Sickle cell patients come seeking care. Doctors treat them as drug-seekers.

The result: Sickle cell patients were written about negatively 14 times more often than patients with no factors associated with stigma. They were written about as negatively as patients diagnosed with opioid use disorder. Most do not have it. Their doctors write about them as if they do.

Need for pain medication is treated with suspicion

Credit: Handout

Credit: Handout

The stigma is layered. Sickle cell patients carry the weight of being Black in a healthcare system with documented racial bias.

They carry the weight of having a painful, poorly understood disease. And on top of that, they carry the weight of opioid stigma — the assumption that anyone who needs strong pain medication must be seeking it for the wrong reasons.

When a patient has been labeled in their record, the label follows them. The next clinician reads it and starts from suspicion.

Research shows that clinicians who encounter notes with stigmatizing language prescribe less pain medication — not because the patient needs less, but because the bias has shaped their thinking before the patient says a word.

What do you do, living with that? You stop showing up until you absolutely have to.

We see it in the data. One hospital in Illinois recently reported a 45% no-show rate for outpatient sickle cell appointments. Average length of stay for sickle cell admissions runs 20% to 30% longer than what insurance reimburses — not because the disease is unmanageable, but because it has been mismanaged for years before the hospitalization, in all the appointments that never happened.

How Georgia is addressing treatment and care needs

Georgia is one of the few states beginning to take this seriously. The state passed House Bill 334, the Sickle Cell Disease Protection Act, and the Department of Community Health is funding a new model of value-based, specialized care for the Medicaid sickle cell population — a recognition, before most of the country, that the standard approach has not been working.

What that model has to look like is no longer a mystery. The National Academies laid it out in 2020: a coordinated, team-based medical home that meets patients where they are; that addresses medical, behavioral, functional and social drivers of health together; that earns engagement rather than demanding it. We know what to do. The question is whether we will do it.

Distrust does not stop at the hospital door. It follows patients into new programs, too. When you have spent years being labeled, dismissed and undertreated, you do not suddenly trust the next person who calls. Why would you? Trust has to be earned. That is not a soft goal — it is the clinical intervention. Without it, everything else falls apart.

The cycle the JAMA study describes is precise: bias produces avoidance, avoidance produces crisis, crisis produces more bias. Interrupting it requires clinical competence, cultural humility and the public sector courage Georgia is beginning to demonstrate — to invest in care that reflects what the evidence has been telling us for years.

This World Sickle Cell Day, June 19, patients are telling the same story they have told for generations — only now a peer-reviewed journal has put a number on it. The data is in the record. The question is whether we are willing to write a different kind of note.

Michael V. Smith, M.D., is the founder and CEO of Marti Health, an Atlanta-based physician-led organization operating the country’s first value-based specialized medical home for sickle cell disease, under contract with the Georgia Department of Community Health.