Welcome to Aging Health Matters, a podcast from Kepro, a Beneficiary and Family Centered Care Quality Improvement Organization. We plan to cover healthcare topics for the Medicare population. Information in today’s show may help you or someone you know in their healthcare journey. Thanks for joining us. Now let’s get started.
Nancy Jobe
Hello everyone and welcome to another edition of our podcast, Aging Health Matters. This is Nancy Jobe, Outreach Specialist for Kepro, here to introduce today's topic. And as a reminder, being the QIO for 29 states, we have three key services for people who have Medicare: They are discharge appeals, quality of care complaints, and Immediate Advocacy services. You can find more information on these topics at our website, www.keproqio.com. Today, we're going to be talking with our guest, Sarah Eve Schaeffer, about end-stage renal disease and the End Stage Renal Disease Network, or you may hear people talking about it called ESRD. Sarah, could you give us a little bit of background about yourself and tell us about you?
Sara Eve Schaeffer
Sure. Thanks for having me today. My name is Sarah Eve Schaeffer. I've been in kidney care for about 15 years. I've worked just about across the entire spectrum of kidney disease, starting as a registered dietitian. I started in the hospitals, and then I moved to outpatient. I managed multiple clinics for a large dialysis organization.
I've led strategic operations for a CKD, a chronic kidney disease, population health company. I'm on the Board of Directors of the American Association of Kidney Patients, and I also lead national projects for Health Services Advisory Group, or HSAG, which we'll talk about today who holds nine CMS contracts, specifically related to ESRD and kidney transplant.
Nancy Jobe
You have quite the background. So I'm glad we have you as a guest. I think you will be able to answer all of our questions today. What is end-stage renal disease?
Could you kind of explain what that really is?
Sara Eve Schaeffer
So end-stage renal disease, also called end-stage kidney disease also called kidney failure, is the last stage of chronic kidney disease when a person's kidneys are no longer able to work at a level that sustains life; therefore, some sort of kidney replacement therapy is needed. It does the job of the kidneys that are no longer functioning. The most common causes of ESRD in the United States are diabetes and high blood pressure, and it's important to note that it's irreversible.
Once that damage is done to the kidneys, it can't be undone. So when we think about renal replacement therapy, dialysis and transplant are the two main treatment options with kidney transplant being the gold standard. About 37 million Americans have CKD, some stage of chronic kidney disease, and many people don't see a kidney doctor or a nephrologist. About 1/3 of folks who have end-stage are diagnosed in the ER with that last stage of kidney failure. It's also really important to note that it disproportionately affects non-white communities, so African Americans, Hispanics, Native Americans or indigenous people, and Asian Americans are at an increased risk for kidney disease.
Nancy Jobe
That's something I didn't know. Thank you for that information for sure. How were you able to reach out to those people as far as the symptoms that they have that they should be getting attention before it's like the crash?
Sara Eve Schaeffer
When folks are in earlier stages of chronic kidney disease, it really centers around getting those preventative screenings and seeing the doctor. In order to diagnose chronic kidney disease, someone needs actually two lab tests to confirm it, and so what happens is a lot of people maybe get one of them but don't get the second follow-up one. Some of that is changing now. There's been some advances and innovations in how we treat CKD with new medications on the market and it getting more attention, but really it just comes down to the basics of maintaining your weight, managing diabetes, managing your blood pressure, and seeing your doc.
Nancy Jobe
Thanks. So why is it such a big focus for Medicare?
Sara Eve Schaeffer
I'll start with a little bit of background. So Medicare, CMS, is actually the primary payer of benefits for all adults with ESRD since 1972. And so there's a 30-month period where if someone has another insurance, that would be the major payer, but after that, Medicare takes over. So that means about 800,000 Americans right now have end-stage renal disease with about 500,000 of those folks on dialysis and about 300,000 with a working kidney transplant. So it's a focus for CMS because ESRD is really complex chronic disease management.
