Why are there so many barriers to
diagnosing and treating kidney disease?

By Elise Wilfinger



Despite the growing number of diabetes – and corresponding – CKD cases, a multitude of medical and social barriers still exist to diagnosing and treating chronic kidney disease (CKD). We’re fortunate that Dr. Holly Kramer agreed to join us for a discussion to unearth some of the reasons why this is still the case and what specific change is needed.

By way of introduction, Dr. Kramer is a Professor of Public Health Sciences and Medicine in the Division of Nephrology and Hypertension at Loyola University Chicago. She is also the Associate Director of Research at the Hines Veterans Administration Medical Center and Founding Director of the Serwa Research Foundation on Aging.

Dr. Kramer is the immediate past president of the National Kidney Foundation, and she continues to serve on the NKF Scientific Advisory Board, as Vice Chair of the Kidney Disease Outcomes Quality Initiative, and is a member of the Board of Directors.

An internist, with a fellowship in Nephrology, Dr Kramer’s highly distinguished research career has focused on the relationship between chronic kidney disease and nutrition, as well as the impact of obesity on kidney health, genetic variants for kidney disease and connections to cardiovascular disease risk.

She has also authored or co-authored 127 research journal articles and 5 book chapters.

Dr. Kramer was awarded the Garabed Eknoyan Award, a prestigious National Kidney Foundation award for her considerable contributions in clinical research in the field of kidney disease and for her service to the NKF.

“Chronic Kidney Disease is still on the back burner.
It’s like 1972, as far as this disease is concerned.”

  • Dr. Kramer
  1. How do you compare chronic kidney disease with other “silent” diseases?

Chronic kidney disease (CKD) today is very similar to where we were with Hypertension in the early 1970s.

Starting in the early 1960s, we had the first clinical trials for blood pressure medications for people with hypertension. The two trials were conducted in VA medical centers. Interestingly, the Hines VA (where I serve) was one of the four sites. The trials demonstrated that lowering blood pressure reduced strokes and mortality. The evidence was so overwhelming that the trials were even stopped early.

Next on the agenda was to communicate the results to both clinicians and the public. The goal: to educate both parties that treatment of hypertension was important and would be very beneficial for a patient’s overall health. To build awareness and educate on the topic, the U.S. government spent upwards of $170 million (in 1970s dollars) in community-wide campaigns, which is a lot of money for a public health campaign.

Most patients with elevated blood pressure don’t have any signs or symptoms. Until, that is, they suddenly have a stroke or a massive heart attack. Most patients with kidney disease are also asymptomatic; they don’t know that they have it unless they are screened for it or end up in an emergency room very sick and told they need dialysis.

And where clinicians are both aware and comfortable treating diseases with symptoms, they are hesitant to give patients any medication when there are no obvious symptoms. They may be asking themselves, “Why should I treat patient X when he seems to be doing fine?” But CKD is a very serious disease on its own, and it’s a strong risk factor for cardiovascular events. It needs to be treated as soon as possible.

“We spend $80 billion/year on dialysis, but only $10 million on building awareness for CKD.
You do the math.”

  • Dr. Kramer
  1. We also spoke about the need for awareness and broad-scale education in 2021. Have there been any advances on this front?

Recently, Congress invested $10 million for the CDC’s Chronic Kidney Disease Surveillance System (note: documents the burden of CKD and its risk factors in the US population over time and monitors the progress of efforts to prevent, detect, and manage CKD.) That’s $10 million in 2022 compared to the $170 million in the 1970’s spent to build awareness and educate re: hypertension. Essentially, it’s a drop in the bucket.

There are 37 million people with CKD in the U.S. And we spend $80 billion/year for dialysis treatments. And we’re only investing $10 million for public awareness campaigns? You do the math.

We desperately need the private sector to step in: innovators, pharmaceutical companies, and others. The entire healthcare ecosystem must attack this epidemic head on.

  1. There are new, formalized guidelines and measures in place which recommend that patients (with type 2 diabetes) get tested for CKD. You would think that this would drive at least some of the change needed. Yes?

