The Hero of Hope Award, presented at AKF's annual gala, The Hope Affair, is one of the most prestigious awards in the kidney community and is given to someone living with kidney disease and making a difference in their community. We recently interviewed 2023's recipient, John Bayton, to learn more about his experience.
Advocacy has been a part of your life for a long time, even before you were diagnosed with kidney failure. What issues are most important to you and what makes you motivated to advocate for those issues?
My main motivation stems from time spent in dialysis centers, where I witnessed and heard from people who felt that they did not have a voice/stake in their care. This was especially true of the elderly and people of color who expressed concerns with their level of care, lack of information and the feeling of not having any control or ability to express their desires. This led me to become an advocate for those I felt had no voice. It continues to be my primary motivation. My primary areas of advocacy are currently focused on increasing education about and access to home dialysis, increasing education and access to transplantation, and fighting for continued research and development for dialysis/transplant devices and treatments.
What do you wish people knew about kidney disease that they don't generally know?
This is a complicated question. There are a lot of FAQs people need to know about kidney disease. However, the first among them is probably that kidney disease exists! All too often, I find that the general public has little to no understanding of kidney disease. So before we can truly address the implications and challenges of kidney disease, I feel that we need to better educate people about kidneys.
Why did you decide to get involved with AKF as an Ambassador?
After my first transplant failed, after seven years, I had to transition back to in-center dialysis. I was surprised that absolutely nothing had changed in those seven years. I was more amazed when I discovered that there had been little to no innovations since the inception of dialysis.
This made me angry because I wanted options, and I really did not have any. This motivated me to search for organizations that would allow me to add my voice to call for change. When I reached out to AKF, they answered, and from that moment on they have continually provided me with a multitude of opportunities to add my voice to the fight for better dialysis treatments and the call for innovation.
How did you feel about being selected for the 2023 Hero of Hope award and how was your experience at The Hope Affair?
It was amazing and I was so surprised when Ben contacted me to inform me that I had been accepted. The night of The Hope Affair was very surreal, and when I stepped on stage to receive the Hero of Hope Award, it felt like an Oscar's moment. It was truly a highlight of my life.
What's next for you as an advocate?
Next steps for me include expanding my advocacy efforts. In 2023, I began serving a three-year term on the Organ Procurement and Transplant Network's Minority Affairs Committee, became affiliate member and 2023 recipient of the CELE'S Champions Award for the American Society of Nephrology, joined the University of Manitoba's Sexual Orientation & Gender Identity Advisory Board and became the newest member of the Kidney Research Institutes Patient Advisory Committee, a collaboration between Northwest Kidney Centers and the University of Washington Department of Medicine.
And, of course, I plan to continue working with the American Kidney Fund.