In the United States, children with Sickle Cell Disease (SCD) have more options than adults for their health management with pediatricians, family medicine doctors, and hematology specialists. However, when patients turn 18 and need to transition to adult care, a critical shortage of adult healthcare providers leaves this population in a vulnerable position. On November 9th, 2018 Dr. Wanda Whiten-Shurney, CEO and Medical Director of the Sickle Cell Disease Association of America – Michigan Chapter (SCDAA-MI), discussed this topic and ways that her team is working to address it at the 2018 Management of Sickle Cell Disease Conference in Chicago, IL.
One way that Dr. Whitten-Shurney is attempting to address the lack of access to care is through the support of the HRSA Treatment Demonstration Project. As a participant in the HRSA Treatment Demonstration Project grant, the SCDAA-MI receives federal funding to:
- Increase the number of providers treating persons for sickle cell disease or sickle cell related issues
- Increase the number of providers prescribing disease-modifying therapies, such as hydroxyurea, and L-glutamine
- Increase the number of patients receiving regular care from providers knowledgeable about treating sickle cell disease
Partnerships include sickle cell treatment centers, Federally Qualified Health Centers (FQHCs), community-based organizations, parents and patients. Dr. Whitten-Shurney, along with a team of community health workers, helps educate and connect adult patients to primary care. Through education, these families learn how to manage the disease on the “home front” through lifestyle changes, nutrition, and they learn when to seek medical help. Additionally, the SCDAA-MI team has started a project to work on facilitating adult care by reaching out to FQHCs and others.
Dr. Shurney also discussed that there are many ongoing clinical studies in sickle cell. She is part of the National Institutes of Health (NIH) Cure Sickle Cell Initiative and is optimistic that we should see results of this effort in 5 years. As part of her commitment to patients, she has partnered with the Sickle Cell Community Consortium (SCCC) to develop a patient empowerment toolkit. This toolkit includes a nutrition guide, the NHLBI publication, “Evidence-based Management of Sickle Cell Disease”, information on where to find helpful apps as well as the personalized passport to health which helps patients keep all their information in one place.
Awareness is simply the first step. We must act now to improve the quality of care for the people living with sickle cell disease. Without doctors, nurses, and allied medical professionals who proactively seek training in evidence-based care, existing and future treatments for this condition will not reach the patients. Collectively, we can change the narrative of sickle cell disease in the US.