LaVarne Burton is the president and chief executive officer of the American Kidney Fund, a nonprofit organization providing comprehensive programs of kidney health awareness, education, and prevention. She recently took on another high-profile role, that of chair of Kidney Care Partners (KCP), a multi-stakeholder coalition of patient advocates, physician organizations, health professional groups, dialysis providers, researchers, and manufacturers. Nephrology Times asked Burton about her vision for KCP and the key challenges faced by patients, families, and healthcare professionals dealing with kidney-related diagnoses.
What is your vision for KCP’s role in shaping kidney policy in 2026, and how would achieving it translate into measurable changes in patient care?
First and foremost, I want to make sure that both the public and our nation’s policymakers recognize that one in seven Americans are living with kidney disease today. Unfortunately, this is a virtually silent disease, and most don’t even know they have it until it has progressed. We can do better. Education, prevention, and access to care are critical to improving quality of life and saving lives.
In my new role as Chair of KCP, I look forward to working closely with the coalition to strengthen patient education and choice, expand access to care and innovations, improve quality of care, and promote early detection for people impacted by kidney disease. Our central focus will be on advancing patient-centered reform for the kidney community at every stage of the kidney care continuum. That means:
Ensuring patients can access innovative, cutting-edge treatments and innovations
Empowering patients with the education and resources they need to make informed care decisions so that they know their options, including home dialysis and transplant
Supporting autonomy in health insurance plan selection for people with kidney failure (end-stage renal disease, or ESRD)
Improving Medicare Advantage network adequacy so patients with ESRD can reliably access the dialysis care they need
If we can take all these steps, it can be life-changing for people with kidney disease—earlier diagnoses, fewer insurance coverage disruptions, and increased access to innovative therapies that can improve their quality of life and overall health outcomes.
How does restoring patient choice in insurance coverage improve care and clinical outcomes for patients with ESRD?
It’s critical to ensure that individuals can choose the insurance plan that works best for them and their families. Congress recognized this in 1980 when it advanced the Medicare Secondary Payer Act (MSPA) to allow those with ESRD to keep their private insurance as their primary coverage before transitioning to Medicare.
Unfortunately, these protections were upended in the Supreme Court’s 2022 decision in Marietta v. DaVita. As a result, people living with ESRD can be targeted by group health plans and lose access to high-quality kidney care, including potentially lifesaving transplants and dependent coverage for their family members. They can also be exposed to unlimited out-of-pocket expenses for medical care, since Medicare does not cap these. Some patients may even be unable to get coverage for benefits like dental or vision coverage, which can worsen overall health outcomes.
To reinstate and protect patient choice, the Restore Protections for Dialysis Patients Act (S 1173/HR 2199)1,2 would amend the MSPA to prevent discrimination against individuals living with ESRD and safeguard their ability to maintain private health insurance coverage during their entire transition onto Medicare. We look forward to working alongside policymakers to advance this legislation so that those with kidney disease can access the best insurance plan for themselves and their loved ones.
Despite rapid therapeutic innovation in nephrology, access often lags. What is the single biggest barrier today, and how is KCP addressing it?
The single biggest barrier is the lack of long-term payment and market incentives for innovative technologies. Those with kidney disease have not experienced the same level of medical innovation that others living with conditions like cardiac disease, cancer, or Alzheimer’s have been able to access during the last 30 years. This begins with the fact that kidney disease research is inexcusably underfunded. In 2023, the NIH spent $2,745 per patient on HIV/AIDS-related research, $528 per patient on Alzheimer’s-related research, $423 per patient on cancer-related research, and only $19 per patient on kidney disease research.3
Moreover, even when ESRD-related treatments are developed, they are not getting to patients because Medicare only provides short-term funding for new drugs and devices. These overly restrictive and limited bundling policies—namely, the Transitional Drug Add-on Payment Adjustment and Transitional Add-on Payment Adjustment for New and Innovative Equipment and Supplies—stifle innovation in kidney care by providing temporary and inadequate reimbursement for products and therapies. As a result, providers are often hesitant to prescribe these innovative drugs, because they aren’t sure whether they’ll be reimbursed for providing them.
The Kidney Care Access Protection Act (KCAPA) (S 2730/HR 6214)4,5 would resolve this issue by establishing a long-term payment pathway for innovative drugs, treatments, and technologies. This would help ensure that people in the kidney community can access 21st-century care and would help encourage innovators to develop and manufacture products that can improve quality of life.
What is one change that would make the greatest difference to bolster patient education, and why?
Kidney disease is a silent, but devastating, epidemic. According to the CDC, more than one in seven American adults lives with kidney disease today, 90% of whom are unaware that they have it.6 Timely and accurate screening, diagnosis, and treatment are essential to slow or stop the progression of kidney disease.
The one change that would make the greatest difference to bolster patient education is to expand the use of routine chronic kidney disease screenings to make conversations about this disease standard practice and help ensure that diagnoses are made as early as possible. With this knowledge, individuals and their doctors can begin to manage their disease, slow its progression, and achieve better health outcomes.
In Medicare Advantage, how does inadequate network design most commonly affect dialysis access, and what is the best way to fix it?
The kidney care community is closely monitoring Medicare Advantage network adequacy issues that could pose significant access challenges for those with ESRD, including limited availability of in-network dialysis facilities and restricted access to innovative products.
We look forward to working alongside federal policymakers to create workable reforms that strengthen protections for all those living with kidney disease.
Which kidney policy issue should nephrologists watch most closely this year?
It’s hard to pick just one issue, but I do believe that we are approaching a concerning “tipping point” on ensuring both availability and access to new innovations in kidney care. I’m excited about the work of our community to ensure patients can access 21st-century care through the Kidney Care Access Protection Act. As mentioned, KCAPA is a solution that would provide predictable, long-term coverage for innovative drugs and devices and would help unlock investment, accelerate development, and—most importantly—ensure that breakthrough treatments actually reach those who need them most.
There’s a world of possibility that is currently untapped. Without reassurance of adequate long-term funding, innovators aren’t creating new products in the kidney disease care space at the same rate as they are for other chronic conditions.
The kidney care community looks forward to advancing reforms like the bipartisan Kidney Care Access Protection Act and the Restore Protections for Dialysis Patients Act to help modernize insurance coverage, Medicare policy, and the kidney care system as a whole, ensuring that we fulfill our promise to patients nationwide.