Each year in the United States, hundreds of babies are born with sickle cell disease (SCD), joining the nearly 100,000 Americans who already live with this disease. As pediatricians, we understand the challenges parents and caregivers face when attempting to secure the best and most effective care for their children. Unfortunately, when children living with sickle cell disease become adolescents and young adults, it can become even more difficult to navigate management and treatment options as health complications including pain crises often grow more intense and frequent. The poor adherence to treatment guidelines, lack of innovation, gaps in the delivery system, and underlying discrimination also add additional hurdles that make it difficult for people living with this disease to live a normal, high quality life.
At the U.S. Department of Health and Human Services (HHS), we are committed to improving the quality of life for all those living with SCD. Many young adults and adults living with SCD face challenges accessing care due to a national shortage of SCD-trained hematologists and primary care providers, making it difficult to receive the comprehensive specialty care and treatment they need. To mitigate this shortfall, we launched the Sickle Cell Disease Training and Mentoring Program (STAMP) with the objective of improving access to care for those living with the disease.
Through our cross-agency collaborative program, primary care providers are receiving online training on the basics of SCD care, such as pain management, provision of hydroxyurea, and recommended preventive services. This free 12-part telehealth webinar series is taught by hematologists, and provides physicians and other primary care providers with an opportunity to receive continuing education credits. To date, STAMP has already delivered trainings to more than 100 participants from 22 states across the country.
The STAMP mentors utilize the ECHO (Extension for Community Healthcare Outcomes) tele-mentoring model, discussing real-life SCD cases while providing practical expertise and insight on common SCD topics. These trainings are invaluable for increasing the network of providers able to deliver high-quality care. Those eligible for STAMP training also include healthcare professionals outside the traditional realm of primary care, such as emergency providers, social workers, psychologists, public health practitioners, and students/medical trainees.
STAMP is just one component of HHS’ comprehensive initiative to extend the average lifespan of Americans living with SCD by at least 10 years, within 10 years. It also complements HHS’ other SCD-related efforts, including the National Institutes of Health’s Cure Sickle Cell Initiative, which aims to accelerate the development of genetic therapies to develop a widely available, low risk cure for SCD within the next decade.
Now more than ever, we have the tools and ability to improve the lives of those living with SCD. More importantly, we have capable and passionate leadership. The opportunity before us to make a difference in the lives of those suffering from this disease is realistic, but it requires a fully collaborative and interactive approach. We encourage primary care providers to register for STAMP and become part of the solution. Innovative programs like STAMP have the potential to redefine how healthcare professionals prepare themselves to effectively care for diverse patient groups with relatively uncommon diseases, like SCD. As a result, we can assure that all Americans have a fair and realistic opportunity to live healthier lives.