Yes, we have ADA (American Diabetes Association) and KDIGO (Kidney Disease Improving Global Outcomes) guidelines which, for the first time, link non-nephrology specialties (like primary care, endocrinology) with nephrology. This is one important step forward, as optimizing care for adult patients with type 2 diabetes now includes screening for CKD.

Another new ‘tool’ is the HEDIS quality measure which rewards clinicians for measuring UACR and eGFR annually in patients (18-85 years old) with type 1 and 2 diabetes.

Awareness, education, and quality measures will hopefully drive the change needed. We need all three.

Side bar: The Kidney Health Evaluation for Patients with Diabetes measure is now a part of the HEDIS portfolio of measures. It improves kidney disease testing in people with diabetes, a key risk factor for developing kidney disease. Clinical guidelines recommend people with diabetes should be routinely tested to detect kidney disease. While the tests associated with kidney disease detection and diagnosis are inexpensive and widely available for routine clinic visits, fewer than 50% of people with diabetes get both tests. This measure is a way to engage health plans, integrated health networks, and individual primary care practitioners to improve the diagnosis of kidney disease.”

“A normal life just wasn’t possible with their current health.”

  • Dr. Kramer
  1. In a March 2021 blog, published by the American Journal of Kidney Diseases, you wrote that “change in how one practices medicine is very difficult, but nonetheless it’s essential, especially as it relates to the diagnosis, treatment and prevention of kidney disease which has not kept pace with the change in care for other chronic diseases.” You added that the “lack of change has impeded the ability to address the strong racial and socioeconomic disparities in kidney health outcomes we continue to face in the US.” Can you elaborate on your POV?

Within my first 5 years as a nephrology attending at Loyola, I went into the dialysis unit and saw several Black women in their early 40s on dialysis. I was deeply affected by seeing these young women, with type 2 diabetes and morbid obesity, experience early dialysis. It just wasn’t right. Fact is, if these women had been screened at an earlier age, had been treated, dialysis could have been avoided.

I watched many of these patients suffer, spending most of their time in the hospital, experiencing multiple complications from the dialysis.

The women all wanted the same thing, a normal life. They wanted to marry, have children, and have productive jobs; none of these things were possible with their current health.

If any of these women suffered with a form of cancer, a selection of medications would have been available for treatment and follow-up nursing care would have been provided after each chemo session. They would have survived and maybe gone on to achieve their life goals.

Because it’s CKD, none of these things are consistently happening. It must change.

“Many CKD patients are only looked at for how close they may be to needing dialysis.
At that point, it’s much too late.”

  • Dr. Kramer
  1. In that same AJKD blog, you also speak to the fact that “one of the major barriers to having chronic kidney disease diagnosed and treated by primary care providers is their lack of recognition that kidney disease is a ‘disease multiplier,’ especially early in kidney disease.” Can you elaborate on this point?

CKD impacts so many other health conditions, even common ones.

For example, joint pain is quite common in these older patients with type 2 diabetes and CKD. If a patient has knee pain, arthritis, or shoulder pain, he’ll want to take ibuprofen. As a CKD patient, he’ll be instructed to only take Tylenol. Accordingly, that patient will suffer unnecessarily.

Relative to more serious conditions, let’s say a patient has cancer and CKD. She would be excluded from participating in any clinical trial. That’s because we’re not sure of the safety profile of new trial drugs for people with CKD.

CKD is also a huge risk factor for cardiovascular disease, for heart failure, stroke, and heart attacks. Still most people don’t recognize it as a risk factor or ‘disease multiplier.’

The net is that CKD patients are only looked at for how close they may be to needing dialysis. If they’re not that close, it’s not considered a big threat, and the patients are primarily left alone.

“Closing the gap requires a team approach.”

  • Dr. Kramer
  1. Medicare seems to endorse a team approach for diabetes care. Why not for kidney care?

Good question. Medicare pays for diabetes case management, where a nurse will spend an hour helping the patient develop and learn how to implement their own care.

We don’t have that for kidney disease and it’s a huge gap.

