Participants from Congress, HHS, NIH and the Kidney Community Discuss Private-Public Partnership to Advance Care, Research & Innovation for Individuals with Kidney Diseases, Kidney Failure, and Kidney Transplants
The briefing featured speakers representing the Congressional Kidney Caucus, the Department of Health & Human Services (HHS), the National Institutes of Health (NIH), and leadership from the kidney physician, patient and broader community. In a timely and detailed discussion, the panelists tied together the public and private initiatives, incentives and investments, both underway and still needed, that will pave the way forward for the most effective and efficient treatments and innovations.
“This is the kidney community’s 'moon shot'. Our community and the 40 million Americans who are living with kidney disease are long overdue for new ways to tackle this disease, and we are pleased with the momentum we’re seeing on several important fronts, including the exciting progress with KidneyX at HHS,” said Dr. Allen Nissenson, chair of Kidney Care Partners (KCP), who served as emcee of the event. “The fact of the matter is we need better treatment options, new therapies, improved technologies and greater availability of donor organs for those seeking transplants. Further, we need better guidelines for managing disease conditions to ensure kidney disease patients are getting the best available care.”
Dr. Mark Okusa, President of the American Society of Nephrology (ASN) added, “Today, we celebrate two promising vehicles aimed at spurring new developments in the care for people with kidney diseases. As a public-private partnership between the American Society of Nephrology and U.S. Department of Health & Human Services, KidneyX will foster multidisciplinary collaboration to accelerate innovation in the prevention, diagnosis, and treatment of kidney diseases. We are also enthusiastic about the Kidney Precision Medicine Project, launched by the National Institute of Diabetes and Digestive and Kidney Diseases, which will enable precision medicine to find specific drug targets and enable highly individualized kidney care.”
Further, with over 40 million Americans suffering from kidney disease, costing Medicare nearly $100 billion each year, the country stands at a crossroads. Though kidney care is improving—especially among the most vulnerable individuals with kidney failure—15 million Americans (almost half of those afflicted with chronic kidney disease) are completely unaware of their condition. As a result, many people are not receiving the timely and effective treatments they need to live longer, fuller lives.
“As a physician and an advocate devoted to improving the care of patients with kidney diseases and related disorders, I recognize that the United States still has a long way to go towards ending the kidney disease epidemic,” said Dr. Michael Shapiro, President of the Renal Physicians Association (RPA). “Therefore, it is essential for Congress to continue giving this issue the attention it deserves by devoting sufficient resources to mitigate barriers to kidney disease care and replacing antiquated care models with innovative alternatives for kidney care that focus on both the individual patient and the sub-population of Medicare beneficiaries with kidney disease.”
To help further improve care for those with kidney disease, Kidney Care Partners has worked in collaboration with lawmakers to introduce the bipartisan Chronic Kidney Disease Improvement in Research & Treatment Act (H.R. 2644 and S. 1890), which would, among other things, increase access to the Medicare Kidney Disease Education Benefit by increasing the number of healthcare professionals qualified to provide kidney disease education services.
“Kidney patients are intelligent consumers of health care, are fully capable of making their own independent treatment choices and refuse to settle for the present status quo and lack of options in kidney care. Our sense of urgency and our combined voices are the disproportionate force behind innovation and we are highly optimistic that a substantive change in care options and delivery is underway,” said Paul Conway, President of the American Association of Kidney Patients (AAKP) and Chair of the FDA Patient Engagement Advisory Committee.
“I remain excited about the promise of the bipartisan Chronic Kidney Disease Improvement in Research & Treatment Act in the House and Senate that contains key innovation and research provisions that will complement the many efforts discussed in the briefing today – in a way that can make a true and lasting difference for people with kidney disease in this country,” concluded Dr. Nissenson.
Kidney Care Partners (KCP) was founded in May of 2003, as a coalition of patient advocates, dialysis professionals, care providers and manufacturers dedicated to working together to improve quality of care for individuals with Chronic Kidney Disease (CKD). To learn more visit kidneycarepartners.org.
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