NIH Awards $7.7M to Improve Patient Access to Sickle Cell Care

The National Institutes of Health (NIH) has awarded a five-year, $7.7-million grant to support a new research project that seeks to lower barriers to healthcare for people with sickle cell disease (SCD).

The project, titled “Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) for Sickle Cell disease,” is being led by Julie Kanter, MD, associate professor and co-director of the University of Alabama at Birmingham Lifespan Comprehensive Sickle Cell Center.

“Our goal with this project is to reduce the science-to-practice gap in SCD by identifying individuals who are not receiving guideline based SCD care,” Kanter said in a university press release.

SCD is caused by mutations in a gene that provides instructions for making a part of hemoglobin, the protein that red blood cells use to carry oxygen through the bloodstream. Because of these mutations, an abnormal form of hemoglobin is produced that tends to form clumps in red blood cells, deforming them into the characteristic “sickle” shape that gives the disease its name.

This sickling can lead to anemia, where red blood cells break down prematurely and oxygen cannot be effectively delivered to body tissues, as well as to painful vaso-occlusive crises (VOCs) and other symptoms. VOCs occur when abnormally-shaped red blood cells obstruct blood vessels to the point of blocking blood flow and depriving tissues of oxygen.

People with SCD are advised to work with a specialist to develop a care plan, including treatments and other steps that make living with SCD more manageable. However, up to half of adults with the disease do not see specialists. This gap in care is particularly pronounced in rural communities and populations facing socioeconomic challenges.

The new project seeks to identify people with SCD who are not receiving proper care and connect them with specialists who can provide that care. The project will build off of similar efforts to help boost access to care for people who’ve been infected with the human immunodeficiency virus (HIV).

“Similar to SCD, individuals with HIV have faced significant healthcare stigma causing reciprocal misgivings about healthcare,” Kanter said. “In this project, we will adapt models for patient identification and engagement in HIV to SCD using a multi-staged, patient-oriented process.”

“People not getting the care they need is a major issue for all people with health disparities but especially those with a stigmatizing disease,” she added.