The KidneyX Summit kicked off on April 29, 2019, with opening remarks by ASN President Mark Rosenberg, MD, FASN, who outlined how KidneyX is filling a much-needed gap in kidney care and will act as a catalyst to spur innovation in the space. Held at the United States Institute of Peace in Washington, DC, the summit will continue on April 30 with congressional perspectives; the role of NIH, FDA, and payors; and the nephrology investment landscape.
Following are remarks by the first day’s speakers.
Ed Simcox, JD, Chief Technology Officer at HHS
“When we launched KidneyX with ASN, we realized few were trying to reimagine how we can use technology to change the conversation about kidney care altogether,” said Ed Simcox. $113 billion is spent annually on dialysis and ESRD care – which is 3% of the entire federal budget – yet few are aware of the burden and cost. “I hope one day soon we’ll all look back at this gathering and say that it is a tipping point, where we decided as a community to go against the status-quo and be innovative.”
Senator Todd Young (R-IN) promises a continued pursuit
Senator Todd Young (R-IN) gave the US Senate perspective and committed to continuing pressuring his colleagues to fund KidneyX. He commented on a letter he sent to the Senate appropriations committee to fund KidneyX for $25 million in the 2020 fiscal year in order to catalyze private sector funding. He championed prize competitions as a useful way to foster innovation in order to address the lack of innovation in prevention, diagnosis, and treatment of kidney disease, especially given the high cost of current activities – 23% of all Medicare spending went to kidney disease in 2016.
Eric Hargan, JD, Deputy Secretary of HHS
Mr. Hargan outlined that kidney care has lagged behind other health care developments and has a lot of room to improve. He continued by referencing HHS Secretary Alex Azar’s plan released earlier this year to do so, which includes these elements: the need for more efforts to prevent, detect, and slow the progression of kidney disease, new technologies to allow more treatment options for patients with kidney failure, and better delivery of more organs for transplant and development of wearable kidneys.
“We’ve waited long enough for better solutions and treatments in the realm of kidney care… and I look forward to seeing the collaborative ideas, projects, outcomes, and results of this summit and the work that you all are doing”, concluded Mr. Hagan.
“There’s urgency that we’ve neglected for a long time in the area of kidney diseases,” Dr. Sedor said.
“The cost of kidney care is not sustainable, it continues to go up every year” and it is time to “start expanding funding sources and attracting capital that hasn’t been there before that will support the innovation we see in this first round of prizes.”
Dr. Sedor outlined the guiding principles of KidneyX:
The need to keep the sense of urgency to get things done quickly as patients are waiting
A focus on achievable goals
Collaborative to keep this at the forefront of policymakers and public
Sustainable to keep this accelerator successful and moving the ball forward
Dr. Sedor plans to do the following first steps in order to move KidneyX forward toward a prize portfolio that results in transformational changes for kidney patients’ lives:
Establish a governmental structure/committee with broad representation that welcomes constant input and criticism
Develop more partnerships for interdisciplinary solutions to remove barriers to innovation
Secure the investment needed both publicly and through private venture capital
Redesign Dialysis Phase 1 prize competition winners announced
ASN President Mark Rosenberg and HHS CTO Ed Simcox announced the 15 winners of the Redesign Dialysis Phase 1 prize competition. All winners can be seen here. Separated into three groups (Diagnostics, Improving Dialysis, Engineering) of five winners, each winner presented their project to the Summit and answered questions from the audience. The question and answer sessions sparked lively discussions among attendees and led to important exchanges among clinicians, business leaders, and patients alike.
Patient Experience panel
Paul Conway, Chair of Policy and Global Affairs and Immediate Past President of the American Association of Kidney Patients (AAKP), moderated a panel of two patients who briefly told their stories of kidney care. Kevin Longino is CEO of The National Kidney Foundation (NKF)and Daronta Briggs is the founder/CEO of Veterans Transplantation Association. Each included a call to those attending the Summit to continue in their work and strive toward dialysis and kidney care innovations so that others won’t have to endure the same tribulations they and their families had to go through. They mentioned that patients should be consulted by those developing new therapies to better refine the products and ensure that when they get to market they will be well received by consumers and result in many early adopters of the new technologies.
Stay tuned to Kidney News Online for a recap of day two of the inaugural KidneyX Summit.