Learning Network for Sickle Cell: From Idea to Reality
Above: The author’s twin sons graduated last spring from the University of Cincinnati.
2020 has been devastating for all of us, but this holiday season, I have something to be extremely hopeful about.
The Office of Minority Health at the U.S. Department of Health and Human Services has awarded the American Society of Hematology $1 million in 2021 (renewable in 2022) to develop and implement a new national learning community and clinical data collection platform for sickle cell anemia.
As the mother of three sons, including twins with sickle cell, I am grateful for the strategic role the American Board of Pediatrics (ABP) played in establishing the Learning Network for Sickle Cell. This grant will help draw attention to the needs of people living with sickle cell and provide a way for physicians, other health care providers, and families to share limited information, limited resources, and best practices about this disease that is most prevalent in the Black/African American community.
The CDC reports that one in every 365 Black or African American newborns has sickle cell disease, and one in 13 carries the genetic trait. Many children with sickle cell live a long way from centers that specialize in treating the disease.
This is my story.
Diversity: A Seat at the Table*
Five years ago, the ABP invited me to a meeting with 23 other parents, older pediatric patients, and pediatricians to discuss how we could work together to ensure that concerns of families were considered in the certification process.
At that first meeting, I was excited to hear about collaborative learning networks that focused on improving outcomes for other chronic pediatric conditions, including cystic fibrosis, cardiology, and inflammatory bowel disease. I learned how these networks brought together hospitals, doctors, scientists, parents, and patients and achieved improved outcomes for patients. And I wondered, why wasn’t there something similar for sickle cell?
Dr. David Nichols, ABP President and CEO, heard my question and concern. We both were aware of health inequities, which could explain why less money and resources had been devoted to helping find cures or treatments for patients with sickle cell.
Inclusion: Having a Voice and Contributing Our Unique Self*
As a volunteer member of the ABP’s Family Leadership Committee since 2015, I am grateful to be part of an organization that cares about all children and young adults and an organization that is working to improve health inequities.
I felt people were hearing my voice. The ABP sponsored and helped facilitate conversations between top experts in Sickle Cell and Learning Networks at a meeting in September 2018, Focus on Sickle Cell Disease: Improve Care and Outcomes. This meeting brought together doctors and parents in the Sickle Cell community. Although many initiatives are underway to improve care and outcomes for patients with Sickle Cell Disease, significant gaps remain. We discussed strategies for improvement, including a learning network for Sickle Cell Disease.
Since then, I have been given opportunities to share my family’s story and experience of living with sickle cell, and my personal experience on dealing with the stigma of emotional health issues when dealing with chronic disease that other African Americans may share. There have been various opportunities to voice concerns and struggles that sickle cell families face to make sure our children thrive. Being able to share our family’s story is priceless.
Belonging: Having Your Voice Heard and Action Taken*
My twin sons are now college graduates. I strongly believe that, because of the lifespan Learning Network for Sickle Cell, there will be improved outcomes and treatments so that they — and all sickle cell patients — can continue to thrive.
Thank you, ABP.
About the Author
V. Robyn Kinebrew is a volunteer advocate for children with sickle cell disease. She and her husband, Kevin Kinebrew, are the parents of three sons, including twins with sickle cell disease who recently graduated from the University of Cincinnati. She has been active with numerous sickle cell advocacy teams, including those at the Cincinnati Children’s Hospital Medical Center and the six-state sickle cell network, Sickle Treatment and Outcomes Research in the Midwest. She is a member of the ABP’s Family Leadership and the Conflict of Interest committees. Although she stayed at home with her sons while they were growing up, she currently works as a Human Resources Analyst for the City of Cincinnati..
*LaToshia Rouse (another member of the ABP Family Leadership Committee) offered these three definitions that describe how the ABP is making a difference for underrepresented minorities.