Closing the Gaps: NIH Grants Aim To Reduce Barriers To Quality Care Among Teens, Adults With Sickle Cell

African American girl sitting outsideHere’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.