Primary care providers are extremely busy and need the help of a “team” approach. Nurse education is key to the success here. And, of course, that needs to be reimbursed without cost to the patient.

  1. As I understand it, the US Preventive Task Force has no active recommendation for kidney disease screening. Is this true? Why is this the case?

That’s correct. There is no active recommendation for CKD screening, not even in high-risk populations. That’s because there is no level 1 evidence that proves it’s beneficial. As you can imagine, there haven’t been many trials executed in high-risk populations. Further, it takes many years for kidney disease to develop; it’s difficult to do trials over that extended period.

Fortunately, the Task Force is relooking at all the evidence. The National Kidney Foundation and the American Society of Nephrology (ASN) have provided input. The Task Force is also aware of the newer ADA and KDIGO guidelines which recommend CKD screening in patients with type 2 diabetes.

With all these voices, I’m hoping that a Task Force recommendation is forthcoming this year.

“If you need to decide between paying for rent or paying for parking
at the doctor’s office, it’s clear what you will prioritize.”

  • Dr. Kramer
  1. When the US Preventive Taskforce decided not to recommend CKD screening did that increase the inequity that exists in kidney care and mortality?

Good observation. I think it did.

We know that inequities already exist with the administration of other basic screenings, like pap smears and mammograms, based on poverty, education, race and minority status, access to healthcare and good insurance, and geography.

Where I practice, for example, there is no train service. If you don’t own a car, it’s nearly impossible to get to the doctor’s office. And, if you do, there are significant parking fees. If you need to decide between paying for rent or paying for parking, it’s clear what you will prioritize. Especially if you’re already living paycheck to paycheck.

If we enact screening for diabetes, hypertension, and based on family history, it should mitigate at least some of the inequity that exists.

  1. Can you elaborate on your study examining whole-exome sequencing published in November 2022? I’m interested in understanding where we stand with the identification of novel gene loci associated with diabetic kidney disease.

Across the world, there’s a large group of people conducting genetic analyses and trying to find new genetic loci for kidney disease. (Note: A gene is a sequence of DNA that encodes for a specific trait (traits may also be influenced by multiple genes). The position of a gene on a particular chromosome is called the locus (plural = loci)).

We believe that it’s likely that 25% of kidney disease is genetically mediated if not more. We haven’t found a way to utilize this data to improve clinical care yet or to develop medications. But we’re getting closer every day.

“Genetic and blood-based markers
will help us solve for CKD risk progression.”

  • Dr. Kramer
  1. How do genetic markers and blood-based biomarkers co-exist?

Genetic markers are ones that you have at birth. Blood-based biomarkers develop because of a disease that you have. Think about it this way: genetics establish the baseline risk and biomarkers account for environmental and other factors. Both will be important as we work to solve one of the world’s most significant health epidemics.

  1. I would think that the end goal is to have a “precise mix” of genetic variants, biomarkers, and early testing, to pivot patients away from even developing CKD or at least significantly mitigating its progression?

Absolutely, our end goal is to enable precision medicine or to make treatment as personalized as possible.

In clinical trials, we repeatedly find that individual patients do not always benefit from the studied treatment, where the larger population might. We’re trying to find out which patients are going to benefit the most from the intervention. Today, we’re giving the new kidney pills (AKA: SGLT2- inhibitors) to just about anyone who has a certain level of kidney disease. There may be, however, a subgroup of patients who will not benefit from the drug. Other patients may benefit a lot from the drug individually or when combined with other medications.

We don’t have enough information today to personalize the treatment to that level. With cancer, for example, we can now genotype the cancer itself, and determine which chemotherapy treatment is best for which patient. We don’t have that for kidney disease yet but imagine what it will be like when we do.

“I learned a lot from my mom, an early dialysis nurse,
and her patients.”

  • Dr. Kramer
  1. When reading about how you practice nephrology and your research, your passion for prevention is clear. I’m assuming this was heavily influenced by your mom, who was a dialysis nurse in one of the first dialysis units in Northeast Indiana. What was it like growing up in a household where you and your mom were impacted by CKD every day?

