Cece Calhoun, MD, MPHS, MBA, a leading sickle cell disease (SCD) specialist at Yale School of Medicine, New Haven, Connecticut , was drawn to hematology for many reasons, but one has nothing to do with solving medical mysteries or helping people. 

“I’ve always loved the red blood cell,” she says. “If you ever seen it under electron microscopy, it looks very cool.”

But she doesn’t rhapsodize about the cells to her patients. Instead, she tells them that a red blood cell carries oxygen around “like a jelly donut,” with the vital stuff inside. When the cell gets misshapen, trouble comes. This isn’t the only way she connects to the patients she treats. She also makes a point to feel empathy even when they make bad choices about their health.

“Remember how you were at 16, 17, and 18,” she tells colleagues. “We all made mistakes and poor decisions even without having a chronic disease. Imagine layering on a lifelong illness with a shortened life expectancy that doesn’t have a lot of treatment options.”

In an interview, Calhoun talked about her passion for treating SCD, the challenging transition between adolescent and young adult care, and her hopes for the future of treatment.

How did you get into medicine?

I’m from Detroit and come from a family of civil servants, like bus drivers and postal workers, but no physicians. My parents encouraged curiosity in me and my younger sister. Initially, I thought I wanted to be a physical therapist because I loved working with athletes.

During my senior year of high school, I had a month-long shadowing experience with an orthopedic surgeon, who I consider my first professional mentor. That time with him was life-changing. I appreciated not just seeing the human body and surgeries, but also how he interacted with his patients, how they trusted him, and how he empowered them to live a good life. That’s when I decided medicine might be my path.

What drew you to hematology?

Working with people who have SCD represents the intersection of so many things I’m passionate about: the science of hematology, the opportunity to work with marginalized communities like the one I grew up in, and the realization of how much we still need to discover.

Through awesome mentorship, I learned how I could leverage research and health outcome science to impact people with sickle cell — maybe even people I would never meet — by helping to generate knowledge and answer really important questions in a rigorous fashion.

What fascinates you about blood cells?

When we think about fundamental life processes, we remember the electron transport chain from sixth-grade biology and how it ends with oxygen. That oxygen gets there through our red blood cells — the part of our body that helps provide the energy to stay alive.

I tell my young patients to think of blood as three types: white blood cells that fight infection, the flexible red blood cells that carry oxygen around like a jelly donut, and the most underrated cell — the platelet — that makes sure we don’t bleed for hours when we get a cut. It’s a carefully balanced system, and I’m fascinated by how we maintain that homeostasis and what happens when that balance is disrupted.

You’ve been in medicine for about 15 years. How has sickle cell treatment changed over that time?

We first learned about SCD in 1910. But there were about 70 years where there was no intervention until around 1998, when hydroxyurea was FDA-approved. Then we had another large gap until about 2016 or 2017, when we got additional disease-modifying medications. In December 2023, gene therapy and gene editing for SCD were FDA-approved, which has been tremendous.

There’s been increased awareness and investment in not just treating downstream consequences but treating SCD itself and understanding the environments that shape how patients experience their disease. What other supports besides pharmacotherapy can improve outcomes?

Who are your typical patients?

I see adolescents through adults with SCD. I have a particular interest in adolescents and young adults navigating that transition period, because we know that’s when morbidity and mortality start to rise.

It’s complicated, and not just because of the insidious effects of disease over the ages of 18 or 19 years in affecting organs. Young people are trying to find their way in the world, dealing with changes in insurance, resources, housing, and support systems. If you invest time, energy, and patience with young people, they can really soar. My responsibility is twofold: wrap around them with our team to make sure they feel well-supported — social workers, advanced practice providers, pharmacists, and not just me. And as medical director, I support those team members to function well in their jobs.

Why do you emphasize patient education?

Especially for young people whose parents managed their disease when they were children, the goal is to empower them with tools to care for themselves. I always say patients might be with me for a 45-minute visit, but they spend every other hour of every other day by themselves. We’ve got to do what we can in our time together to make sure they have all the information and help they need.

If someone understands the why behind certain treatments and advice, they’re more likely to hold onto that knowledge and use it outside of clinic visits. So, if a person with sickle cell understands that staying warm keeps blood vessels dilated with more room for blood to flow, decreasing the likelihood of a pain crisis, maybe they’ll grab that jacket when going out in the cold.

What advice would you give colleagues about helping patients through that tough transition?

As healthcare providers, we’re in a position of privilege and power because we have great knowledge. It’s incumbent upon us to use whatever knowledge and power we have to support our young people as they transition into a world that may not be comfortable or welcoming for them.

It’s okay to acknowledge your own humanity — that sometimes it requires more patience, effort, and persistence. That can be tiring. It’s helpful to remember those people you were really able to lift up and help. When patients come back and tell you they went to the emergency department by themselves and were able to explain everything about their condition, it makes you feel like a proud parent because you’ve empowered them with the knowledge they need to care for themselves.

What are typical outcomes for these patients today?

As excited as I am about how far we’ve come, we still have a long way to go. The life expectancy of a person with SCD is 20 years less than that of someone without SCD, everything else being equal, whether it’s race or socioeconomic status.

Even with therapies with curative potential — which is how we phrase it because it’s too new to know how long it lasts — we have so much work to do. Not everybody’s eligible for gene therapy, not everyone can access it, and not everyone has the psychosocial supports needed to successfully navigate the process.

Are we making progress on the transition front?

We have moved from understanding that transition is a problem to thinking about interventions that support it. Maybe in a few years, we’ll continue to see more positive outcomes, and that steep slope of increasing morbidity will flatten out a bit.

What are you working on research-wise?

My interest is around young people with sickle cell and improving their transition from pediatric to adult care. The American Academy of Pediatrics has guidelines to support healthcare transition that were revised in 2018, but we don’t find a consistent standard of care.

I leverage implementation science — theories, methods, and frameworks to increase uptake of evidence-based practices — paired with these evidence-based guidelines to develop structured transition programs. My work focuses on putting those guidelines into practice and examining how we shift the experience of transition, reduce the number of kids who get lost in that in-between time, and improve their readiness, self-management, empowerment, and disease management knowledge.

What’s coming next in sickle cell treatment?

In 5-10 years, we’re going to have a lot of discoveries about new disease-modification methods. Hydroxyurea has been our bread and butter since 1998. While we have a couple of new things, nothing has been as much of a landmark. But I think that’s coming. We’re going to have more than just a handful of options to help people treat their actual SCD and prevent complications.

As we start to think about the role that environment plays in how people experience SCD and its consequences, I think we’re going to develop interventions on a social level that allow us to support patients not just in staying alive, but really thriving. 

These might be school-based interventions or psychosocial supports — interventions that aren’t necessarily medicine- or hospital-based but will help our kids grow into healthy, thriving adults.

Calhoun disclosed serving on an advisory board for Pfizer.