Today, I want to lay out what it would look like to pay for kidney health, rather than kidney disease—and pay for Americans with kidney disease to actually get good outcomes, rather than the endless, life-consuming procedures that you all know so well.
As Prepared for Delivery
Good morning, everyone, and thank you so much for welcoming me here today. Thank you in particular to everyone at the National Kidney Foundation for inviting me to speak.
It is always a privilege to address groups of patients and patient advocates. You represent such an important voice in American healthcare.
Patient voices have helped build for our country a health system with better quality and more choices than any other system on earth.
But, unfortunately, for all of the successes of American healthcare, in certain places, we are lagging. In some areas, our outcomes are downright disappointing—especially given the resources we invest in our system.
You all know better than most that one of these areas is the way we prevent, diagnose, and treat chronic kidney disease.
I want to lay out to you today where the Trump administration sees some of the biggest failures in our kidney care policies—and why we believe we can begin addressing them in the years to come.
Just how bad is today’s situation? More than 30 million Americans have some stage of kidney disease—almost the population of the state of California, afflicted by one disease. In 2016, kidney disease was the ninth leading cause of death in the United States.
At the final stage of kidney disease, end-stage renal disease, the kidneys can’t function on their own, requiring frequent dialysis or a kidney transplant.
But, unfortunately—and I really don’t have to remind everyone in this room—dialysis may keep you alive, but it is one of the most taxing treatments modern medicine has to offer.
One hundred thousand Americans begin dialysis each year, and one in four of them are likely to die within that same year.
Meanwhile, kidney transplants are hard to come by. There are more than 100,000 Americans currently on a waiting list for a transplant.
Another way to understand the huge burden of this disease is just to look at the financial cost. In 2016, Medicare spent $79 billion to cover people with kidney disease, and $34 billion on patients with ESRD, adding up to $113 billion in total spending. That represents more than one in five dollars we spend in Medicare.
Even at this tremendous cost, what kidney patients endure is grueling. I know this firsthand, because my dad suffered from end-stage renal disease.
Like others with the disease, my dad initially had to go to dialysis three or four times a week. I saw how draining it is.
Thankfully, he was no longer working full-time, so these burdens were somewhat more bearable. But for many Americans, dialysis can be not just painful but also debilitating, driving them out of the workforce and disrupting their lives dramatically.
I realize that I’m preaching to the choir here. You all know the burdens kidney failure and our current system of kidney care put on you, your families, and so many other Americans.
Thankfully, as has been true for many of you, my dad’s situation did improve.
First, we figured out that he could receive peritoneal dialysis, allowing him to be dialyzed at night. This was a revolutionary change in his lifestyle. Then, we were blessed enough that he was offered a kidney transplant from a kind and generous living donor.
My dad’s story has a happy ending.
If you want to read his take on it, by the way, he wrote an op-ed about it for the Salisbury, Maryland, Daily Times—he was a natural patient advocate!
My dad and I know he was lucky. Too many Americans don’t shift to more convenient dialysis options, and too many Americans never get a chance at a kidney transplant.
But with better policies, we can make these outcomes possible for many more Americans, and that’s what I want to talk about today.
One of the key reasons for our failing policies is that kidney care in particular has some of the worst incentives in American healthcare.
In fact, kidney care represents a huge opportunity to deliver on the promise of one of the priorities I’ve laid down as HHS Secretary, getting better value out of American healthcare.
Many of you are likely familiar with what is known as the transition from “volume to value” in healthcare. Another way I like to talk about this is saying that we need to shift from a system that pays for sickness and procedures to one that pays for health and outcomes.
There is no better example of an area that demands this shift, and the consequences of inaction are higher nowhere else, than in kidney care.
Today, I want to lay out what it would look like to pay for kidney health, rather than kidney disease—and pay for Americans with kidney disease to actually get good outcomes, rather than the endless, life-consuming procedures that you all know so well.
I’ll mention three particular areas we’re thinking about, and already working on, to focus our efforts on kidney disease.
First, we need more efforts to prevent, detect, and slow the progression of kidney disease.
Second, we believe patients with kidney failure deserve more options for treatment, from both today’s technologies and those of the future.
Third, we’re going to look at how we can deliver more organs for transplants and develop wearable and implantable artificial kidneys, so we can help more Americans escape the burdens of dialysis altogether.
One reason we can make strides in this first area, prevention, is that, as many of you know, we have so far to go on awareness and detection.
Ninety-six percent of Americans with kidney damage or mildly reduced kidney function are unaware of it, and as many as 48 percent of Americans with stage four kidney disease who aren’t on dialysis still don’t know they have it.