It requires a wide-ranging care coordination and high patient engagement levels whether someone's on dialysis or transplant. ESRD care typically includes high medication utilization, frequent hospitalizations, other outpatient provider appointments. There's a risk for other health conditions. It can be a lot. It's a lot for chronic disease management at an individual level, but also at the system level. So because of those two things, one that Medicare covers ESRD care for all adults, and two, that it's a pretty complex disease to manage, CMS is really focused on ensuring quality of that care, supporting patients and families through engagement and quality improvement activities, and then addressing those health disparities that are seen in the kidney community.
Nancy Jobe
From what you're telling me though, ESRD is not necessarily something that the older population has. Medicare will pick up payment for these services at whatever age is needed. Is that correct?
Sara Eve Schaeffer
That is correct. It's very interesting. President Nixon actually signed this in 72.
It's really universal care for this one disease state. So someone even, let's say someone in their 30s who's working and has commercial insurance, they would maintain their commercial insurance for the first 30 months. But then after that, Medicare would become the primary payer. And so that's really where we see a desire for health equity and care and cost containment because CMS covers all adults who reach kidney failure.
Nancy Jobe
So explain to me what is this ESRD network that I hear about?
Sara Eve Schaeffer
The ESRD Network started in 1978, just a few years after we started this universal care for ESRD. Again really for all those things that I've mentioned, to really ensure quality care, provide support for grievances, folks on dialysis or a dialysis center three times a week until or unless they receive a kidney transplant or do dialysis at home. So the network is there to provide support for those grievances they may have, help people get back to work or receive a kidney transplant, to do dialysis at home. Over the years, some of the clinical targets or issues have changed, but the networks are still fulfilling their original purpose to maintain quality and patient engagement for everybody with ESRD.
So there's 18 ESRD networks in CMS-designated geographies, and then each network works with all of the dialysis facilities and kidney transplant centers in that region. Nationally in the US and its territories, there's about 7800 dialysis facilities and about 250 kidney transplant centers. That's a pretty large swath of providers to work with. And then the networks in their region really become that independent structured system to lead quality improvement and care coordination. They become the local experts on the disparities and the patient needs of that in their area, and they're also a great resource then for providers and other stakeholders, like the QIN-QIOS or the Department of Health or survey agencies.
Nancy Jobe
Where would somebody find out what the ESRD network is in their area? Where would they look that up at?
Sara Eve Schaeffer
Some of the networks make sense when they're just one state, like Texas is one state, Florida is one state, and then several are a combination of states. And California is actually split in half because it's so population-dense. So I think we'll put in the show notes, but the ESRD NCC, which we'll talk about in a moment, has a map where people can click on and find their state and see which ESRD network it's in. And then they'll have all the contact information for the Executive Director, data managers, patient service managers, and quality improvement leads.
Nancy Jobe
The ESRD networks themselves, explain to me how they're working with the different dialysis centers. They're not actually the dialysis centers, correct? Explain that to me.
Sara Eve Schaeffer
It's good to think about this too for these CMS contracts, right, like we're provider and treatment agnostic. And so the networks have no skin in the game, so to speak, as far as where someone treats, so really they're focused on collaborating with the dialysis facilities for root cause analysis and data-driven quality improvement activities. So for example, each contract that CMS or statement of work, there's certain goals for the network across topics like adding patients to the transplant wait list or reducing avoidable hospitalizations. And so all of the facility data in that area in that network goes to the network professionals, and then they can comb through it, and they can see that this dialysis center has really high hospitalization rates.
And so they'll reach out to them and do some root cause analysis. Maybe they'll help in-service staff members. They'll have resources for their medical director and start the process improvement, so that facility then can have lower hospitalization rates. They do that mostly virtually since the pandemic. We've done it virtually, but actually this year, we just restarted with network facility staff going on-site to centers and really talking about the resources the networks can provide and sharing best practices from the best performers.
