Impact of Sickle Cell on Society
Sickle Cell
Genetic disease
a disease that is caused by a change, or mutation, in someone’s DNA sequence
“We’re dealing with racial problems with the disease, but we’re also dealing with medical ignorance about the disease, too.”
—Joyce, Parent
Hurdles in Healthcare
wait up to 50% longer
for care in the emergency department comparedto other people, even after accounting for race. People with sickle
cell may have to
wait up to 50% longer
for care in the emergencydepartment compared to
other people, even after
accounting for race.
- 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 readmissions. An improvement in communication has the potential to decrease readmissions, and potentially lower use of hospitalizations for acute care.
The Impact of Sickle Cell
7 to 11 times higher than costs for the general US population.
aUS historical data was reviewed from 2010 to 2016.
bSevere sickle cell disease (characterized by frequent vaso-occlusive events [VOEs] over a 2 year period).
7 to 11 times higher than costs
for the general US population.
aUS historical data was reviewed from 2010 to 2016.
bSevere sickle cell disease (characterized by frequent vaso-occlusive events [VOEs] over a 2 year period).
revealed that the estimated cost
of healthcare for a person with
sickle cell diseaseb was between
$2.5 million and $4 million
over the course of their
lifetime, which is
7 to 11 times higher
than costs for the general US
population.
7
to 11 times higher
than costs for the general US
population.
aUS historical data was reviewed from 2010 to 2016.
bSevere sickle cell disease (characterized by frequent vaso-occlusive events [VOEs] over a 2 year period).
Medical Bias Against People With Sickle Cell
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.
One of the hardest things I had to overcome...has just been dealing with medical bias in the hospital.”
One of the hardest things I had to overcome...has just been dealing with medical bias in the hospital.”
SHAMONICA
Living With Sickle Cell
What Can You Do?
comprehensive care that includes careful monitoring and management. Consider reaching out to patient advocacy organizations that may be able to help you better navigate the healthcare system.
Every voice, no matter how big or small, can spark a conversation and action to help drive change for sickle cell. Sign up to stay connected through email with resources, support, ways to connect with others, and more information about sickle cell.
Recognizing how sickle cell impacts your life may help spark important discussions with others to bring changes in your care and the care of your loved ones. How does sickle cell affect you?