Update: Earlier this month, the Senate threw in the towel on health care reform after more Republican party defectors killed any chance of passing the Better Care Reconciliation Act, the Senate’s plan to replace the Affordable Care Act. Part of the loss in party support came from legislators who worried that planned Medicaid cuts would leave millions of U.S. citizens without insurance.

Treatment for end-stage renal disease is covered by Medicare regardless of age. But for individuals with early- to late-stages of chronic kidney disease, access to insurance can have an impact on how well they can control their decline of kidney function.

We asked the American Society of Nephrology President Eleanor D. Lederer, MD, who has voiced opposition to legislators about the Senate health care bill, to talk in more specific terms about how changes to Medicaid could hurt CKD patients.

NN&I: What do you see as the “big picture” in terms of cuts in Medicaid and the potential harm to individuals with chronic illnesses?

ASN President Eleanor D. Lederer, MD: Unquestionably, passing a bill that cuts hundreds of billions of dollars in Medicaid and adds 22 million more people to the ranks of the uninsured—as the Congressional Budget Office has estimated the Senate bill would do—will result in substantial consequences for individuals with chronic disease. Any time you delay or interrupt care for people with chronic illnesses, such as kidney diseases, you miss an opportunity to intervene favorably and increase the chance of a negative complication. The result is an increased burden of those illnesses on the individuals and on the costs to the health care system.

Since Medicaid expansion began under the Affordable Care Act, 32 states and the District of Columbia have taken the opportunity to add 11 million new people to the program. Today, nearly 50% of all Medicare fee-for-service beneficiaries with kidney failure are covered by Medicaid. In comparison, just 19% of the general Medicare fee-for-service population qualifies for the program, reflecting the socioeconomically disadvantaged status of many of the patients we nephrologists care for.

That is why I am concerned that if federal support for Medicaid is eroded in a transition to “block grants,” states will face difficulty making up the difference and the disastrous effect on access to care would likely fall disproportionally on this vulnerable kidney patient population.

NN&I: What do we know about the impact of delay in care for individuals with chronic kidney disease?

Lederer: As nephrologists, we already know that the longer care for chronic kidney disease is delayed, the more likely a patient is to progress more rapidly to late-stage CKD and possibly to complete kidney failure. Moreover, these patients present in kidney failure without an opportunity to consider a pre-emptive kidney transplant or to make plans for dialysis. They initiate dialysis using a temporary vascular access, leading to greater risk of infection, greater number of hospital days, and inferior survival. They are some of the most complex and costliest patients in the system.

Longer nephrology care before kidney failure is linked with better patient outcomes, including significantly lower mortality rates. Northwest Kidney Centers (NKC), in the Seattle area, recently shared some data supporting the idea that the Medicaid expansion has made a difference in accessing nephrology care early in the disease course.

Prior to expanded Medicaid, 21% of new NKC patients had never seen a kidney doctor before starting dialysis. But, by 2015, that number dropped to 14%. Nationally, that percentage has dropped from approximately 30% to less than 25%. These trends are improving lives and saving money.

ASN is concerned that potential reductions in patient access to Medicaid and other forms of affordable insurance would compromise just this kind of beneficial, even lifesaving, earlier access to care for people with kidney diseases.

These Americans would once again be relegated to delaying treatment and seeking health care services in high-cost settings, such as emergency departments, a pattern that can be life threatening for people with advanced kidney diseases or who have received a kidney transplant or donated a kidney as a living donor.

Furthermore, by providing Americans sustained access to care, we can work to slow the progression of kidney diseases and help patients stay healthier and work longer. The ability to work is often overlooked—a point recently highlighted in the joint American Association of Kidney Patients/Medical Education Institute’s Kidney Works report. Delaying care is bad for an individual’s health and often leads to individuals prematurely leaving the workforce and the ranks of taxpayers.

NN&I: You have expressed particular concern that individuals with preexisting conditions could find it hard to get affordable health coverage. Can you expand on this?

Lederer: As I said in our letter to Senate leadership, the Better Care Reconciliation Act appears to ensure that every American will be able to purchase insurance regardless of pre-existing conditions. However, because the bill also would allow states to waive the standards for essential health benefits, my colleagues and I are concerned that many insurers would be given loopholes through state waivers that would return us to the days of policies that cover too few services or that are prohibitively expensive.

There are so many potential pitfalls for kidney patients in this scenario. Kidney patients are among the estimated 52 million adults (27% of the adult population) who have pre-existing health conditions that would likely make them uninsurable if they applied for health coverage before the changes made by the Affordable Care Act. People with kidney diseases have a complex array of health care needs that using pre-existing conditions to deny or reduce coverage for them could be catastrophic. They need access to transplantation and the associated post transplantation care, i.e., medication to keep their donated kidney healthy.

If they have kidney failure, they require access to dialysis care. People with chronic kidney disease need access to care to prevent their condition from progressing. An early diagnosis of a genetic kidney disease that could save the person’s life through early diagnosis and treatment, could become the barrier to care instead. I would call on Congress to ensure that every American with kidney disease can both purchase affordable insurance and be confident that his or her insurance covers these vitally important services.

NN&I: Any thoughts on how we could bring about Medicaid reform but still protect those with chronic illness like CKD?

Lederer: ASN has developed a set of “Health Care Reform Guiding Principles,” which we have provided to Congressional leaders in the past and again referenced in our letter to Senators McConnell and Schumer regarding the Better Care Reconciliation Act. These principles are pretty simple.

  • access to affordable care for all Americans
  • access to care for individuals with pre-existing conditions
  • access to evidence-based screening, detection, and preventive care

Any proposed Medicaid reform needs to accomplish those goals in order to protect individuals with chronic illnesses like CKD.

The principles may be straightforward, but we are not so naïve as to think that the answers are simple. If they were, health care would have been solved decades ago. The bottom line is that if a proposal can’t achieve the goals outlined in these basic principles, then we all need to keep working at it. That’s why I believe the Better Care Reconciliation Act is not ready to become the law of the land.

Dr. Lederer is Professor of Medicine at the University of Louisville School of Medicine, Chief of the Division of Nephrology, Associate Director of the Nephrology Fellowship Training Program, Director of the Metabolic Stone Clinic, Associate Ombudsman for the medical school, and Associate Chief of Staff for Research and Development at the Robley Rex VA Medical Center.