The impact kidney disease has on patients and our health care system cannot be understated. To put it in perspective, there are more than 37 million people in the United States with kidney disease. This is roughly equivalent to the entire population of California. Even worse, more people will die from kidney disease this year than breast or prostate cancer. Given the staggering number of people chronic kidney disease (CKD) and end stage renal disease (ESRD) affects, it is imperative we continue to modernize and update federal policies to ensure those with kidney disease are able to access the care they need and enjoy the best quality of life possible.
Those living with kidney disease face challenges on many different fronts. Whether it is accessing a donor kidney for transplant, choosing between home or in-clinic dialysis while juggling a job or family responsibilities, or accessing Medicare coverage for treatment, the constellation of challenges for this population adds an additional layer of stress to an already challenging chronic condition. And the gravity of the situation extends even further as this disease disproportionately impacts communities of color and patients with ESRD are often poorer and sicker than other Medicare beneficiaries. The pandemic of the past two years has also exposed the vulnerabilities of CKD patients to COVID-19. Because of their compromised immune systems, they are more likely to be hospitalized and die from the virus.
Our job as advocates for kidney disease patients is as important as the population it affects. For Kidney Care Partners (KCP), complex issues like these are what motivates us to initiate positive changes for these vulnerable patients. We must continue to help patients access evolving therapies and treatments — including vaccinations — that will protect their health during this pandemic and beyond. It’s also important that, when appropriate, individuals with kidney disease have the choice and full access to critical and innovative treatments in the home setting, when possible, to best manage their disease condition.
One of the biggest hurdles to improving kidney care has arguably the most basic solution: too many Americans don’t even realize they suffer from kidney disease until it’s too late. And once diagnosed, far too many barriers stand in the way of receiving easily accessible care. KCP urges legislators to allow Medicare coverage for kidney care screening during annual wellness visits and to increase access to a Medicare Kidney Disease Education benefit, both of which will help more Americans understand their risk and improve their chances of identifying CKD early.
But early diagnosis is only a start. We must bolster the kidney care workforce so that those needing routine kidney care as well as those who are waiting for a transplant are able to receive needed care without impediment. Our nation is in desperate need of more nephrologists and other trained health professionals to care for kidney patients, which is why KCP supports legislation that provides early exposure to the field of nephrology for medical students. We also need better telehealth options for kidney patients, greater opportunities for home dialysis care, and enhanced care coordination between patients’ provider teams and facilities.
Furthermore, many barriers standing in the way of next-generation care must be removed if we are to ever get ahead of the kidney disease epidemic. Part of the battle that we cannot ignore is ensuring coverage and payment models are fair. For patients, this means ensuring that individuals with kidney disease have the same insurance options as other Americans and can receive charitable premium assistance when needed — and that insurers are prohibited from discriminating against patients with kidney disease or kidney failure. For providers, progress will mean reforming the ESRD benefit in a way that prioritizes quality and provides for a payment that rewards it.
There is no cure for kidney failure, so access to transplants must remain a key focus. It is crucial that the kidney care community — together with legislators — support policies promoting transplantation, including accessing pre-emptive transplants, expanding access to waitlists, and supporting efforts to increase the supply of organs. Americans who need an organ transplant deserve an easier time obtaining one — and living donors shouldn’t fear being excluded from insurance coverage because they want to give the gift of life.
The bipartisan Chronic Kidney Disease Improvement in Research and Treatment Act (H.R.4065/S.1971) can help to reach many of these goals. Introduced in both the U.S. House and Senate, it’s legislation that will help expand access to quality kidney care and transplantation, allow for more choice in how and where Americans receive care, and ensure payment and coverage is comprehensive and fair for those needing care as well as for those providing it.
If current trends hold true, 12 people will die every day while waiting for a kidney transplant that never comes. Unfortunately, we can’t prevent all deaths, but we can commit to working with Congress and the administration to make any and all necessary investments towards innovative solutions, equitable access, and enhanced quality. We must work at this as if lives depend on it — because they do. We at KCP urge legislators to take immediate action to address these challenges and, in so doing, mark a turning point to improve the lives of those living with kidney disease in the United States.
John Butler is chair of Kidney Care Partners and CEO of Akebia Therapeutics and Michele Kimball is executive director of KCP.