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HURDLES IN HEALTHCARE
THE IMPACT OF SICKLE CELL
MEDICAL BIAS AGAINST PEOPLE WITH SICKLE CELL
HURDLES IN HEALTHCARE
THE IMPACT OF SICKLE CELL
MEDICAL BIAS AGAINST PEOPLE WITH SICKLE CELL

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

From hospital costs and lost time, to issues of medical bias, sickle cell can have a big impact on quality of life. It’s time for all of us to start thinking differently about sickle cell and its underlying cause—as individuals and as a society.
“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

Despite being one of the first Genetic diseasea disease that is caused by a change, or mutation, in someone’s DNA sequence 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. 
People with sickle cell may have to

wait up to 50% longer

for care in the emergency department compared
to other people, even after accounting for race. People with sickle
cell may have to

wait up to 50% longer

for care in the emergency
department compared to
other people, even after
accounting for race.
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 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

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.
A study sponsored by bluebird bio* revealed that the estimated cost of healthcare for a person with sickle cell disease† was between $4 and $6 million over the course of their lifetime, not including out-of-pocket costs.

*US historical data was reviewed in 2023.
†Severe sickle cell disease (characterized by frequent vaso-occlusive events [VOEs] over a 2-year period).

 A study sponsored by bluebird bio* revealed that the estimated cost of healthcare for a person with sickle cell disease† was between $4 and $6 million over the course of their lifetime, not including out-of-pocket costs.

*US historical data was reviewed in 2023.
†Severe sickle cell disease (characterized by frequent vaso-occlusive events [VOEs] over a 2-year period).

 A study sponsored by bluebird bio* revealed that the estimated cost of healthcare for a person with sickle cell disease† was between $4 and $6 million over the course of their lifetime, not including out-of-pocket costs.

*US historical data was reviewed in 2023.
†Severe sickle cell disease (characterized by frequent vaso-occlusive events [VOEs] over a 2-year period).

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.
Photo of Shamonica, who lives with sickle cell and deals with sickle cell discrimination in the hospital
 

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?

It’s important to work with your care team to make sure you are receiving
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.

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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?

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