Meanwhile, many of these people with some stage of kidney disease have other health challenges that need attention too, including diabetes and high blood pressure.
There are at least two main ways we can do a better job of preventing or slowing progression to later stages of kidney disease and kidney failure: better investment in effective efforts to treat early kidney disease and related conditions, and researching what drives the progression of the disease.
Happily, we already do know a good deal about what works.
We incorporated the first-ever preventive services program into Medicare this past year, focused on diabetes, thanks to early development work by the Centers for Disease Control and Prevention and the National Institutes of Health.
Today, Medicare covers most patients with kidney failure. But we don’t begin spending a great deal on these patients until they’re already sick.
It is the epitome of a system that pays for sickness rather than health, and this administration is intent on shifting these priorities.
But for all we do know about prevention, we don’t know much about how to predict which patients’ conditions will worsen at what rates, and why.
This has held back targeting of prevention programs, but it has also left patients in the dark about their own condition and what they can do about it.
HHS is now undertaking investments to help change that.
In 2017, NIH began the Kidney Precision Medicine Project to better understand the different types of kidney disease, and how they progress, using the same kind of techniques that have yielded leaps forward in targeted cancer treatments. Enrollment for this study will begin in the next several months.
We’re also pursuing research about what’s known as the APOL1 gene. Variants of this gene, frequently found in African Americans, are strongly associated with kidney disease and make transplants from patients with it much less successful. Enrollment in an NIH study on this gene in particular will also begin within the next several months.
Further, as we learn more about kidney disease, we will examine ways to help spur drug development to help prevent or slow the condition.
Shifting our reimbursements so that we’re actually paying to prevent kidney failure, rather than just paying to treat it, will help drive research in this area as well.
There is a final advantage to better identification of kidney disease. Earlier detection means we have more time to educate patients, help them make informed choices about their treatment options, and prepare them for treating kidney failure as they wish—if and when that becomes necessary.
This extra time allows an optimal start for treatment, whether that’s a pre-emptive transplant without dialysis, starting home dialysis with a functioning catheter, or starting peritoneal dialysis with a safe, permanent access.
In other words, better prevention and detection efforts will help expand options for patients, that second focus I mentioned.
Today, 88 percent of Americans with ESRD start treatment with center-based dialysis. Just 12 percent start treatment at home with hemodialysis or peritoneal dialysis. This is the complete opposite of the situation in some of our peer nations, including Hong Kong, where more than 80 percent of patients benefit from some form of in-home dialysis.
Heck, Guatemala is at 56 percent peritoneal!
Improving this situation dramatically, as we ought to do, will mean examining the payment incentives in our programs today, while expanding access to new technologies.
There may be no better example of how outdated payment systems distort Americans’ healthcare, and lower its quality, than what we have in kidney care today.
As many of you know, while peritoneal dialysis or home hemo may not be possible for absolutely everyone, they can often be more convenient, better for patients’ independence and self-sufficiency, and better for their physical health.
But in many ways, today’s policies bias providers toward center-based dialysis.
For one, we believe we may simply underpay for these alternatives, even though we know how much they can benefit patients’ lives.
It’s also more appealing for a dialysis company to add patients to a center where one machine can accommodate multiple patients than it is to provide new services to each patient at home.
But that isn’t providing the care patients deserve, and we have the power within HHS to test out significant payment changes to boost home dialysis.
We already have some experience with new incentives in this area. We began testing one innovative payment model in 2015 that allowed traditional dialysis providers to offer more comprehensive care for their patients, in exchange for a share of the savings if their patients’ outcomes improved.
It worked, remarkably well: In just the first year, the model saved almost $2,000 per patient per year in Medicare costs, reducing hospitalizations while maintaining quality of care.
My senior advisor for value-based care, Adam Boehler, runs the CMS innovation center that puts out these models.
He has overseen our efforts on kidney care, and is now looking hard at new models for patients not just with ESRD, but also stage 4 and 5 kidney disease.
Changing our payment systems could also spur adoption of new, cutting-edge technology. In fact, so flexible is some of the technology we have today that HHS’s emergency-response arm is currently in the process of testing out portable dialysis machines for use after natural disasters.
As some of you may know, during 2017’s devastating Caribbean hurricanes, the federal government helped transport dialysis patients from U.S. Virgin Islands to the U.S. mainland to continue their treatment, where many of them stayed for an extended period of time—a costly journey that we could make unnecessary in many cases.
The kind of capabilities we need for these disaster settings, like the ability to use publicly available water rather than medical-grade water, will be useful in expanding portable dialysis access for Americans in all kinds of other situations.
