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.
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
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