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Sickle cell grant targets barriers to care

Story Date: Tue, 25 Sep 2012 15:18:00 EDT

EVMS is working alongside the Virginia Commonwealth University School of Medicine in a research project that will explore ways to overcome barriers to health care among people with sickle cell disease.

The effort, that also involves Children's Hospital of The King's Daughters (CHKD) and the Virginia Department of Health, is supported by a five-year, $3.1 million grant from the National Heart, Lung and Blood Institute of the National Institutes of Health.

One barrier to health care for adults with sickle cell disease is that a large percentage of those patients are not in specialty care, even though not being in specialty care may be fatal. Another barrier is that physicians may not be fully familiar with Hydroxyurea, the first and only FDA-approved remittive drug for sickle cell disease. Unfamiliarity with the drug can lead to inconsistent determination of eligibility and dosage. Other barriers to care include inconvenience associated with therapy, mistrust of relative benefits and harms and poor medication access.

The project plan is a two-phase demonstration, first of improvement in the percentage of adults with sickle cell disease who are in specialty care, then of improvement in adherence to Hydroxyurea standards in eligible adults. Both phases will utilize specially trained sickle cell disease patient navigators.

"So many vital health advances never make it into the hands of those who most need them," says Wally Smith, MD, principal investigator, professor of internal medicine and scientific director of the VCU Center on Health Disparities. "This grant will undoubtedly save lives and improve quality of life simply by demonstrating the value of patient navigators to get sickle cell care to those with barriers to care."

This project will be critically important in demonstrating the feasibility of a statewide community-based strategy to assist vulnerable sickle cell disease adults in obtaining specialty care, likely prolonging life and creating a model that other states could adopt, Dr. Smith says.

Ian Chen, MD, assistant professor of internal medicine, staffs the EVMS clinic with Mitchell Goodman, III, M.D., assistant professor of internal medicine, and Mary Crutchfield, FNP.

"EVMS is pleased to be partnering with VCU on this important project," Dr, Chen says. "The EVMS Sickle Cell disease management program functions as a 'medical home' to adult sickle cell patients in the southeastern Virginia area."

CHKD will employ one of the patient navigators for the study and hopes to enroll several CHKD patients with sickle cell disease ages 15-21 years. Anthony Villella, MD, a hematologist/oncologist with Children's Specialty Group who practices at CHKD, is a co-investigator for the study. CHKD Transition Coordinator Mitzi Glass, LCSW, is a consultant to the project.

The work is supported by the National Heart, Lung and Blood Institute of the National Institutes of Health under award number R18HL112737.