Pictured is Daniel Lee, second from the left, during a hour-plus boat trip to Bukasa to visit patient homes with Maddie Kitts MS'25, bottom right, with fellow researchers that include Dutch medical and UNC students and staff from Kalangala Health Center IV in Uganda.
Published September 17, 2024 under Student Stories
On many days this summer, Daniel Lee’s only mode of transportation was a small, motorized canoe that traveled among islands in Uganda’s Lake Victoria. Lee, a Duke senior majoring in biology with a minor in global health, spent eight weeks in Uganda working with the Kalangala Health Centre IV Sickle Cell Clinic, the sole clinic offering specialized care for the disease to people living among the 84 islands in the district.
Sickle cell disease, a disorder in which red blood cells take on a sickle shape, affects around 300,000 children in Africa, causing problems with blood flow and chronic pain. Kearsley Stewart, Ph.D., a professor of the practice of global health and cultural anthropology at the Duke Global Health Institute, has worked for several years with the Kalangala clinic to improve awareness of the disease and access to treatment, and she has frequently organized students to participate in community-based field projects through the clinic.
Lee, who aspires to be a doctor, saw the effect of the disease on children while shadowing Michael Deel, M.D., a pediatric oncologist who previously worked at Duke Children’s Hospital. He recalls how children in the hospital would press a button to call for staff when their pain became unbearable. “Sometimes, the buttons were pressed hundreds of times through the night,” he says. “They had a distinct cry when you knew they were in so much pain. I asked myself what else I could do to help patients with the disease.”
In Uganda, Lee worked with center staff to provide treatment for patients and tested blood levels for fetal hemoglobin, which can be a sign of anemia. His fieldwork was funded by a Deans’ Summer Research Fellowship from the Trinity College of Arts and Sciences, DGHI’s Paul Farmer Independent Research Grant and a grant from the Hubert-Yeargan Center for Global Health for laboratory supplies.
We spoke with Lee about what his experience in Uganda taught him, the ways he traveled to visit patients and how playing the violin became a surprising part of the trip.
What was the focus of your research?
My primary goal was to identify barriers and facilitators to a newly introduced treatment for sickle cell disease called hydroxyurea [the medicine inflates blood cells so they aren’t sickle shaped, which improves blood flow and decreases illness complications]. I did interviews with clinicians, healthcare workers and patients to understand what could prevent them from taking the treatment. I also worked with Joel Kibonwabake, the chief clinician and director of the centre’s sickle cell clinic and a longtime collaborator of Professor Stewart’s.
What are some of the barriers patients face when it comes to care?
The biggest are finances and transportation. The health centre is the only one that serves the district and 84 surrounding inhabited islands. Some people travel by boat and boda bodas [motorcycles] for care. There’s also stigma. Patients hide their diagnosis or don’t want to be seen taking medication because others believe you’re bewitched if you have the disease.
Another barrier is how caregivers provide care. Some parents have multiple children and mix up the medication schedule for them. Before I went into the field, Dr. Kibonwabake told me about a pediatric patient who recently died from the disease. The mom was in denial about the child’s condition despite many efforts by the clinician who provided her the treatment. This summer was an emotional experience for me that made me want to better understand the preventative ways to address sickle cell.
Daniel Lee, far right on the second row,...
How did you get around to see patients?
We’d wake up early, around 7 a.m., and meet a man at one of the smaller docks in Kalangala. His wooden canoe has a motor; it can fit six people and our equipment for testing patients in their homes. It would take about 45 minutes for our first trip to one of the islands, Kachanga, and a little more than an hour to the second island, Bukasa.
On one trip, it did rain and any small wave that came, we went about a foot in the air each time. Sometimes when we slowed down, the boat would begin to sink and water would come in. The driver was constantly scooping out water. It shows you how much patients go through to get treatment, sometimes once every three months.
You’ve been playing the violin for several years at the church you attend in Raleigh. How did that talent fit into your time in Uganda?
One of the medical volunteers at the centre is a music producer who goes by the name “Dr. Cesar,” and we bonded over music. He has a studio in the capital city, Kampala, and he was working on a song. He didn’t want to use an artificial violin sound and asked me if I would play it. We paid a violinist in the city so I could borrow his instrument to play the part. I even added a few more sections to the song, which is not released yet.
What did your time in Uganda show you?
Although I was there for research, it taught me about the importance of addressing patient needs in the present, and how it’s beneficial for me because I want to be a physician someday. Also, seeing Drs. Stewart and Kibonwabake’s relationship, and what they’ve accomplished after so many years inspired me. I promised everyone in Uganda I would return. I don’t want to be a student researcher that stays for two months and leaves. I’m going back when I have more education and a wider medical skillset to better care for patients. This is now my local area, my second home. I’m glad DGHI gave me this opportunity.