Yes, I lived with a single mom, who was a dialysis nurse. She did a lot of traveling, assisting patients with their home dialysis. I would often go with her. I saw many patients, hooked up to large dialysis machines, their overall health compromised, and their quality of life significantly impacted.

Some patients would tell me that they wished that I would grow up to be a kidney doctor and fix the problem altogether. My mom didn’t want me to follow in her footsteps either. She wanted me to focus on prevention so that patients wouldn’t need dialysis.

All these experiences set me on this life and career trajectory.

  1. You’re very focused on nutrition. How can diet be a prevention ‘tool’ for the development of type 2 diabetes, and therefore, CKD in type 2 diabetes patients?

The cycle begins with people eating more calories than they need. Those excess calories need to be stored somewhere, and different people have different “storage” capabilities in their body. The excess fat could end up being ‘stored’ in a patient’s abdomen, liver, kidney or even around his/her heart.

This can lead to insulin resistance, and the corresponding production of more insulin, until the patient’s pancreas starts to fail.

But, if we start early, at initial insulin resistance, we could help prevent a lot of illness. And diet is critical. When people eat processed foods, they are more apt to become morbidly obese. The processing of the food makes it so normal satiety doesn’t get turned off; you keep eating and eating. I don’t think that you can become morbidly obese by eating healthy foods. When you’ve eaten healthier foods, the body reads it as being ‘naturally full.’ You stop eating because you feel satiated.

“It’s exciting. Now we have ‘kidney pills’
proven to slow CKD progression.”

  • Dr. Kramer
  1. I asked this next question of Dr Tuttle, nephrologist at Providence Health, too. We’ve heard that doctors sometimes have trouble explaining the initial downward slope that occurs when a patient takes some of the newer SGLT2-inhibitor medications. How would you suggest that a primary care physician explain it?

If a patient knows that he has kidney disease, then you can talk to him in a way that’s easily understood.

For example, you can say that he already takes certain medications for diabetes, and this is his ‘kidney pill,’ a medication that is working to slow kidney disease progression, possibly preventing dialysis altogether. Further, the provider can say that in her (20-year) career, this is the first time that she’s been able to prescribe a therapeutic specifically for the health of the patient’s kidneys.

I would also suggest that the provider use the KDIGO heat map as a visual, indicating that the goal is to move the patient’s status from ‘red’ to a different quadrant, decreasing his/her risk for CKD progression.

  1. I’m interested in how the patients you see through Loyola may be different from those seen at the Hines VA. Are these populations very different? Do they experience different levels of care?

Interesting question.

At Loyola, we treat patients who are struggling in a variety of ways: food and housing insecurity, lack of good insurance coverage, etc. There are many ‘holes’ in a patient’s holistic care.

My patients at the VA tend to receive more of what they need. In one recent example, I saw a VA patient who had bad foot disease from his diabetes. I wrote him a prescription for diabetic shoes, and they were covered, no questions asked. The patient was happy, he was walking better, and it improved his basic quality of life significantly. I don’t think this would have happened – certainly, not as easily – with one of my Loyola patients.

So, I find that it’s ‘day and night’ in terms of comparing the care; the veterans benefit from more consistent, 360-care.

  1. As we close out our discussion, how would you summarize the three most important things to fix in CKD care today? Optimistically, what are the three things that are working?

Well, there’s always room for improvement. Here are the top 3 things that we need to fix right away:

  1. Too little awareness-building and education around CKD.
  2. Too little focus on implementing ‘team approaches’ to care.
  3. When we launch new medications (SGLT2-inhibitors), clinicians should receive corresponding guidelines, with a step-by-step approach for how and when to prescribe them and when to do follow-ups.

That said, we are making progress. Here are the three things that we are getting right:

  1. There is a lot of energy in nephrology today; many want to change the status quo of current care.
  2. We now have medications that are proven to slow progression of CKD and others that are on the horizon.
  3. We fought to remove race from eGFR equations as race is not a biological construct and we should never use the color of someone’s skin to determine how we treat them.

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