Skip to Main Content

Helping Young Adults with Sickle Cell Disease Navigate Healthcare Inequities

September 13, 2023
by Christina Frank

The Department of Internal Medicine’s August 10, 2023, grand rounds, “Understanding Transition in Sickle Cell Disease” was given by Cece Calhoun, MD, MPHS, MBA, assistant professor of medicine (hematology), Yale School of Medicine, and medical director of the Sickle Cell Program at Smilow Cancer Hospital and Yale Cancer Center.

Calhoun’s talk focused on the inequities faced by a majority of people with sickle cell disease (SCD), particularly teenagers and young adults, as they navigate the transition from pediatric to adult care.

“Persons with sickle cell, I believe, are really a microcosm of the greater health and healthcare inequities that we face in our society,” Calhoun said.

Decoding Differences

Calhoun started by sharing how her experiences growing up in a socioeconomically disadvantaged area of Detroit informed her awareness that inequity exists in many settings.

“I had an immense sense of pride in being Black, in my culture, and just in who I was,” Calhoun said. “What I didn't realize at the time is that I was essentially growing up in poverty.”

It was during her time at a high school in an upper-class neighborhood that the differences in people’s life experiences became evident. “I thought, ‘Oh, okay, people are living differently than I am on the east side of Detroit,’” Calhoun says. I think that was my first encounter with inequities. It brought my awareness to this.”

Barriers to Care

Calhoun realized that she wanted to specialize in treating people with SCD during a rotation in medical school, where she met her first sickle cell patient, a 7-year-old girl who’d had a stroke. “It dawned on me that this was the intersection of so many things that were important to me,” she said. “It was science. It was my community. And it was an opportunity to make an impact.”

About 1 in 365 Black or African American babies are born with sickle cell disease. Their teen and young adult years are when they are most vulnerable to complications of the disease. To a large extent, this can be attributed to the lack of support as they transition from pediatric to adult care.

“When we think about health-related stigma and healthcare-related discrimination, we know that many people of color experience this. There’s literature that shows that persons with sickle cell, especially adolescents and young adults, experience this even more significantly,” said Calhoun. “As they get older, they may lose their government insurance, and that will be a barrier to care and to getting whatever therapies and interventions that they need.”

SCD patients face many more challenges as well. For one, there aren’t a lot of hematologists that care for people with sickle cell disease. Also, it is known that people of color do better with providers that look like them. “The lack of physicians of color is also an inequity,” said Calhoun. “And even if they find a physician they like, they may have a hard time getting to appointments if the office is located far away.”

Furthermore, employment opportunities and educational attainment are diminished in people with sickle cell because their life is disrupted by their disease and there is no infrastructure in place to support them.

Making a Difference

Calhoun said it’s critical to address healthcare inequities and think about health justice at every level. “That means strengthening our provider workforce with people of color, which starts with medical school and education, and training more competent, empathetic, and culturally aware providers to provide care for persons with sickle cell disease.” This also requires an investment in scientific discovery that advances the field, community partnership and amplifying the patient voice.

“How do we actually partner with patients to know what their needs are and bring those needs to the frontline, not just within our hospital buildings, but in our communities?” Calhoun asked.

“That goes into how policies shape our environments. When we think about ‘Big P’ policy, we need to think about advocates and our governmental structures, and not just local government, but state and federal government to enact policies to support persons with sickle cell. Overall, it's examining the entire structure that we're functioning in and thinking about how we need to revise those to really care for people—not just treat them, but care for them.”

The Department of Internal Medicine’s Section of Hematology has nationally and internationally renowned faculty who are leaders in their areas of research and clinical expertise, and are committed to advancing the science and practice of hematology by understanding the molecular basis of disease, and are translating basic discoveries to the clinic.

Submitted by Julie Parry on September 13, 2023