Bill Improves Research, Patient Choice, Care Coordination for Americans with Kidney Failure

WASHINGTON, DC – Co-Chair of the Congressional Kidney Caucus Rep. Tom Marino (R-PA) was joined by representatives of Kidney Care Partners (KCP) to spotlight the importance of The Chronic Kidney Disease Improvement in Research and Treatment Act (H.R. 4814), bi-partisan legislation that will set the stage for the future of Medicare’s End Stage Renal Disease (ESRD) program. The bill, introduced in June by Rep. Marino and Rep. John Lewis (D-GA), addresses issues related to research, choice, and access to new models of coordinated care for individuals with kidney disease.

“Today more than one in ten Americans suffer from a form of kidney disease, and it is the 9th leading cause of death in the United States. As a three-time kidney cancer survivor, no one understands the devastation these health conditions can have on a patient and his or her family better than I do,” said Representative Marino. “I urge my colleagues to join me in the fight to increase kidney care awareness and encourage greater research into kidney care treatment.”

KCP is a broad-based coalition of patient advocates, clinicians, care professionals, dialysis providers, researchers and manufacturers working together to improve quality of care for individuals with chronic kidney disease (CKD) and ESRD. KCP Chairman Dr. Edward Jones, joined by fellow KCP members LaVarne Burton, President and CEO of the American Kidney Fund (AKF), and Dr. Sharon Moe, President of the American Society of Nephrology (ASN), underscored the importance of the legislation at today’s briefing.

“Federal policies related to quality and Medicare coverage have a critical effect on kidney disease patients’ care, and we thank Representative Marino for sponsoring The Chronic Kidney Disease Improvement in Research and Treatment Act,” said Dr. Jones. “The kidney community applauds Representatives Marino and Lewis for their long-time leadership and ongoing efforts to protect our nation’s most vulnerable patient population, and we look forward to working with Congress to advance this important legislation.”

Currently, more than 26 million Americans have some form of kidney disease and are at risk of developing kidney failure absent some form of disease management education or preventive care. Each year, more than 100,000 Americans are diagnosed with ESRD and require a kidney transplant or dialysis – usually three times a week for several hours per treatment – in order to survive. A kidney transplant and renal dialysis are the only treatment options.
Due to the limited number of kidneys available for transplantation, most individuals with ESRD receive dialysis, which is covered by the Medicare program, regardless of the individual’s age. Eighty percent of dialysis patients rely on Medicare for their care.

“Speaking as a physician, I find the coordinated care provision to be one of the most exciting parts of the bill,” added Dr. Jones. “Many individuals on dialysis have multiple health problems, which can result in complications and costly hospital admissions. H.R. 4814 opens the door to the future by establishing a voluntary coordinated care program.”

AKF’s LaVarne Burton stressed the importance of the patient education components of the bill and noted that AKF, along with patient groups Dialysis Patient Citizens, the National Kidney Foundation and Renal Support Network – have provided a unified patient voice in this movement toward better-educated patients. Ms. Burton also highlighted the bill provisions providing for patient choice, underscoring the importance of choice in all of healthcare but especially when it comes to kidney failure: “H.R. 4814 expands patient choice by eliminating payment disincentives for physicians caring for home dialysis patients. The bill also reduces barriers in rural areas by leveraging telemedicine – and allowing dialysis facilities to be designated as telemedicine sites.”

Ms. Burton also noted that one important provision in the bill would go a long way toward expanding patient choice, and the issues related to insurance coverage. Burton explained that patients on dialysis are not allowed to keep their private health insurance.

“It’s difficult enough to deal with the health care challenges associated with kidney failure, but those challenges are compounded by the fact that individuals with kidney failure who are on dialysis lose their private health insurance after 30 months and must transition to Medicare. This is true even if the patient’s private coverage is more comprehensive than Medicare’s,” Ms. Burton said. “H.R. 4814 addresses this problem by allowing individuals with kidney failure who have private group health insurance to remain in their current plan for up to 42 months after receiving a diagnosis of kidney failure, creating incentives for insurers to keep enrollees healthy. It also helps ease a patient’s life transition as he or she navigates new and complex medical issues.”

According to Dr. Jones, the legislation also allows individuals with kidney failure access to Medicare Advantage plans. “This makes enormous sense for dialysis patients,” he said. “Low-income beneficiaries as well as minorities – both well represented in the dialysis patient population – rely heavily on Medicare Advantage plans for coverage. Not allowing our patients access to Medicare Advantage plans has no basis in policy or clinical care. This is an issue that can and should be taken up and resolved now. We applaud Reps. Marino and Lewis for identifying and recognizing this important opportunity.”

ASN’s Dr. Sharon Moe stressed that kidney disease remains a significant public health issue. She said, “The National Institutes of Health (NIH) research spending on ESRD and kidney disease equates to just $30 per patient compared to significantly more per patient of research funding for other disease groups. Clearly, kidney research is underfunded. But what is also clear is that investing in research can yield dividends in innovations that provide more options and more cost-effective care for kidney disease patients.”

“Many of Rep. Marino’s colleagues have joined him in support of this legislation, and I hope that all of his colleagues on both sides of the aisle will do the same,” added Dr. Jones. “The Chronic Kidney Disease Improvement in Research and Treatment Act lays important groundwork for smart investments in kidney research and ensures that individuals with kidney disease have the tools, resources, and care they need to live life to the fullest today and into the future.”

“This bill will provide immediate assistance to those living with this disease and also ensures the future of the care we are able to provide through investment in research and innovation,” concluded Rep. Marino. “It supports improvements in the research, treatment and care of chronic kidney disease and will benefit more than 615,800 Americans living with kidney failure or end-stage renal disease and the 430,000 of those who rely on life-sustaining dialysis care to survive.”