Contact: Denise Eilers, President Home Dialyzors United
Home Dialyzors United Attends Meeting with Secretary Azar at HHS Headquarters.
Davenport, IA. Home Dialyzors United (HDU) On May 16, 2018 HDU Board President Denise Eilers and member Nichole Jefferson were invited as part of the Kidney Health Initiative’s Patient and Family Partnership Council, to attend a meeting at HHS headquarters in Washington, D.C. to discuss the proposed public private partnership, KidneyX.
The current state of innovation for treatment of kidney disease is appallingly outdated. Some 30 million Americans suffer from kidney disease, yet the solutions are nearly identical to what they were more than fifty years ago. People with chronic kidney disease deserve better from our healthcare system.
That is why the Department of Health and Human Services and the American Society of Nephrology partnered to create the Kidney Innovation Accelerator (KidneyX, to rapidly increase the development of drugs, devices and digital health tools spanning prevention, diagnostics and treatment of kidney diseases. KidneyX will engage various stakeholders, including nephrologists, physicians, and entrepreneurs. However, there is one stakeholder whose voice will always come first: the patient.
HDU was honored to be included in the KHI meeting, along with ten other patients suffering from chronic kidney disease and/or their care partners, to meet with HHS officials to tell their stories. Secretary Azar, along with staff from the FDA, CMS and NIH listened to learn how KidneyX can best support patients.
HHS chose to share the experience of Nichole Jefferson, an HDU Board Member, KHI PFPC Member, and AAKP Ambassador, who explained her journey with kidney disease:
“As a kidney transplant recipient, I am enthusiastic about Kidney X because it can save others from going through the turmoil I experienced. My kidney disease journey began in October 2003 with a visit to the emergency room. After hours of testing, I was presented with the shocking diagnosis of end-stage renal disease.
“During the emergency room visit I learned I would have to start dialysis immediately. I was somewhat familiar with dialysis because of an uncle who had experienced kidney failure in the early 1980’s. I was under the impression that in the 20-plus years that my uncle had experienced dialysis, things had changed, and it wouldn’t be as difficult as it was for him. Imagine my surprise when I realized there hadn’t been much change in the treatments and I would essentially have the same options and suffer the same horrible side effects of dialysis.
“Everyone was ‘sentenced’ to four hours of treatment, three days a week, on the same day at the same time, week after week after week. When evaluating this tight regimen along with my work schedule and LIFE, I chose peritoneal dialysis. Although I was able to be treated while I slept, it was not without complications. There were several bouts of peritonitis, some of which required extensive hospital stays.
“On June 12, 2008, I received the gift of life–a kidney transplant. The transplant allowed me to watch my daughter grow into a lovely young woman. While watching her grow, I wondered if she, too, would have this disease. Kidney X gives me hope that my daughter, along with future generations, will be able to avoid the agony I experienced with kidney disease. It is my aspiration that Kidney X brings alternatives and ultimately a cure for chronic kidney disease.”
Patients like Nichole work tirelessly as advocates to promote a better life for all kidney patients, and believe that kidney disease deserves the same level of innovation that we’ve seen in treating heart disease and cancer. HDU believes it is time to move past the status quo and that KidneyX is one of the solutions.
To learn more about how KidneyX will support patients, and how patients will support KidneyX, visit http://www.kidneyx.org/