Leading the Fight Against Sickle Cell Disease in Virginia
July 2013 -- Last September, the Division of General Internal Medicine in VCU’s Department of Internal Medicine was awarded a five-year grant for $3.1 million for research in overcoming barriers to health care among adults with Sickle Cell Disease (SCD) in Virginia. The grant was awarded by the National Heart, Lung and Blood Institute (NHLBI) of the National Institutes of Health. Wally Smith, M.D., Professor of Internal Medicine and Scientific Director of the VCU Center on Health Disparities, is the principal investigator for this award.
Dr. Smith notes that SCD is a genetic hemoglobinopathy that causes severe, disabling pain throughout the body, immune deficiencies and death from infection, and chronic organ failure, as well as anemia. He reports that SCD has been historically under-researched, underfunded, and undertreated: “The problem with SCD is that it is both rare and prevalent in historically disenfranchised populations. So it is almost invisible to the American eye. For example, we do not know how many people in the United States have SCD.”
Dr. Wally Smith, Professor of Medicine and Scientific Director of the VCU Center on Health Disparities, is the principal investigator on an award form the National Heart, Lung and Blood Institute for research in overcoming barriers to Sickle Cell Disease treatment.
Interestingly, the patient landscape of SCD is changing. Whereas it has traditionally been called an African-American disease in the US, mixed race relationships and trans-continental migration are now more common than in the 1970s when SCD first received national attention. Dr. Smith notes, “The disease has literally ‘changed color.’ Every state now screens every newborn in every hospital for SCD. I currently have a white patient, and several Middle Eastern patients.”
In response to the undertreatment of this disease, Dr. Smith, as well as collaborators at Eastern Virginia Medical School and Children’s Hospital of the King’s Daughters, are employing a new strategy to disseminate the only available drug to treat SCD. “We are trying to see if patient navigators (or lay health workers) and a public health strategy will work,” said Dr. Smith. He also adds “We now have a drug with FDA approval and a federal public mandate to utilize it more: Hydroxyurea.” Hydroxyurea is the only FDA-approved effective anti-sickling drug. It is well researched with 20 years of study of its use in SCD.
“We are having fun learning about how to do public health for SCD and to get information about treatment to the public... With Navigators on the ground and the CDC on board, we are excited about future advances in Sickle Cell Disease.”
Dr. Smith’s project targets patients in a large portion of Virginia, not just Richmond. There are two phases to the project: phase one aims to identify and increase the percentage of adults with SCD who are in specialty care, and phase two aims to increase awareness, use, and adherence to use of Hydroxyurea amongst eligible patients. What makes this project unique and unlike any the Blood Disease branch of NIH has sponsored before is that it randomizes patients to two groups, only one of which is assigned patient navigators (or lay-health workers) trained in SCD in order to help them.
Since receiving the award last year, Dr. Smith and his collaborators have been working diligently to implement the planned project. While it is still early in the project, they have created an educational curriculum to train patient navigators. “Because this type of worker is new, there are few curricula. We developed one from scratch,” said Dr. Smith. Following curriculum development, patient navigators in Richmond and Norfolk were hired. Phase one of the project is already well underway. “We are having fun learning about how to do public health for SCD and to get information about treatment to the public,” reported Dr. Smith.
Another significant development in the project is that the Center for Disease Control and Prevention learned of the work being done at VCU by Dr. Smith and has requested a July meeting to learn more about the project. The CDC recently recognized how little understood and undertreated SCD is, and has launched dissemination projects in several states. This meeting will allow the CDC and VCU to potentially join forces to effectively identify and treat patients who suffer from SCD. “We are extremely excited about this,” said Dr. Smith. “This is big, because the CDC’s attention to a particular project spells potential national significance. With Navigators on the ground and the CDC on board, we are excited about future advances in Sickle Cell Disease.” -- IM