The July launch of the “Advancing American Kidney Health” initiative (AAKH) was a watershed moment when the Federal government decided to shake up the treatment landscape to move from treating kidney disease to one that advances kidney health. The signing of the Executive Order was an event in and of itself, casting a national spotlight on kidney disease, but also one that will lead to years of downstream regulatory activity. Most of the provisions in the initiative direct the Department of Health and Human Services (HHS) to take steps to change or create new regulations to transform healthcare for kidney patients. Much of this regulatory activity is the direct result of NKF’s advocacy! We built the momentum for important kidney policy proposals and saw our work become part of the “Advancing American Kidney Health” initiative. Now it’s time to make sure that these policies move forward with the voice of the patient at their center!
What is NKF Up To?
On November 4, 2019, NKF and the American Society of Nephrology (ASN) announced a new partnership with the U.S. Department of Health and Human Services (HHS) to collaborate on the Public Awareness Initiative outlined in the Executive Order on Advancing American Kidney Health, an historic action initiative to transform kidney health. This collaborative partnership will provide education about the risks of kidney disease and promote the early detection, treatment and management of kidney disease to improve patient outcomes. This initiative will also share information to enhance awareness of the causes and consequences of kidney disease.
One of the highest profile regulatory policies from the kidney health initiative is the ESRD Treatment Choices (ETC) payment model. A payment model is a way of paying healthcare providers to do something different than they are currently doing. Unfortunately, we know that right now our healthcare system rewards getting patients on in-center dialysis and keeping them there, rather than encouraging transplants and home dialysis. The ETC model would test whether paying providers who treat Medicare patients differently can encourage them to offer patients a wider range of treatment options for kidney failure so that, within just a few years, most new patients with kidney failure are either transplanted or dialyzing at home. NKF worked with our committee of policy experts to share patient perspectives on the payment model and ensure that patients’ choice of treatment is also protected. Check out NKF’s comments to HHS here.
Another important element of the initiative is reforming how Organ Procurement Organizations (OPOs) operate. OPOs are the organizations responsible for identifying and procuring organs from deceased donors. We want to make sure that OPOs identify every possible donor and transplant every organ possible – which can mean the difference between a wait-listed patient receiving a transplant or not! NKF wrote to HHS expressing patients’ support for reforms that would ensure OPOs are maximizing their chances of receiving a transplant.
There hasn’t been a dull moment since the “Advancing American Kidney Health” initiative was announced in July and we don’t want the initiative’s activities to slow down any time soon! In the next few months, we’ll be prepared for more new policies including a proposal to expand out of pocket expenses that can reimbursed by the National Living Donor Assistance Center (NLDAC) to assist living organ donors, more reforms to OPOs, and policies that encourage the development of a wearable or implantable artificial kidney. As we hear what’s new, we want to hear from the kidney community! Follow the @NKF_Advocacy twitter account to learn about what’s being announced and to share your thoughts on how these policies can be more patient centric.
Recent Regulatory Wins
The Advancing American Kidney Health initiative is not the only thing keeping us busy! We’re successfully pushing back on regulations that would make it more complicated for potential willing donors to engage with transplant centers, advocating for improvements to the Quality Incentive Program for dialysis facilities, and helping HHS implement NKF’s recommendations to reduce the number of kidneys that are discarded by transplant programs. In fact, very recently the Centers for Medicare and Medicaid Services (CMS) finalized one of our recommendations, a change to regulations that cause transplant centers to be overly conservative when considering accepting kidneys that might be less than perfect. Another great victory for NKF’s advocacy efforts for kidney patients!
You can keep up with what’s happening by following us on Twitter, where we share our take on what’s new in policy. We post our letters on NKF’s Policy & Legislation site here and have a dedicated page for the “Advancing American Kidney Health” initiative where we share how we’re bringing the patient’s voice to the Administration’s efforts.