Nancy Jobe
You mentioned something about an NCC. What is that exactly?
Sara Eve Schaeffer
So that's another contract. And it's funny, you know, some of these CMS contracts might not be well known, but there is a strong cadre of professionals dedicated to serving the ESRD patient and provider population. And one of them is the NCC, so the National Coordinating Center. The NCC is the only nationwide ESRD quality improvement and special project contract. We work closely with Division of Kidney Health Leadership at CMS. This is the contract I work on. We're adjacent to the networks. We don't oversee them, but we do the data.
Each region takes their data, and then we roll it all up to show CMS at the national level where the data is trending and tracking, what interventions are working, what areas need more attention, what's working that we could scale, and then the NCC also does programming. So we have a national patient and family engagement network, which is about 90 patients, who co-create resources for patients by patients. The NCC also develops change packages across clinical topics. We interview top-performing facilities and share their best practices. We hold monthly learning events for patients and professionals. We provide new patient information and do other special projects related to COVID transplant and home dialysis at the national level, kind of bringing it all together.
Nancy Jobe
And that's a lot.
Sara Eve Schaeffer
Yes, it is. It's a lot behind the scenes. People might not think about this, but there's a lot of us kind of behind the scenes really working on this, and I think what makes it so special, the networks, the NCC again is that we're provider and treatment agnostic. Our intentions are pure. We just want to support people, all people with ESRD, all providers, all professionals, dietitians, social workers, nurses, PCTs, health systems with the information and tools that they need to provide the best quality care and make informed health decisions.
Nancy Jobe
There are a lot of providers involved and players involved in the ESRD project. I'm sure a person with end-stage renal disease themselves, they're just seeing the dialysis center. But there's a lot of people putting that all together it sounds like.
Sara Eve Schaeffer
Correct. Yes, behind the scenes, there are a lot of us.
Nancy Jobe
What else could you tell us or would you like to share with us?
Sara Eve Schaeffer
There's one more ESRD contract that CMS holds that is really important, and I think that COVID has really underscored that. And that is the Kidney Community Emergency Response; we call it KCER. I know there's so many acronyms, KCER, and because dialysis patients specifically are dependent on dialysis for life, anything that disrupts those daily operations must be quickly addressed. So KCER is responsible for preparing and responding to natural disasters. I live in Florida.
We have hurricanes, out west there's wildfires, all across the country, there’s natural disasters, emergency alerts, medication recalls, and then also proactive disaster planning for patients and providers. KCER brings stakeholders together who might not otherwise meet and discuss at the national level. So think again about the CDC and all the provider organizations, DaVita, Fresenius, ARA, all those independents. They might not come together in any other format to really prepare and respond to these emergencies. And KCER was a huge force in the ESRD response to COVID in 2020; it was truly life-saving work. And I think after the public health emergency, we all really appreciate having these emergency systems ready staffed and in place should things happen.
Nancy Jobe
Well, it definitely sounds like the ESRD network and different groups that are involved in it are a very well-oiled machine, it sounds like.
Sara Eve Schaeffer
A lot of us who work on the CMS contracts, we've started in the dialysis facilities, and I think that really lends a realness to the work. We really understand the issues that are going on, and we just really try to stay in touch and be a great support for all of the patients and families and providers and health systems to get that quality care and patient engagement and reduce disparities in kidney care.
Nancy Jobe
I knew about ESRD, and I knew dialysis, but I really didn't know what all went into it. So I really appreciate you giving your time to share that information with us.
Sara Eve Schaeffer
For sure, I'm always happy to talk kidney.
Nancy Jobe
That's good. Alright, if you'd like more information about our services, please feel free to sign up for our newsletter as well as subscribe to our YouTube channel. Our Helpline phone number as well as a link on our website to sign up for our newsletter will be available in the show notes. Thank you again for taking this time out and sharing all this information with our listeners, Sara Eve. Thank you for listening. And please stay tuned for our next episode of Aging Health Matters.