Hematologist is improving care experience for people with sickle cell disease
When Alex Boucher, MD, became director of the pediatric and adult sickle cell disease programs with M Health Fairview, he had a goal of expanding access to care for people with red blood cell disorders, like sickle cell disease and thalassemia. But Boucher, who is also a professor with the University of Minnesota Medical School, didn’t simply want to see more patients.
Boucher, a hematologist, wanted to give people a cohesive care experience from childhood through adulthood. He wanted to focus on providing a supportive, anti-racist care experience that treats each patient as an individual with a life and goals that don’t have to revolve around a disease. He also wanted to give his patients access to clinical studies and the latest treatments available.
“We are trying to change the way we approach care because having more patients in the hospital isn't helping the system or our patients,” he said. “But offering person-first care and family-based care feels like it's paying dividends in trust and engagement.”
That’s important because people with sickle cell disease haven’t always been treated well. It's a disease that disproportionately affects Black people. Patients in health systems nationwide frequently encounter bias in getting care. That can prevent people from getting the care they need and deserve.
Sickle cell disease is a genetic condition that causes red blood cells to become sickle-shaped, rigid, and sticky. Without treatment, these cells only last three to six weeks. In contrast, healthy red blood cells are round, flexible, and usually last three or four months. People with sickle cell disease often experience fatigue, pain, swelling, and frequent infections. The condition can also slow growth, cause vision problems, and lead to cardiovascular diseases.
Boucher shares more about his team’s approach to care.
More than a disease
Boucher wants patients to see value in coming to the clinic, so he starts each appointment by asking what else is going on in their lives. This helps him understand any needs and barriers that he may be able to help with. He wants to hear about career success, new apartments, and relationships.
He might ask what patients want to do in the next six to 12 months. The only rule is it can’t be anything related to sickle cell disease. He finds this helps patients remember that there’s more to life than taking pills and going to doctor’s appointments. In turn, this helps give people a reason to stick with their care plans and see their medical appointments as beneficial.
“We found in doing that, we've reduced emergency department visits and improved our outpatient attendance at appointments,” Boucher said. “But it's just a more genuine visit.”
A smooth transition
Sickle cell disease is a lifelong disease, but many patients find themselves navigating a new health system when they age out of pediatric care programs.
“Pediatric care has a small-town feel where people get you where you need to go, they'll go out of their way to help you,” Boucher said. “And the adult side is built like a superhighway that you’re expected to know how to navigate.”
But M Health Fairview prides itself on smoothing out that transition. While patients do go to M Health Fairview Masonic Children’s Hospital for pediatric care, they encounter some of the same people and a similar approach in the adult clinic located at M Health Fairview Masonic Cancer Clinic. Our team sees more than 200 people from birth throughout their lives. We care for three-quarters of adults in the metro area who have sickle cell disease. To ease the care process, Boucher encourages young adult patients to bring their parents along as long as they like.
“I'm seeing you a couple times a year,” Boucher said, “Your family is there 365 days a year. I want those parents there because they're advocates.”
Access to advanced care
Another advantage of the M Health Fairview system is that we offer a high standard of care, and patients can participate in clinical trials if they want to.
We have access to clinical trials from phase one trials, which are usually first-in-human or first-time drug trials, all the way to curative therapies. The physicians who treat sickle cell disease are all physician researchers who aren’t satisfied with as-is treatment options and are helping advance current standards of care.
“Status quo isn't enough, Boucher said. “We're always trying to be progressive and use the evidence that's available. We can individualize care in a way that is best oriented to the person in front of us versus giving everybody the same treatment plan.”
Get more information about the sickle cell disease program at M Health Fairview and request an appointment by visiting the sickle cell disease page.
