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The Coronavirus – 2019 (COVID-19) pandemic is unmasking the shortcomings of in-center hemodialysis for people with kidney failure. Individuals with kidney failure who rely on in-center dialysis do not have the luxury of social distancing during a pandemic. In-center dialysis exposes people with kidney failure and healthcare workers to potential infection. Additionally, in-center hemodialysis patients are exposed to other discomforts and inconveniences associated with strict infection control and isolation policies necessitated by emergencies like pandemics.
While there are many incentives to invest in rare diseases, well designed clinical trials are critical to getting the new therapies conceived by pharmaceutical companies to the people who need them.
Primary hyperoxaluria (PH) is a rare genetic kidney disease impacting fewer than 1000 people in the US. While many people with kidney disease are asymptomatic until they progress to kidney failure and can rely on dialysis or a transplant to replace their kidney function, the unique characteristics of PH cause severe symptoms early in life and make common kidney replacement therapies ineffective.
Rare Disease Day on Saturday, February 29, is intended to raise awareness of the thousands of rare diseases and the millions of people who live with them around the world. There are more than 100 rare kidney diseases, most of them without US Food and Drug Administration (FDA) approved therapies. Because of the lack of innovation in novel therapies to treat rare kidney diseases, many people who live with them face the prospect of progressing to kidney failure and enduring dialysis or waiting for a kidney transplant.
The
Advancing American Kidney Health
initiative made developing an artificial kidney a national priority. The increased interest, investment, and innovation brought about by this policy highlight the need for new and improved infrastructure to facilitate innovation.
The Kidney Health Initiative (KHI) hosted a stimulating session entitled, “The Time Is Now: Using Partnerships to Spur Innovation” which described some lessons on bringing communities from the perspective of the US Food and Drug Administration and KHI.
With the aid of patients, care partners, and multiple academic, private, and public communities, the Kidney Health Initiative’s newly developed technology roadmap is catalyzing innovative approaches to kidney replacement therapy (KRT). The roadmap provides guidance for innovators and entrepreneurs who are working to redesign dialysis and provide better care for those with kidney disease.
The Kidney Health Initiative (KHI) hosted its Seventh Annual Stakeholders Meeting May 29-30, in Washington DC. The annual meeting revolved around the theme of “Collaborating for Innovation to Improve Patient Care and Outcomes”. Planning Committee Co-Chairs Paul T. Conway and Mahesh Krishnan, MD, FASN, developed a program that attracted nearly 200 registrants. The “think-tank” style meeting included onstage Q&A with government representatives, presentations from leaders in the kidney community, and member showcases highlighting innovations around the KHI membership.
The Kidney Health Initiative (KHI) recently released a new website to inform the community about its mission, objectives, and membership. The new site also showcases the publications from completed projects since the formation of KHI in 2012.
For the first time, KHI’s research and recommendations are centralized and accessible to kidney health professionals, researchers, patients, and innovators. The redesigned website highlights:
In early December 2018, Prabir Roy-Chaudhury, MD, PhD, FASN, the outgoing American Society of Nephrology Co-Chair for KHI, and Raymond C. Harris, MD, FASN, who began his term as Co-Chair for KHI in 2019, recorded a discussion with ASN Executive Vice-President Tod Ibrahim. This wide-ranging Kidney News podcast included Dr. Roy-Chaudhury’s evaluation of his six-year tenure and an outline of Dr. Harris’ vision for the future.
“What I have learned more than anything else, is that if you get talented and committed people from different backgrounds together, then wonderful and impactful things just seem to happen.” Prabir Roy-Chaudhury, MD, PhD, FASN, ASN Co-Chair for the Kidney Health Initiative
KHI is a public private partnership with the US Food and Drug Administration whose mission is to foster the development of new therapies to improve the lives of people living with kidney diseases. KHI has completed several projects this year, selected a new American Society of Nephrology (ASN) Co-Chair, and released a technology roadmap to outline opportunities for innovative alternatives to renal replacement therapy (RRT). Below are six highlights from the past year.
