The Virginia Commonwealth University School of Medicine has been awarded a five-year grant totaling $3.1 million from the National Heart, Lung and Blood Institute of the National Institutes of Health for research in overcoming barriers to health care among adults with sickle cell disease.
Sub-awardees are Eastern Virginia Medical School, Children’s Hospital of The King’s Daughters and the Virginia Department of Health.
One barrier to health care for adults with sickle cell disease is that a large percentage of those patients may not be in specialty care, 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,” said Wally Smith, M.D., 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, Smith said.
VCU and EVMS are home to two of the top sickle cell programs in Virginia, with VCU’s program being the first in the state to define the epidemiology of pain in adult sickle cell patients on a population basis.
Previous work at VCU to combat sickle cell disease includes the development of Aes-103 (5-HMF), the only clinical-stage therapeutic that directly targets cell sickling. Aes-103 (5-HMF) was one of the first molecules to enter the NIH Therapeutics for Rare and Neglected Diseases program.
“EVMS is pleased to be partnering with VCU on this important project. The EVMS Sickle Cell disease management program functions as a ‘medical home’ to adult sickle cell patients in the southeastern Virginia area,” said Ian Chen, M.D., assistant professor of internal medicine, who staffs the EVMS clinic with Mitchell Goodman, III, M.D., assistant professor of internal medicine, and Mary Crutchfield, FNP.
Children’s Hospital of The King’s Daughters (CHKD) in Norfolk 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, M.D., 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.
