Request fulfilled: AKF responds to request for information from CMS

The American Kidney Fund (AKF) recently responded to a Request for Information (RFI) from the Centers for Medicare & Medicaid Services (CMS) regarding how CMS can improve the organ donation and transplantation processes, as well as the quality of care of dialysis services. CMS also asked for suggestions on how to address health equity issues within the kidney community.

RFIs are a great opportunity for individuals and organizations to share important, relevant information to help CMS develop its policies and best serve people with Medicare or Medicaid insurance coverage.

AKF offered suggestions for improving kidney disease prevention, dialysis and transplantation. In our comments, we highlighted ways to address health equity issues in kidney disease and shared resources that CMS could use to inform their decisions and help improve the lives of those living with kidney disease.

Here are some key takeaways from our full comments:

Prevention: Access to affordable insurance

The lack of access to high-quality, affordable health insurance often is a major barrier for people in seeking preventive care.

Without affordable health insurance – or any health insurance at all – people often do not see their health care providers, who can help them with early interventions for kidney disease.

As we noted in our comments to CMS, data show that when at-risk populations have access to health insurance, their health improves. Seventy-five percent of new kidney failure cases are caused by diabetes and high blood pressure — underlying conditions that can be managed before they cause damage to the kidneys.

AKF recommended expanding Medicaid access. In states with expanded Medicaid access, blood pressure and glucose (diabetes) measurements have improved, with the greatest improvements for Black and Hispanic Americans. Compared to states that did not expand Medicaid, people living in states that expanded the program had lower mortality rates after going on dialysis, and more people with kidney failure were preemptively placed on the transplant list, meaning less or no time on dialysis prior to transplantation.

AKF also suggested that CMS partner with groups like AKF to provide kidney disease awareness and education through programs like Know Your Kidneys™,Kidney Kitchen™, Kidney Health Coach and our annual Kidney Action Week.

Dialysis: Inform and empower people with kidney failure

Increasing access to educational resources around kidney disease is crucial to informing and empowering people with kidney failure to make the best choices about their care.

We suggested in our comments that CMS take advantage of programs and information created by patient advocacy groups like AKF, including our FIRST30 campaign. FIRST30 provides vital, easy-to-understand information for people newly diagnosed with kidney failure, their caregivers and the professionals involved in their treatments.

We also recommended that CMS expand the Medicare Kidney Disease Education (KDE) benefit, which covers up to six sessions of kidney disease education services for those starting dialysis treatments or receiving a kidney transplant. Expanding this benefit and increasing kidney disease education is an important step in increasing the rates of home dialysis and transplantation, especially in communities of color. Two policy changes that AKF suggested were expanding the KDE benefit and including kidney disease screening in the "Welcome to Medicare" preventive visit.

Transplantation: Making the transplant evaluation process easier to navigate and addressing disparities in organ transplantation

The transplant evaluation process should be easier for people on the waiting list to navigate.

People on the transplant waiting list commonly experience challenges in getting information to and from transplant coordinators, and many do not understand the various steps in the evaluation process. Transplant coordinators are vital to the process and are very helpful to patients, but the volume of inquiries transplant centers receive can make it difficult for coordinators to be responsive to questions. This is especially true at larger centers.

AKF recommended that CMS work with patient and provider groups to lay out communications expectations for people on the transplant waiting list, which would allow them to know where they are in the process. These communications could be in written, video and/or podcast formats, and should be easy to understand and be available in multiple languages.

AKF also provided ways to address health disparities in kidney transplants. We suggested that CMS facilitate the creation of outreach programs to people of color who are on dialysis. We also recommended that transplant programs reduce the amount of money that potential transplant candidates have in the bank as a requirement to be accepted onto the waiting list.

We are hopeful that CMS will use the information and suggestions provided by AKF to improve the lives of people living with kidney failure.