Each year, the Centers for Medicare and Medicaid Services (CMS) publishes the end-stage renal disease (ESRD) regulation, known as the ESRD rule. One of CMS’ main job...
One of NKF’s most important goals is making sure that more people benefit from a kidney transplant. Our Chief Executive Officer, Kevin Longino, recently spoke to a committee at the National Academies of Science, Engineering and Medicine (NASEM) about just how NKF intends to do that.
A NASEM committee is currently working on recommendations to Congress on how to make our system of procuring and allocating donor organs fairer and more efficient. The committee asked Kevin, who is also a kidney recipient, to share NKF’s perspective on how to increase access to kidney transplantation and make the kidney transplant process work better for patients.
With 12 kidney patients dying on the waitlist every day while 9 kidneys are “discarded” every day, Kevin spoke about NKF’s work making sure that kidneys that are being thrown in the trash make it to patients who want them instead. Not everyone wants a less than perfect kidney, but some do – especially if it means getting off dialysis.
Right now, there is very little transparency in the transplant system. That means if a patient is waiting for a kidney, their transplant center might decide for them that a kidney isn’t of good enough quality to consider transplanting without even informing them. Kevin told the committee that patients want and deserve more transparency.
He also spoke about shared decision-making, where the transplant center talks to a patient about their life, goals, and preferences. That means checking in with a patient to see whether they want to wait for a perfect kidney or take one that might otherwise be discarded. We need more shared decision-making in transplant so patients can better understand their options, the pros and cons of each choice, and make the decision that’s right for them.
Finally, Kevin helped the committee understand what all can be done to support living donors, including reimbursing for expenses associated with living donation and passing the Living Donor Protection Act (join Voices for Kidney Health and help us pass these essential laws).
All in all, it was a great day for the patient voice! We will provide an update on the committee’s recommendations once they are published and then move forward with making these recommendations a reality so more people can get a kidney transplant.
This August NKF Voices for Kidney Health advocates from across the country are meeting with their federal representatives, sharing their stories and working to ensure ...