New Coalition Targets Gaps in Sickle Cell Care, Treatment Efforts

By Krisberg, Kim | The Nation's Health, November-December 2016 | Go to article overview

New Coalition Targets Gaps in Sickle Cell Care, Treatment Efforts


Krisberg, Kim, The Nation's Health


WITH NEARLY 100,000 Americans affected by sickle cell disease and estimates that the chronic disorder will impact nearly 30 percent more people worldwide in the next 30 years, providers have joined together to identify gaps in care and priority areas for improvement.

To address the challenges, the American Society of Hematology in September launched the Sickle Cell Disease Coalition, of which APHA is a member, and released "State of Sickle Cell Disease: 2016 Report" to evaluate four priority areas: access to care, training and professional education, research and clinical trials, and global health.

The report found that while people with sickle cell disease are living longer, more is needed to ensure their quality of life. For example, the report found that despite universal screening for sickle cell in the U.S., one study found that long-term follow-up after diagnosis was not conducted in nearly one-third of cases.

While the mortality rate for sickle cell disease in children decreased 3 percent each year in a study from 1979 to 2005, the mortality rate for adults with the disease increased by 1 percent each year.

Sickle cell disease is a group of inherited red blood cell disorders that can cause a range of lifelong complications, including anemia, infections, stroke, tissue damage, organ failure, intense pain and premature death. Sickle cell disease affects about 1 in every 365 black births, with 1 in 13 black babies born with sickle cell trait.

"There are many unique challenges that people with SCD face," said Alexis Thompson, MD, MPH, vice president of the American Society of Hematology, in a news release. "For example, the transition from pediatric to adult care can be especially difficult, and many people struggle to find health care providers with comprehensive knowledge and expertise to provide proper care, especially in rural communities. Given recent advances in research and treatment, there is enormous opportunity to transform the way we care for people suffering from SCD and conquer this disease. …

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