An Agenda For Sickle Cell Disease Research That Encompasses Lived Experience

Editor’s Note

This article is part of a Health Affairs Forefront series on “The Future of Sickle Cell Disease Research and Care” with support from the American Society of Hematology. The articles in the series are independently reviewed and edited by Health Affairs Forefront.

It wasn’t so long ago that sickle cell disease (SCD) was described as a disorder of childhood. For decades, many children living with the condition faced complications that threatened their quality of life and often led to an early death.

Today, gains in early diagnosis, education, and comprehensive medical care have resulted in most individuals with SCD living into adulthood. However, it should be noted that the median life expectancy for those...