Honor Sickle Cell Disease Awareness Month by donating blood at the upcoming Sabriya’s Castle of Fun Blood Drive
Sickle cell disease is a genetic blood disorder that is associated with various complications such as episodes of pain, pneumonia or lung problems, stroke, and other long-term medical problems. This condition affects more than 90,000 people in the US, with more than 6,000 in the state of California alone, and affects a disproportionate percentage of people of African, Mediterranean, and Hispanic descent. As a result of recent medical advancements that have revolutionized patient care, children with sickle cell disease, who previously did not survive their childhood years, are now living well into adulthood. Unfortunately the health care field has not kept pace with this emerging population of young adult patients and is not adequately prepared to care for them. Adolescents and young adults with chronic diseases face many challenges during this time period, which include becoming self-reliant and learning how to navigate the adult medical system. Those with sickle cell disease in particular have unique challenges, which include difficulties with decision-making as a result of disease complications, unequal access to health care and stigmas due to a need for pain medication to properly manage their disease.
By the time sickle cell patients are young adults, medical management is increasingly more complicated and most general practitioners are not trained nor do they have the resources in their offices to handle these cases. Patients have become accustomed to the medical care they have received in a pediatric comprehensive care center by physicians that are very familiar with their history and are supported by additional resources. Successful transition to the adult health care system, which may be more fragmented, lack essential resources, and where the number of knowledgeable adult providers is limited, becomes challenging if not impossible. As a result, many pediatric patients are either transferred abruptly to adult care with no prior preparation or fall through the cracks and receive their medical care mainly through Emergency Departments, which are ill-equipped to provide necessary comprehensive care. The sub-optimal medical care that these young adults receive leads to increased complications and worse outcomes.
This is a medical crisis! We must equip our young adults to be better prepared for this transition and navigate the adult health care system by teaching them about their disease and giving them the tools to communicate effectively with adult providers. We must also develop effective systems to help these young adults transition successfully to adult providers by creating linkages between pediatric comprehensive centers and adult providers interested in caring for patients with sickle cell disease. Educational opportunities need to be made available to these adult providers, as well as maintain open lines of communication between their new adult providers and the pediatric centers familiar with these now “adult” patients in order to facilitate the continuous delivery of the specialized medical care these patients require. We will also need to increase our research efforts to determine which strategies for collaboration will be the most effective at improving a patient’s access to quality care.
This is a dilemma for the entire community and one that will take all of us to address adequately. While we celebrate the wonderful advancements that have been made in the care of patients with sickle cell disease, we must diligently look for ways to continue to provide excellent care for them as they become young adults. We need to be vigilant in this endeavor, or the medical strides made will have been made in vain.