For individuals living with sickle cell disease (SCD), the transition from pediatric to adult care can be one of the most critical — and risky — moments in their health journey. During a recent BDLive panel discussion, healthcare leaders, advocates, and individuals with lived experience examined the systemic gaps, emotional challenges, and solutions needed to support young people as they navigate this shift.
Moderated by Yvonne Bryant, Commercial Lead of Hemoglobinopathies at Novo Nordisk, the conversation centered on how collaboration between healthcare systems, community organizations, families, and people living with SCD can help improve long-term outcomes. “This transition period is very critical and has a profound impact on long-term health and quality of life for people living with SCD,” Bryant said.
Lived Experience: Navigating Isolation and Finding Community
Rialton Reid, an advocate with the Sickle Cell Disease Foundation of California (SCDFC), shared his personal experience growing up with SCD and transitioning into adult care. He described the isolation many young people with SCD face — and the difference community support can make. “Growing up with SCD is challenging because it’s such an individualized disease,” Reid said. “You don’t always come across people who truly understand what you’re going through.”
Reid credited his family — particularly his mother — with teaching him how to advocate for himself, while programs like Camp Crescent Moon and SC Crew helped him build confidence, knowledge, and peer connections. “You’re the expert on your own body. Know your disease inside and out — and find your community.”
Why the Transition Is So Difficult
From a clinical perspective, Dr. Diane Nugent, Professor and Chief of Pediatric Hematology at Rady Children’s Health, explained why the transition from pediatric to adult care is often disruptive.
Children with SCD are typically diagnosed at birth and followed closely by pediatric specialists for their entire childhood. These long-standing relationships foster trust, continuity, and holistic care — elements that are often missing in adult healthcare settings.
“You go from a nurturing environment where everyone knows you to a busy adult practice focused on efficiency,” Dr. Nugent explained. “That shift can feel jarring.”
She also highlighted critical medical gaps that can occur when adult providers lack SCD-specific expertise, including misinterpretation of lab values, delayed recognition of organ damage, and unnecessary transfusions as “SCD is not the same as treating other adults. Providers need disease-specific knowledge to avoid doing harm.”
The Role of Community-Based Organizations
Anthony Wells, Regional Community Health Worker and Clinical Manager at SCDFC, emphasized the essential role community-based organizations play during the transition period — particularly for young adults ages 18–25, a group with historically higher SCD mortality rates.
“We exist inside and outside the clinic,” Wells said. “And because our community trusts us, we can educate, advocate, and prepare people in ways the system alone often can’t.” Wells described the long-term consequences of being “lost to care,” including mismanaging levels of iron in the blood, under-immunization, unmanaged organ damage, and preventable hospitalizations.
“Even when you feel well, SCD is still causing damage. You may not feel it today — but the bill will come due.”
SC Crew: A Blueprint for Successful Transition
Panelists repeatedly pointed to SC Crew, a young adult transition support program developed by SCDFC, as a model for effective care and self-advocacy.. The program combines education, mentorship, life-skills training, and hands-on practice, including mock adult clinic visits. “It’s not just about managing the disease,” Dr. Nugent said. “It’s about learning how to manage adulthood.”
Participants learn how to navigate insurance, communicate with providers, understand medications, and advocate for themselves—while holding one another accountable.
Collaboration as the Path Forward
When asked how systems can improve outcomes, Reid emphasized the importance of including patients as partners in care design.
“Actually talk to people with SCD,” he said. “Listen to what we say we need — and work with us.”
Panelists agreed that meaningful progress requires collaboration across healthcare providers, community organizations, advocacy groups, and trusted platforms like BlackDoctor.org, which elevate culturally relevant health information.
Looking Ahead: Hope for the Future
Despite ongoing challenges, the panel closed with optimism. Advances in gene therapy, expanding adult care networks, and community-driven programs are reshaping the future of SCD care. “These are incredibly resilient individuals,” Dr. Nugent said. “With the right support, they become more than their disease.”
For Reid, the mission remains personal, stating that “we have SCD, SCD doesn’t have us.”