“People living with sickle cell are not trying to game the system. They’re really just asking for help and support and they just want to be believed” says Brown.
Sickle cell disease is a genetic inherited disease that affects the red blood cells. According to the CDC , it occurs in 1 out of every 365 Black or African American births and about 1 in 13 Black or African American babies are born with sickle cell trait.
One of the symptoms sickle cell patients experience is severe pain throughout the body and because they may not appear “sick” sometimes their pain is minimized or dismissed when navigating the medical space.
Dr. Tartania Brown (senior palliative care physician at MJHS Hospice and Palliative Care and a person living with SCD) shared how a study looking at electronic health records was released and showed persons of Black or African American descent had two and a half times more negative comments in their electronic health record and persons with sickle cell disease had even higher numbers than that.
“It shows that there’s just a bias that exists there,” says Brown. “People would say things like in quotations ‘they call it the severest pain they have.’ “But why would it need to be in quotations; it could be the severest pain they have.”
Brown says not having trust and belief on either side from the patient to the doctor or the doctor to the patient causes a true breakdown in communication and a true breakdown in care.
According to Pfizer, several studies show how stigma from healthcare providers may impact a patient’s physical well-being: People with SCD reported being mistaken as drug seekers or drug addicts.
“The main thing I would like to debunk about living with sickle cell disease is that persons with sickle cell disease are not trying out for an Academy Award,” says Brown.“And what I mean by that is patients are not acting. They’re not trying to gain something from you or game the system. They’re really just asking for help and support and they just want to be believed.”
Brown continues, “They truly are living their day to day life. And unfortunately, part of their day to day life is interacting with the medical world. But once they leave the medical world, they truly do want to go back into the world and live their day to day life and it’s our duty in the medical world to help our patients get back to their lives as best as they can.”
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