Lyfebulb–CVS Kidney Care Innovation Challenge honoree empowers dialysis warriors through education
By Jesse Roach, MD, Senior Medical Director of Health Equity, CVS Kidney Care
Chronic kidney disease (CKD) is one of the prime examples of health inequities in this country. According to the National Kidney Foundation, Black people are more than three times as likely, and Hispanic or Latino people are 1.3 times more likely to have kidney failure compared to white people.
Minority populations are also less likely to receive state-of-the-art CKD treatments. Black and Hispanic or Latino patients are 30 to 40% less likely to get a kidney transplant or receive home dialysis than their white counterparts.
By launching the Lyfebulb — CVS Kidney Care Innovation Challenge, we surfaced new ideas to help close this gap in care, change the status quo, and engage the kidney community to surface solutions for a healthier future. The innovations presented by each of our 10 finalists demonstrated true potential to improve equitable outcomes for all those living with kidney disease. While we were guided by many criteria as we evaluated our finalists’ ideas, we sought out concepts that demonstrated a strong connection to the real needs of kidney patients — underscoring CVS Kidney Care’s own efforts to place people at the heart of everything we do.
This commitment to patient-centric care shone through in all our finalists, but Sharron Rouse especially, whose own journey with chronic kidney disease led her to launch Kindness For Kidneys International. The dedication and support she provides to the kidney community each day is what won Sharron and her team an unprecedented Honorable Mention, recognizing their efforts to address barriers to care that make managing kidney disease difficult for many patients.
We sat down with Sharron to learn more about how her organization is changing the face of kidney disease through education, encouragement, and empowerment of kidney warriors and their families.
Q: Through your own kidney transplant journey, you've built a unique movement to empower “Dialysis Warriors.” Can you tell us more about how your experience influenced this mission?
Rouse: In September 2006, I woke up with swollen legs and after going to the emergency room, I was told that my kidneys were failing. While I was in denial, I ultimately became a Dialysis Warrior for almost two years until receiving the gift of life, my kidney transplant, from my sister. For me, the day I walked into a dialysis facility changed my life forever. I was a young mom in my 30s, and the process didn't register with me. I kept thinking, “How is this my life right now?” But as I looked around and saw the people sitting in the chairs beside me, I thought, “Why didn't I know that this was going on?” This was part of the lives of people that I knew. This was now my life, my story, someone young, newly married, with a child. I sat in the dialysis chair asking myself, “What can I do to help the people sitting next to me?” Most of the people in the room looked like me, they were African Americans, and it bothered me that we weren't having conversations with our family members, even those who might be second or third generation Dialysis Warriors. I vowed on that day that I would not let my journey happen in vain. Something had to be done. People need to know what goes on in dialysis facilities. My sister and I celebrated the fifth anniversary of our transplant by launching Kindness For Kidneys International.
Q: What is the goal of Kindness For Kidneys International?
Rouse: Our goal is to provide education for kidney patients, an area that we all need a little more understanding of. While there is a plethora of resources out there, I never felt a connection to what was available or knew how to apply it to my everyday life. When you receive a kidney disease diagnosis, it really is a traumatic event. People need encouragement from their care partners and family members to make it through the journey. I know there were days that I thought I couldn’t do it anymore. But my village showed up in a strong way. One thing that I say to patients all the time is that we are in this together. It's not up to the doctors to decide your fate. This is a partnership. And the only way you can do that is by being empowered, connecting with other warriors, and being educated so you can speak and make informed decisions for yourself and your village.
Q: As you mention, a major part of Kindness For Kidneys International’s goals is empowerment through education. What resources did you feel were lacking in your own health care journey?
Rouse: I can think of many obstacles my sister and I experienced with our own transplant journey. The date of our transplant was actually the fifth date that we had scheduled, and to even get to that point, we had to be really forceful in our approach. I would probably still be on the transplant list right now otherwise. We were denied several times, and it took us going through several processes. For example, my sister had to get two bone marrow biopsies to prove that she was a viable candidate because her hemoglobin levels were being questioned throughout this process. We saw many difficulties like this firsthand, and I speak to families all the time that just say, “Forget it. If I have to go through all of this, maybe I'm just supposed to stay on dialysis.” It is a lot to keep getting denied, following the rules that may change in each hospital, where one will put a patient on the list, but another won't. This is why when we work with families, we tell them to keep trying, to go somewhere else, to not give up. People have to be empowered to be part of this process. Just giving that information alone has been paramount for the families we support.
Q: What is Kindness For Kidneys International’s biggest plans following the Lyfebulb – CVS Kidney Care Innovation Challenge? Where do you see yourself in a year?
Rouse: Wow, that's a loaded question! Within the next year, I want our patient education program to be complete. Our program is for patients, by patients, so working to make these connections and band people together is very important. One thing I gleaned from the Challenge was the number of different perspectives and resources we can include as part of our approach to developing the program. I'm very excited to continue connecting with the other finalists in the future. It is so important to make these connections in our development stage and incorporate the learnings we gather as we introduce the program in the market. We've had the opportunity to speak with so many different companies and patients, and we hear every day that they are ready for what we’re building. They also see Kindness For Kidneys International as a way to empower themselves and bring in their village, and I know through this circle of influence, we really can make something great happen.