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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.
On Thursday, Feb. 6, a panel of leaders in the kidney innovation community highlighted accomplishments made by KidneyX at a congressional briefing in Washington, DC, and called on Congress to support KidneyX.
The briefing, titled KidneyX: Accelerating the Future of Kidney Care, featured a panel of speakers representing the Department of Health and Human Services, the KidneyX steering committee, venture capital, kidney patients, and KidneyX prize winners.
Announced late on Monday, December, 16,
KidneyX
received $5 million in the compromise government spending package proposed. The first-time funding for KidneyX for Fiscal Year 2020 is included in the Labor, Health and Human Services, Education, and Related Agencies (LHHS) bill.
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.
Today, the US Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN) launched the second phase of KidneyX: Redesign Dialysis, a prize competition that seeks to transform kidney care. Redesign Dialysis is part of a series of KidneyX prize competitions to catalyze the development of innovative solutions that can prevent, diagnose, and treat kidney diseases.
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.
The US Department of Health and Human Services (HHS) Office of the Chief Technology Officer and ASN announced a diverse group of experts for the new KidneyX Innovation Accelerator steering committee, which will play a critical role in recommending a five-year strategic plan for the initiative, as well as providing guidance for all KidneyX activities and outreach. This work includes recommendations for prioritizing the areas of greatest unmet scientific need and fundraising to support future KidneyX prize competitions.
Announced on October 7th, the Nobel Prize in Medicine was jointly awarded to a trio of scientists, William G. Kaelin Jr., Peter J. Ratcliffe, and Gregg L. Semenza, for their work on “how cells sense and adapt to oxygen availability,” The New York Times reports.
These “investigators uncovered detailed genetic responses to changing oxygen levels that allow cells in the bodies of humans and other animals sense and respond to fluctuations, increasing and decreasing how much oxygen they receive.”
The U.S. Department of Health and Human Services (HHS) has awarded a contract to a KidneyX award winner to provide hemodialysis systems in communities hit by natural disasters. The HHS Office of the Assistant Secretary for Preparedness and Response has stated it will be prepared to use the systems by the end of this year. The contract was awarded on October 3, 2019, to Outset Medical, one of the winners of the KidneyX Redesign Dialysis Competition .
