When Lori Vick speaks about sickle cell disease, it is from more than 30 years of nursing practice, 10 years of grounded research, and a drive to elevate care through education—and deep compassion.
As an assistant professor at the University of South Carolina College of Nursing, Vick is advancing national efforts to train nurses to better understand and treat patients living with sickle cell disease.
At the heart of that effort is the Sickle Cell Nursing Boot Camp. Universities and organizations collaborate on this training initiative that brings together nurses and nurse practitioners from across the country—and the world—to gain specialized knowledge in treating this chronic and often misunderstood condition.
“Nurses, doctors, scientists, all these people have spent time learning about the pathology and best practices of sickle cell disease,” Vick says. “And by using evidence we can better prepare nurses to understand what is required to give appropriate care.”
Sickle cell disease is an inherited condition that causes red blood cells to become misshapen, blocking blood flow and leading to pain, infections and organ damage. It’s a lifelong illness that primarily affects people of African ancestry in the United States but can be managed with proper care. In the U.S., about one in 365 Black babies are born with the disease, having inherited a sickle cell gene from each parent, and nine out of 10 people living with the disease are of African ancestry, according to the National Heart, Lung and Blood Institute.
One of the first challenges in improving sickle cell care comes from the time constraints
of earning a degree.
“Unfortunately, in nursing education, sickle cell care gets about maybe half an hour,
if you’re lucky, in their entire studies,” Vick says. “At some point we have to say,
OK, this is how much time we can afford to spend.”
The boot camp, which relies on funding from donors to cover travel expenses of attendees, goes beyond a few days of training. Vick and her colleagues provide follow-up support for at least a year, which creates a network of empowered nurses equipped to advocate for their patients and educate their peers.
Participants are encouraged to take what they’ve learned and implement it in their own clinical environments. One nurse from Canada reported her hospital plans to integrate the boot camp's content into its new nurse training.
“One nurse wanted to cure sickle cell from the experience, she was so excited about it,” Vick says. “Part of our job is helping them set realistic expectations.”
Disparities in care for patients with sickle cell disease remain a persistent challenge. Stem cell transplants, the only treatment that can potentially cure sickle cell disease, require patients to remain near major medical centers for months. That reality places a heavy burden on families and often excludes patients in rural areas or those without financial resources.
“Just think about what it means for someone to have to relocate or stay in temporary housing for months,” Vick said. “The people who live near major sickle cell centers or university medical centers are more likely to receive that treatment. We haven’t done a study on it, but logically, you can see the gap in access.”
A global mission for local care
Vick has also shared her expertise internationally. She has traveled to Brazil to provide training on the psychosocial dimensions of chronic disease, particularly mental health support for those living with sickle cell. Her colleagues recently hosted a boot camp in Abuja, Nigeria.
Her previous trip to Brazil revealed something powerful: a single presentation slide showing global sickle cell prevalence became a highlight of her talk. Attendees eagerly snapped photos of it, grateful to see their country recognized in a broader conversation.
“I found out that that global perspective and in particular identifying and highlighting their own country was quite valuable to them,” Vick says.
In addition to pharmaceutical industry and USDA support of the boot camps, institutions such as St. Jude Children’s Research Hospital, the University of Tennessee Health Sciences Center, Duke University and others have contributed experts and resources.
Vick hopes to continue building connections in the years ahead. She calls the next five to 10 years critical, as sustainable funding is essential to allowing the boot camp to reach more communities.
“That's not really very far into the future,” she says. “We just hope that we're able to find a way to sustain it until we have everyone providing care to to individuals with sickle cell disease with this essential information.”