By Genoa Barrow | OBSERVER Senior Staff Writer
The loss of a childhood neighbor put Oyebimpe Adesina on a path to preventing others from suffering a similar fate. Her native Nigeria has one of the world’s highest rates of sickle cell trait and she has made it her life’s work to find solutions for people living with sickle cell disease, which impacts millions globally.
Today Dr. Adesina serves as an assistant professor in UC Davis’ clinical internal medicine division of hematology and oncology. She also leads the region’s only specialized adult sickle cell disease clinic at the UC Davis Medical Center. Her primary focus is treating adults who experience acute and chronic complications of sickle cell disease.
According to the U.S. Department of Health and Human Services, approximately 1 in 13 African American babies are born with sickle cell trait and 1 in 365 Black babies is born with sickle cell disease. Dr. Adesina estimates the number of people in the Sacramento region with sickle cell disease at between 400-500.
“We are providing care at our center for about 350 of those adults and children,” she said. “I think we’re a little over 100 children and then a little under 250 adults. Those are very rough estimates because there’s a lot of migration and whatnot around various counties in California.”
The numbers also are approximate for another reason.
“People may or may not want to disclose that they have sickle cell trait or sickle cell disease,” Dr. Adesina said. “It’s deeply personal. I think sometimes it’s lack of information or sometimes misinformation about what that means, having sickle cell trait or disease. Sometimes people feel a lot of stigma around that, so even if they know their status, which many people don’t, they don’t necessarily want to disclose that.”
Similarly there was, and is still to some degree, shame in the Black community, around another blood-related disease, HIV/AIDS. Dissimilarly, over the years, there have been countless campaigns to educate people about what HIV/AIDS is and isn’t.
“Stigmatization is also very prevalent in something like HIV/AIDS, where people feel like they’re blamed for having sickle cell disease, whereas they had nothing to do with it, it’s genetic. From my experience, growing up in Nigeria, it was highly stigmatized and I know that that’s still the case,” Dr. Adesina said.
For her, the work is highly personal and dates to her earlier years in Africa.
“The loss of our neighbor got me thinking about it. I was very young at the time and I don’t think I fully appreciated it until I was in undergrad or medical school,” she said. “I felt like there was little information or they had very little information that could maybe have benefited their family and maybe that little girl didn’t have to die. It took me a while to understand or appreciate the significance of that.”
Dr. Adesina came to the United States in 1998, after her father’s death. Her older brothers already had immigrated. The political climate was volatile and local universities were closing.
She relocated to Southern California and attended Cerritos College for two years before transferring to UC Berkeley and graduating in 2002.
While in college and medical school, Dr. Adesina returned to Nigeria to spend summers at a teaching hospital in Lagos, her hometown.
“It’s still home,” she said.
Over the years, Dr. Adesina has had the chance to share her knowledge with medical professionals back in Africa, particularly from her area of expertise, which is bone-related complications of sickle cell disease.
‘First’ And Foremost
At Dr. Adesina’s spearheading, UCD’s sickle cell center recently got an influx of funding from the State of California, by way of Networking California for Sickle Cell Care. UCD is getting a share of $15 million over four years that will allow it to better provide complex care. There are 12 clinics, including ones in Alameda, Kern, Fresno, San Bernardino, Los Angeles and San Diego counties, where sickle cell disease is prevalent. The latest clinic, in San Bernardino had its grand opening April 14.
“My boss has been taking care of people with sickle cell disease for almost 30 years, based at UC Davis the whole time. I joined a little over a year and a half ago and there was this opportunity for us to partner with Networking California for Sickle Cell Care,” she explained.
The goal of the statewide project is to decrease the mortality and morbidity rates for Californians with sickle cell disease through increased access to a regional network of adult sickle cell disease skilled subspecialty clinics. According to organizers, California lacks knowledgeable providers and the absence of sickle cell disease clinics with proper care resources has led to ER visits and hospitalizations, at an estimated national cost of $2.4 billion annually. In California, data for 2014-16 from the Office of Statewide Health Planning and Development indicated costs for hospitalization and ER visits for adults with sickle cell disease exceeded $226 million.
Dr. Adesina said that as dedicated as the team that was in place when she came to the clinic was, they lacked resources and were “spread pretty thin.”
“A lot of patients were kind of just scattered here and there and everywhere, so we put a lot of effort into bringing patients back into the fold.” she shared.
The NCSCC funding allowed for the hiring of a second physician, sickle cell nurses, a practitioner, a licensed clinical social worker and a community health worker.
“We try to, as much as possible, make that funding go a long way in providing care for our patients,” Dr. Adesina said.
Providing care includes improving education within the UC Davis community. Dr. Adesina teaches medical students, residents and fellows, and a nurse practitioner targets nurses, other nurse practitioners and advanced practice providers.