The most transformational change for a kidney patient’s life, of course, is not portable dialysis but a kidney transplant—the third area of focus I want to discuss.
One key step is, again, reorienting our payment incentives. Today, dialysis companies are actually disincentivized from helping patients get ready for and find a transplant.
Even though a transplant improves health and dramatically lowers the cost of care, from the perspective of a dialysis company, every transplant is one less customer.
A system that pays for health, as we envision for all of healthcare, will pay for the healthiest possible outcomes.
Ideally, we’d want to offer dialysis providers incentives to get patients off dialysis through transplants.
We want to make the outcome that’s good for the patient and good for the system good for their business, too.
Today, we also simply don’t have enough kidneys to meet demand, and there is room for improvement here as well.
One of the first steps is ensuring that we’re not discarding healthy, safe organs—which we believe we may be doing today.
Through a federal advisory committee on blood, tissue, and organ safety, HHS develops guidelines to identify organs at risk for unexpected transmission of HIV, hepatitis B, or hepatitis C. These guidelines were last updated in 2013.
Since then, the science has been advancing. We’ve been able to develop and analyze new data about our testing capabilities for HIV, hepatitis B, and hepatitis C, and the kind of surety they can provide around organ safety.
I am pleased to announce to all of you for the first time, today, that HHS’s technical experts will be submitting scientific evidence next month to our advisory committee that will take advantage of this new science and offer new opportunities to improve organ utilization.
We could also be doing more to improve support for Americans who are generous enough to consider being a living kidney donor.
My family has been a beneficiary of such generosity, and I know many of you have been too. But today, donors are still on the hook for all kinds of costs: not just lost wages and other expenses, but also the manageable but real health risks they may deal with down the road.
This is an area HHS is already exploring: Last fall, through the Health Resources and Services Administration, we put out two funding opportunities to support living donors.
The first will provide for continuation of a program to compensate donors travel and other expenses related to donation, while the second will support a new pilot program to compensate donors for lost wages.
Transplants, however, are not cures, and about 20 percent of transplant patients require dialysis again within five years. Investing in future technologies is critical to creating more choice for patients, and yet our payment policies, again, have done little to drive investment in this space.
So last year, HHS launched KidneyX, a public-private partnership with the American Society of Nephrology, to spur development through prize competitions of transformational products like wearable or implantable artificial kidneys, which could provide patients with higher quality of life.
In our first competition, “Redesign Dialysis,” we’re encouraging and supporting innovators to develop new technologies and approaches that could usher in the next generation of dialysis products.
First round submissions closed last week and we got 165 submissions, including a number of proposals that could help advance an artificial kidney. Submissions came not only from the kidney community but from engineers, medical device companies, and many others. We’re thrilled with this level of interest, and it shows what a prize competition can drive in an otherwise neglected investment space.
So what I’ve described today is a number of places where we believe we can significantly improve kidney care in America, and some areas where we’ve already begun to ramp up our efforts.
None of you need a reminder of how long some Americans have been waiting for such a concerted effort. But I want to share something striking.
I recently saw a page from a late-1960s officers’ manual for the U.S. Public Health Service Commissioned Corps, the uniformed medical and public health staff who serve HHS and the American people.
Some of them, in fact, work with kidney disease and diabetes patients in our Indian Health Service hospitals today.
The manual offered a hopeful vision for what the second half of the 20th century would portend for medicine. There would be huge advances in cancer research—we got those. We’d see the elimination of more infectious diseases—we got that.
And we were promised, I quote, a world where “small-sized, inexpensive, artificial kidneys may be available in the home for use overnight.”
This was the promise of the Public Health Service manual half a century ago.
We have some of that technology today—and yet too many Americans still suffer without it.
Now, we could take the gap between that promise, and the reality of so many Americans still relying on the same technology we wanted to leave behind half a century ago, as a reason to be shocked and frustrated.
But I know we’d all rather take up the spirit of hope that animated those words. We have the technology to revolutionize the lives of America’s kidney patients—of our loved ones, and of some of the people in this room.
We’ve waited long enough. We just need renewed ambition and the right policies.
President Trump has the kind of ambition we need to deliver much better care for Americans, even if it means bold change—and I’ve laid out for you today some of the policy ideas we need.
So I’m asking all of you today: Engage with us on the ideas I’ve mentioned today.
Work with us as we think about how to improve prevention, treatment, and transplants.
Together, we can deliver much better care, and longer lives, for Americans with kidney disease.
Thank you very much for having me here today.
