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Dr. Andrew O’Brien
Director, Adult Sickle Cell Disease Program, Indiana University Health
Dr. Andrew O’Brien’s interest in blood disorders started when his mother, who was an OB-GYN, was diagnosed with leukemia as he was applying to medical school.
“We sort of coped by intellectualizing and trying to learn about it,” he said.
That set him down the path of hematology. After medical school, a combined internal medicine and pediatrics residency brought him to Indiana University Health about a decade ago. And that’s where his passion for sickle cell disease was born.
Sickle cell disease is a group of inherited red blood cell disorders, according to the U.S. Centers for Disease Control and Prevention. It can cause serious complications, including severe pain. In the United States, sickle cell disease primarily affects African Americans. The patients have historically been underserved and stigmatized.
O’Brien told IBJ he noticed a drastic difference in the level of care between children and adult patients with sickle cell disease.
When children with sickle cell came into the hospital, they were treated with compassion and sympathy, and their pain was managed appropriately, O’Brien said.
For adults, that was often not the case. Some patients’ pain was dismissed, and the patients were denied pain medication that would make their suffering more bearable.
“And the more I learned about it, the more I learned about the incredible impacts of both individual and systemic racism with sickle cell disease,” he said, “I decided I had to try to do something about it.”
After residency, he did a hematology fellowship at IU Health. About three years ago, he started as faculty at the Indiana University School of Medicine. And about a year after that, he took over as director of the adult sickle cell disease program.
“Dr. O’Brien has been instrumental in structuring the SCD program specifically designed to include support staff of not only doctors, but also nurses, social workers, research personnel, mental health experts and other areas of expertise to help patients advocate for themselves no matter the institution,” his nomination reads.
Sickle cell disease lasts a patient’s entire life. Many people end up dying from it. So their care needs to follow their life span, O’Brien said. Because sickle cell disease is a blood disorder, it affects the whole body.
“The implications are far-reaching and really need an expert team that knows about sickle cell disease to wrap around them to provide all the care that they need, and then also just for people to believe them,” O’Brien told IBJ. “Every single one of my patients tells me about times that they’ve been dismissed or [been told] that they can’t possibly be feeling the way that they’re feeling or experiencing what they’re experiencing—every single one.”
With that care in mind, O’Brien has been pursuing the creation of a robust Lifespan Sickle Cell Disease Center of Excellence alongside his colleague Dr. Seethal Jacob, who cares for children with the disease.
“We’re always going to be growing, changing, trying to add resources, but in principle, we are working together as a single group to ensure life-span comprehensive care as best we’re able with the resources that we have,” O’Brien said.•
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