Sickle Cell & You
Living with sickle cell takes an incredible amount of courage and strength. It’s good to remember that you are not alone. Together, we all can spark change for sickle cell and help shift the current misconceptions that make the experience of living with sickle cell more challenging than it should be.
Hurdles in Healthcare
Despite being one of the first genetic diseases to be identified, sickle cell has been stigmatized and marginalized, and research has been underfunded. People with sickle cell aren’t receiving consistent care in emergency departments for many reasons, including overcrowding, healthcare providers lacking familiarity with guidelines for treating the disease, poor communication among healthcare providers, as well as stigma and medical bias associated with sickle cell.
There are many barriers that may prevent people with sickle cell from receiving the care they need, including:
- Lack of knowledge of sickle cell among healthcare providers
- Lack of transportation
- Lack of implementation of standardized care in healthcare facilities across the country
- Minimal or no health insurance coverage
- Inconvenient hours or location of doctors
Open communication with your healthcare team can be a powerful factor in predicting hospitalizations and re-admissions. An improvement in communication has the potential to decrease re-admissions, and potentially lower use of hospitalizations for acute care.
The Impact of Sickle Cell
Because many people with sickle cell typically need comprehensive, lifelong care, the cost to cover treatment can be expensive. Hospital admissions and emergency department visits due to unpredictable pain crises can add to these costs, as can complications of the disease, which often need their own treatment.
Medical Bias Against People With Sickle Cell
Research suggests that racial bias in healthcare settings contributes to a barrier to care. Children with sickle cell (88% Black) complaining of intense pain had to wait longer to receive pain medicine than did children with long bone fractures (15% Black).
Advocating for better care is as important as ever in the sickle cell community.
Overcoming bias and mistrust requires a partnership with your care team. If you are concerned about medical bias when it comes to your sickle cell care, it’s important to let people know. It may be helpful to find out if your hospital has a patient advocacy office, patient or member services and formally document your experience in writing. Additionally, consider adding a case manager to your healthcare team to increase awareness of medical needs in sickle cell management. Case managers can work with healthcare providers to help address racial disparities and minimize barriers to care.