Take Action Chronic Kidney Disease Improvement in Research and Treatment Act of 2023 and 2024 (H.R. 5027/S. 4469).

This bipartisan bill can save lives and improve quality of life for millions.

The Renal Support Network (RSN) extends its appreciation to Representatives Carol Miller (R-WV) and Terri Sewell (D-AL) for re-introducing The Chronic Kidney Disease Improvement in Research and Treatment Act of 2023, H.R. 5027.

On June 5, 2024, Senators Ben Cardin (D-MD) and Marsha Blackburn (R-TN) introduced S. 4469, the Chronic Kidney Disease Improvement in Research and Treatment Act of 2024.

This important legislation includes several provisions designed to improve the understanding of, and promote access to treatment for, chronic kidney disease.

Passing this Act would be a significant step toward improving care for people who have kidney disease. Here are the major points that RSN believes will help the kidney community and why they will lead to optimal outcomes.

  1. Expand patient choice and coverage by guaranteeing access to Medigap policies for Medicare beneficiaries with kidney failure.

Current federal law does not establish an “all-inclusive” provision for access to Medigap or supplemental insurance to encompass items and services not fully covered by Medicare for end-stage renal disease (ESRD) patients under the age of 65.  Medigap coverage requirements vary across states. 16 states and the District of Columbia, Medigap coverage is not available, and 3 states exclude people who have ESRD.  Some plans may be available but are not affordable. Only 15 states provide premium protections to patients. Because the ESRD program provides Medicare to people affected by and receiving treatment for renal failure, this leaves people under the age of 65 choosing either to pay potentially huge out-of-pocket costs or to compromise their treatment by picking and choosing what they can afford. This obstacle can often financially cripple people living with kidney disease. A federal requirement that all Medicare recipients have access to Medigap coverage in every state, would guarantee that the full range of services required to maintain their health is available to them.

  1. Incentivize innovation by requiring the Centers for Medicare and Medicaid Services (CMS) to provide a long-term payment pathway for new drugs, biologics, devices, or other technologies.

Innovation and technology drive hope for people who have a serious illness and have proven to increase longevity and wellness outcomes. The ESRD Prospective Payment System (PPS) is a reimbursement system based on a “bundled”, which is a fixed amount per treatment that Medicare pays to dialysis centers.  The current ESRD bundled payment system has no sustainable means to incentivize the development of new drugs or technologies to improve care for patients with ESRD or support providers to incorporate them into their clinical practice. Payment drives practice. Although current policies provide for short-term, limited reimbursement, there is no mechanism to provide adequate and sustained resources to providers.  So, there is no incentive for pharmaceutical and technology innovators to develop new products or treatments without a clear path for their efforts to have a chance in the marketplace and to improve patient care.

Under current regulations, Medicare provides an additional payment for new drugs that last two. CMS will not provide any additional sustained funding for most new drugs after two years. For others, though, CMS analyzes data collected during that  three-year period to determine how much it will add to the ESRD PPS for the new drug. This means that pharmaceutical company must fully get their innovative product to market because future payments will be based on utilization within those three years, and it takes a lot of moving parts to make this happen. To force innovation to be reliant on this window is unrealistic and a monumental hindrance to increasing the availability of new innovative therapies and technology to improve care. This Act would require that the Secretary of HHS adjust the ESRD PPS bundled rate so it will cover the cost of adding a new drug, biologic, device, or other technology into the bundle after the transitional payment period ends. Innovation and technology drive hope for people who have a serious illness and have proven to increase longevity and wellness outcomes.

  1. Develop a sustainable dialysis infrastructure and address the workforce crisis by ensuring that kidney care providers receive accurate annual payment updates and fostering the nephrology pipeline by including nephrologists and non-physician practitioners in the National Health Service Corp loan forgiveness program.

End Stage Renal Disease is the only chronic illness that has access to Medicare (regardless of age) based on organ failure. RSN is grateful that Congress made this decision back in the early 70s at a time when patients were struggling to afford life-sustaining care. The ESRD Prospective Payment System (PPS) is a reimbursement system based on a “bundled” and fixed amount per treatment that Medicare pays to dialysis centers.  The nursing shortage in dialysis is causing harm to people who need dialysis.  Over 40 facilities have closed due to be able to compete in the marketplace with nurses being so scarce.

Also, some patients have comorbidities that raise costs, and it is important that facilities have the additional resources they need to care for them. Because payment drives practice, we don’t want to foster ‘cherry picking’. This Act would refine the ESRD payment adjusters to improve the accuracy of facility payments and would require the Secretary of HHS to adjust the ESRD bundled rate to ensure people who require lifesaving dialysis have access to care, and have the nurses in place to care for them.

  1. Boost kidney disease prevention efforts by adding CKD screening to the annual wellness benefit to allow Medicare beneficiaries at risk for kidney disease or kidney failure to screen for the disease and seek treatment to slow the progression if diagnosed.

Kidney disease is a silent illness. The two main causes of kidney failure are diabetes and high blood pressure. Often people don’t realize they have kidney disease until they reach ESRD and the kidneys fail. Adding a chronic kidney disease (CKD) screening to the annual wellness benefit will allow Medicare beneficiaries at-risk for kidney disease and kidney failure, to find out if they have the disease, help determine what stage they’re in, and allow them to seek treatment to slow the progression of the disease or even prevent it.  People can be better equipped for what’s ahead and know what options they have to care for themselves with preparation, education and access to proper medical information and specialists.

  1. Expand access to education resources by expanding the Medicare Kidney Disease Education benefit to allow dialysis facilities to provide kidney disease education services and offer services to Medicare beneficiaries with Stage 5 CKD who are not yet on dialysis.

The ESRD Kidney Disease Education (KDE) benefit is a vehicle to access critical knowledge about navigating kidney disease, including learning about steps they can take to slow its progression and understanding all their treatment options – transplantation, home dialysis, and in-center care – if their kidneys fail. Unfortunately, multiple barriers prevent beneficiaries from accessing it. .  Allowing dialysis facilities to provide kidney disease education services would be valuable for patients. . Also, due to the shortage of nephrologists, it would be advantageous to allow physician assistants, nurse practitioners, and clinical nurse specialists to serve as referral sources for the benefit. Education is particularly vital when you are in the last stage of kidney failure. Allowing Medicare beneficiaries with Stage 5 CKD who are not yet on dialysis to have access to the benefit would be extremely helpful to them, as well as to the Medicare program, because it will help patients make the best choices for care.

RSN will continue to give you the pros and cons of legislation relevant to the kidney community and our Advocacy offers direction on how to contact your representatives and have a voice in legislation that directly affects your life.

Track the progress of H.R. 5027
Track the progress of S. 4469

Web ID: H.R. 5027