Caring for the Whole Person: A Lifelong Approach to Sickle Cell Disease

For many families, the journey with sickle cell disease begins in the first days of life. Through newborn screenings, children are often diagnosed in infancy, with hopes of connecting them early to specialized care and support. At Children's Hospital Colorado, that early connection is the start of a lifelong partnership with a unique care model and pediatric hematologists like Christopher McKinney, MD.

Through a comprehensive care model that follows patients from childhood through adolescence and into adulthood, the Pediatric Sickle Cell Program focuses on more than managing symptoms or treating complications. The goal is to support every aspect of a patient's wellbeing from coordinating medical care, addressing social and emotional needs and helping patients and families navigate each stage of life with confidence.

“We truly do function as a medical home for a lot of these patients,” Dr. McKinney says. “It's really much broader than just the medical care that we're providing.”

More than medical care for sickle cell disease management

Sickle cell disease affects every aspect of a person’s life, which requires effective care far beyond treating blood-related complications. By bringing together specialists from across disciplines, the team can address the full picture of care.

In addition to hematology experts in the Center for Cancer and Blood Disorders, the program coordinates specialists in neuropsychology, developmental pediatrics, physical therapy, chronic pain management, transfusion medicine, transplant services, genetic counseling and social work. This collaborative approach impacts support at every stage of life from managing symptoms and preventing complications, to navigating school, mental health challenges , reproductive realities and financial concerns that come with lifelong healthcare treatments.

"We really want to be utilizing all of the available resources in order to take a multimodal approach," Dr. McKinney says. "That means we want to make sure that our patients are being treated, and we are not just throwing pain medications at them."

For patients experiencing pain, the focus is on providing comprehensive, individualized sickle cell care rather than relying on single treatment strategies. This approach opens doors to new options like gene therapies.

Building trusted relationships through a whole-person care model

The Sickle Cell Program becomes more than a place to receive treatment, but a trusted source of support throughout childhood, adolescence and into adulthood. Through its whole-person care model, the program helps patients navigate not only the medical challenges of sickle cell disease, but also the milestones and decisions that shape their lives.

For the past 50 years, sickle cell patients at Children’s Colorado have been seen by just four lead physicians. This ensures a remarkable level of stability that has helped doctors work alongside families for years, often caring for multiple generations. That security helps the team better understand each family's experiences, anticipate their needs and provide care that is deeply personalized.

"That trust is everything," says Dr. McKinney. "When you start talking about generational aspects, that continuity is even more important."

The relationships built over time also lay the foundation for a successful transition to adult care. Beginning in adolescence, patients are encouraged by their team to develop the knowledge and self-advocacy skills needed to manage their health independently.

"We need to be able to train them to advocate for themselves and to be able to talk about their disease," Dr. McKinney says.

Like many children with chronic conditions, learning how to navigate their healthcare needs outside of a pediatric setting can be difficult. But as patients prepare for adulthood, they do so with the confidence that comes from years of support by a team that knows them, their history and their goals.

Expanding care with sickle cell gene therapy

The whole-person care model allows teams to research and provide access to some of the most advanced treatments available for sickle cell disease. Many of these therapies, including gene therapy, have only become available in recent years, offering new possibilities for patients who previously had few curative options. Unlike many centers, the program incorporates therapy services directly in the sickle cell clinic as part of their comprehensive care, allowing patients to explore their options with providers they already know and trust.

"Having a model where transformative and curative therapies are embedded within the sickle cell clinic is really unique," Dr. McKinney says.

That continuity can be especially important when patients are considering complex treatment decisions.

"They know the provider. We've been with them since they've been born or since they were small children," he says, "and it makes it a lot easier for us to have that trust with them."

By building a framework built on research, transformative therapies and comprehensive care within one trusted program, Dr. McKinney and his team are redefining what’s possible for patients with sickle cell disease.