“Even though it’s the same disease, we all bring a different perspective to care based on our training and our backgrounds. We’re trying to cover all of our bases because we realize that sometimes there’s a lack of empathy, a lack of understanding. Many people with sickle cell disease are lumped into or put into a box of ‘Oh, they’re all drug seekers or pain meds,’ which is actually very far from the truth. We do a lot of teaching around having a different perspective, humanizing the care for people living with sickle cell disease and just trying to increase education and awareness for our peers at UC Davis and then kind of branching that out hopefully within the community.”
The team hosted a sickle cell awareness day in October, where it also was publicized to the community that there’s a regional clinic where people can receive care.
“The easiest way to reach the community is through our patients’ families,” Dr. Adesina shared.
Dr. Adesina doesn’t want patients to be intimidated by the clinic’s location within UCD’s cancer center.
“We’re in a cancer center, but we’re a sickle cell clinic. Don’t be scared,” she said.
She gives kudos to those she works alongside.
“It’s a team approach. We love what we do. It’s a big challenge, but we feel really fortunate to be in this space. We want as many people in the community to know about us so they can come or bring their family members. We’re fully staffed now so we’re ready to provide that care that’s been lacking for so long.”
Leading By Example
Dr. Adesina is a leader in creating equity in the sickle cell space. Culturally competent care is crucial, she said.
“I do think that that has been one thing that when I was in training, it was not spoken about enough, and so then when you’re in the real world, you see that there’s so many barriers to care that people with sickle cell disease struggle with day in and day out. A lot of these things I kind of learned on the go. I think the biggest tool that I have in my armamentarium for combating inequity and the disparities in care is just my voice really,” Dr. Adesina shared.
“In any talk that I’m giving about sickle cell disease to the community here at UC Davis, I bring that up. It’s not that people with sickle cell are trying to be difficult. It’s just been a very difficult, challenging road for many of them. So when they come in frustrated and angry and not wanting to trust the medical system, I have to remind myself that it’s not personal. It’s not about me. There’s a whole history behind that trauma.”
Listening, and actually giving a damn, matters.
“How do you listen to your patient and how do you hear them out? How do you try your best to educate without alienating? How do you provide care in a way that is culturally appropriate?” Dr. Adesina said.
“I didn’t grow up in the African American community, so I don’t have that perspective. When the patients are coming in, I need to understand dynamics within their families.”
She spends a lot of time trying to get to know her patients.
“There’s so much more to their lives than sickle cell disease, but I do think that that’s been such a big focus where they’re not known as anything other than sickle cell disease patients.”
Dr. Adesina asks questions about their families, their backgrounds and their day-to-day responsibilities.
“I can appreciate some of their struggles and it just informs the care that I provide,” she said.
“When I do have the opportunity to speak with students, I let them know, hey, it’s really important that you get to know who these patients are as people. Sickle cell is part of their lives, but it’s not the only part of their lives. Many of them are parents, and young parents at that. Many of them are in school or trying to get back to school. Many of them are working on providing for their families. I don’t know if that truly breaks down barriers, but I do think that it infuses some compassion into the care that’s provided.”
A memorable moment for Dr. Adesina came before her time at UCD, while working with a patient who was a single mother.
“It was just such a struggle to get her to appointments, it was a struggle for her to get her meds. Everything was a struggle,” she recalled.
A nurse informed her that the patient was having a difficult time securing a babysitter for an autistic child. The nurse went “above and beyond” to find a way for them to conduct in-home visits.
“That completely changed the woman’s outlook and she was more at ease and not so worried about her child,” Dr. Adesina said. “Only then was my patient able to focus on her own health. I realized it wasn’t anything that I did or said, it’s the fact that that nurse was able to find that particular resource that essentially changed our patient’s life. Really, it makes you humble. It also makes you learn that sometimes your medical expertise is actually not what’s needed. It’s more of being aware of the psychosocial needs and trying to find the resources to support that.”
Sometimes Dr. Adesina is the first Black doctor patients have had.
“Some of my patients have gone all their lives and have never seen a Black woman as a physician,” she added.
She’s been able to build particular rapport with young African American women and women, who like her, come from Africa.
“Our experiences can be different, but I do think what makes the biggest difference for me in the way that I choose to practice is getting to know patients and where they’re from. Just listening, without judging and just trying to lead with compassion.
“Sometimes, because of my background, I find myself using a lot of medicalese or medical terms. I have to dial it back and have to remind myself that ‘No, this is actually not what’s important. What’s more important is asking them how they are feeling. What are they feeling about their health?’
Dr. Adesina takes any opportunity to mentor young people entering the health and medical field, especially those who say they’re interested in sickle cell disease.
“It’s one of my absolute favorite things to do,” she said. “As a Black woman in this space, I do have a lot of opportunities to use my voice.”
Dr. Adesina hopes sharing her passion for what she does and who she serves will encourage others to join her.
“I definitely want more people of color,” she shared. “We come with a different perspective. We can impact so many lives, just by providing care in this space.”
This article is part of a series that highlights sickle cell’s impact on the African American community and how medical professionals are working to remove barriers to care and ensure that patients get the treatment they deserve.