At the Third Annual Pain Management and PMR Symposium: Advancing Comprehensive Sickle Cell Care Across the Continuum, I was reminded of something essential: the most powerful centers of excellence are not defined by buildings. They are defined by people, partnerships, and community. In many ways, what we created today echoed the origins of the sickle cell movement itself — when, in 1971, local leaders came together without a formal center, without a national platform, but with a shared commitment to dignity, equity, and better care.

Before we began, we grounded ourselves in the reality of the burden.

In 2021, an estimated 515,000 babies were born worldwide with sickle cell disease — a 14% increase since 2000. Today, 7.7 million people are living with the disease globally, and more than 81,000 children under five die each year from its complications.

Here in the United States, more than 90% of individuals living with sickle cell disease are Black or African American, and 1 in 350 non‑Hispanic Black newborns is born with sickle cell disease. And in New Jersey, newborn screening identifies ~2,900 infants with hemoglobin traits each year — one in every 34 babies — and nearly 40 newborns with sickle cell disease or another significant hemoglobinopathy.

But the story of newborn screening itself is a lesson in equity.

New Jersey began screening every newborn for sickle cell disease and other hemoglobinopathies in 1990 — three years after the NIH recommended and sixteen years before every state in the country required it. Universal screening did not reach all fifty states until May 1, 2006, nearly two decades after the science was settled. In New Jersey, the decades since 1990 have identified more than a thousand babies with sickle cell disease or a related condition, and the program continues to find close to forty each year.

It also identifies something else: roughly 2,900 babies a year, about one in every 34 born in this state, who carry a hemoglobin trait. And that is where the story usually stops. For most of those families, a letter in the first week of life is the last time anyone raises it — no counseling, no follow‑up, no conversation when that child grows up and starts thinking about having children of their own.

It is important to specify the year 2006. New York began implementing screening programs in 1975, and the National Institutes of Health (NIH) established a national consensus in 1987. This indicates that it took the country 31 years to achieve universal coverage from the initiation of the first program and 19 years from the establishment of a national recommendation to full adoption. For those concerned with health equity, this delay is significant, as it affected families whose children did not receive the necessary care.

We began with Dr. Jason Smith and Karen Macey‑Stewart,DNP, APRN, A-GNP, RN-PMGT who reframed pain management through a PM&R lens. They reminded us that pain in sickle cell disease is not simply a crisis to be treated, but a lived experience that demands coordination, compassion, and functional support.

Dr. Darius Adams and Dr. Deborah Booth continued with a thoughtful exploration of pharmacologic pain management and emerging therapies. Their work highlighted the rapid advancements in scientific knowledge and emphasized our growing responsibility to ensure equitable access to these developments.

The transition from pediatric to adult care is one of the most vulnerable points in the sickle cell journey. Shannon Leahy, BSN, RN and Emily Fusco, LSW spoke with such heart about helping young people navigate that shift. Their commitment to continuity reminded me that transitions are not just clinical handoffs — they are moments of trust.

Dr. Nirupama Parikh grounded us in relationship‑centered communication. She reminded us that being believed is often the first treatment a patient receives — and that trust is built one conversation at a time.

Our keynote speaker, Dr. Charlesse Pondt‑Huannou, offered a powerful vision for what a Sickle Cell Center of Excellence can be when systems, leadership, community-based organizations and equity come together. Her message resonated deeply: excellence is not a building. It is a system. A commitment. A community. With support from Karen Macey‑Stewart, she helped us imagine what sustainable, patient‑centered sickle cell care could look like across New Jersey.

The heart of the morning featured our patient and caregiver panel, whose stories were courageous, honest, and profoundly instructive. They reminded us that while sickle cell disease is inherited, many of the barriers patients face are not. We have a responsibility to dismantle those barriers. They urged us to listen without defensiveness, reflect without making excuses, and act with intention.

As I sat with their words, I found myself returning to the idea of a center without walls — a model rooted in community, shaped by collaboration, and guided by the voices of those living with sickle cell disease. This is how the movement began in 1971. And this is how we will continue it today.

As I left the symposium, one question stayed with me:

What can I do differently on Monday because of what I heard today?

For me, the answer begins with listening more closely, partnering more intentionally, and remembering that excellence in sickle cell care is built one interaction at a time — in exam rooms, emergency departments, infusion centers, and every moment when a patient decides whether they can trust us.

Today strengthened that commitment. And it reminded me, once again, that the work of healing is always a collective act.

“Our work began in community, and it will be sustained by community.” — Dr. Charles F. Whitten, Co-founder of the Sickle Cell Disease Association of America (SCDAA)
Founder of the National Sickle Cell Center, Pediatric hematologist, Detroit