grants are the first of their kind explicitly dedicated to exploring new strategies for getting quality care to teens and adults with the disease while also analyzing the effectiveness of those strategies. The project includes funding and support from the National Institute on Minority Health and Health Disparities (NIMHD). NHLBI and NIMHD are part of the National Institutes of Health.
While children in the United States with sickle cell disease can now expect to survive to adulthood due in part to continuous, quality care, the transition into adult care remains challenging. Researchers are already familiar with some of the barriers to quality care among adolescents and adults with sickle cell disease.
Those barriers include patients’ frequent use of emergency rooms instead of clinics; poor follow-up after discharge from hospitalization; difficulty accessing primary care and specialty care, particularly hematologists; and limited access to hydroxyurea. In addition, many physicians do not adhere to guidelines for best practices for managing sickle cell disease.
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The new grants will be used to address barriers to quality care. The eight clinical sites will collaborate to develop care strategies that are appropriate for their respective communities, which include urban, suburban, and rural settings. Possible options include strategies to boost access to regular health care, increase access to hematologists, improve pain management, and enhance medical training among physicians and other caregivers.
Some sites might also explore innovative strategies, including a new text message application that could help improve adherence to hydroxyurea, as well as neurocognitive (brain-related) screening and educational interventions to boost the wellbeing of patients. The researchers hope the study will lead to more effective evidence-based guidelines for the implementation of sickle cell care and ultimately help save lives in this at-risk population.
The following are SCDIC grant recipients:
The SCDIC Data Coordinating Center is:
NHLBI is committed to sickle cell disease research, including closing the gaps that limit patient access to quality care. Dr. Gary H. Gibbons, director of NHLBI, believes that by continuing to tap into the vast world of scientific possibility, we will be able to witness a generation of children with sickle cell disease who live without fear of suffering a stroke – a stroke-free generation. NHLBI is excited to be working to turn that vision into reality. To learn more about sickle cell disease, visit NHLBI’s website.
George Mensah, M.D., is director of the Center for Translation Research and Implementation Science (CTRIS) at NHLBI.
W. Keith Hoots, M.D., is director of the Division of Blood Diseases and Resources at NHLBI.
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