NEW HAVEN, Conn. (WTNH) — News 8 is once again honoring Black history by looking at health care and the racial disparities many report facing.
According to the Pew Research Center, overall, 18% of Black adults report poor health, and Black Americans have higher rates of death from cancer and higher maternal mortality rates for both women and infants.
A majority of Black Americans say they’ve had at least one negative interaction with a health care provider, like pain not being taken seriously, being rushed through treatment, or needing to speak up to get the proper care.
A disease known to cause extreme pain for patients is sickle cell disease. It primarily impacts people of color.
Dr. Cece Calhoun [Theta Epsilon Omega Chapter Member], the medical director of the Adult Sickle Cell Program at Smilow Cancer Hospital, describes how patients often have painful episodes.
“I can’t see somebody and know they have sickle cell,” she said. “I can’t know they’re having pain.”
The genetic blood disease causes red blood cells to be shaped like a crescent or sickle, preventing oxygen from getting where it needs to go.
“It affects every organ in your body,” Calhoun said. “Most notably, we think about debilitating pain, but sickle cell can affect the brain, eyes, lungs, and every part of the body.”
That pain can be hard to explain to doctors.
“Being an African American, encountering health and health care, I think there is a health care system that’s really finding its way in how to care for patients the best,” Calhoun said. “Then you layer on that a genetic disorder that causes pain. You can’t look at someone and say, ‘Yes, you’re having pain.’ You have to believe what they say, and I think that requires trust.”
The cause of the disease was first discovered in 1908, and there are still only a handful of treatments, but there is new hope in gene therapy.
“With gene therapy, you serve as your own donor,” Calhoun said. “What happens is I would take someone’s stem cells out of their blood and outside of their blood change them to make a hemoglobin that doesn’t sickle or to make more fetal hemoglobin, then I give them back to that person, effectively curing their disease.”
Blood donations also remain a critical resource.
“When we think about blood and blood donation, it’s really important to get a diverse donor pool because blood is our ace in the whole,” Calhoun said. “When our patients are critically ill, we give them blood.”
Whatever the treatment, the goal for Calhoun and her team is to continue advocating for those living with the disease.
“Historically, we have been this population has been underlooked by the health care system or in general,” said Joanna Cole, a sickle cell nurse practitioner at Smilow Cancer Hospital. “It’s important for us to advocate and raise awareness. Sickle cell is real.
“We always say it’s our goal to keep our patients healthy and safe, but the next part is to see them not just alive and surviving but thriving,” Calhoun said.