Share your Chair Campaign is Bringing Awareness to Infusion Care

Brian Nyquist

Executive Director, National Infusion Center Association

Speaker 1:

Welcome to the Champions of Care podcast. I'm your host Shelby Skrhak. Today my guest is Brian Nyquist, executive director of the National Infusion Centers Association. He's been a dedicated advocate to access for care for all of 20 years. Through NICA, Nyquist advocates for patient access to in-office infusion and injectable medications among autoimmune and chronic disease communities. Brian, welcome.

Shelby Skrhak:

Brian Nyquist:

Thank you. Thanks for having me.

Shelby Skrhak:

On the podcast we cover a wide swath of topics but today we're tackling something very specific and that's infusion care. So Brian, can you give us a primer on infusion care for patients and how the National Infusion Center Association supports providers of infusion therapy?

Brian Nyquist:

Yeah, absolutely. Infusion therapy is the administration of medicine directly into the bloodstream, typically over the course of ranging from 30 minutes to several hours. Some of the medications that we're all familiar with taking are, you know, you go down to your retail pharmacy, you hand them your prescription, you get a vial of medications. Typically oral medications, but infusion medications are much different and many of the newer more technologically advanced medications that we're seeing would actually be degraded in your GI tract so if you took it orally, that medication would be broken down before it was able to get into your bloodstream, so those medications can't be taken orally. Instead they're administered directly into the bloodstream through infusion or indirectly into the bloodstream through injection. Injection under the skin is called subcutaneous injection, or injection into the muscle is referred to as intramuscular injection. Either route of administration, these medications are typically administered by a healthcare provider in a clinical setting.

Brian Nyquist:

There are three settings in which patients can receive these provider administered medications. The hospital, the physician office, or the home. The hospital is the most expensive care setting for these medications and most of them actually can't be administered in the home for various reasons. The most well known type of infusion therapy that we're all likely familiar with is chemotherapy, but today's infusion and injectable medications have extended well beyond the cancer space and are actually being used to treat many additional complex chronic diseases like autoimmune diseases in addition to rare diseases and diseases that were historically difficult or even impossible to treat with those conventional oral medications that we're all familiar with.

Brian Nyquist:

So these infusion medications are really changing the way that we manage some of the nation's sickest and most vulnerable patients that are living with some of the most complicated and challenging disease to manage, and the goal is obviously to improve these patients' quality of life and reduce the physical, emotional, and economic burdens of many devastating diseases that they're living with, and these types of medications in many cases have been the first treatment option that's been able to do that and effectively manage disease in some of these patients.

Brian Nyquist:

NICA was formed to support patients' access to these medications and support the non-hospital infusion providers that treat them so that these patients can access medications in a more economically responsible alternative to hospital care settings. Our mission is technically to improve patients' access to provider administered medications through advocacy, education, and resource development.

Shelby Skrhak:

I want to explore just the types of chronic diseases we're talking about. Because you're right. A lot of the awareness is probably in oncology but there are many non-oncology diseases that can be treated with infusion therapy. You started to mention some of those autoimmune diseases. Can you go into just how wide a spectrum of diseases that we're talking about? I mean I understand it could be anything from antibiotic applications to pain management applications, all of those sorts of things, right?

Brian Nyquist:

Yeah, absolutely. There are a lot of antibiotics that are needing to be administered directly into the bloodstream, as well as a number of other types of medications that are administered through either infusion or injection. One of the newer classes of medications are commonly referred to as biologics, and it's because they are biological products made in living cells, so they're very expensive to manufacture. They're very complicated to manufacture and so based on the molecule size and complexity for these medications, those molecules of drug would be broken down in the GI tract, which is why they have to be administered directly or indirectly into the bloodstream.

Brian Nyquist:

But I think a lot of folks, although they may not be familiar with infusion or biologics, I think a lot of people have heard of some of these autoimmune diseases that are being effectively managed with some of these medications like rheumatoid arthritis, inflammatory bowel disease, like Crohn's disease or ulcerative colitis, multiple sclerosis, lupus, psoriasis, psoriatic arthritis. So a lot of the diseases that people may have heard about but aren't really, really intimately familiar with are among some of those more challenging diseases to manage, and in many cases patients that are prescribed these types of infusion drugs, it's because those conventional treatment options like those oral medications just haven't worked in managing their disease progression and improving quality of life.

Shelby Skrhak:

So Brian, the world of infusion care can be a complex area to enter into because there's not a whole lot of understanding about it, and so I'm curious how you came to NICA and how your background helped you better understand the challenges that infusion therapy faces.

Brian Nyquist:

Yeah, so 20 years ago I had no idea what medical benefit was, right? So in the insurance, in our health insurance plan design, you've got services that are primarily covered across two benefits. You've got your pharmacy benefit, which covers all the retail kind of prescription drugs that we're all familiar with. Then you've got the medical benefit, which covers your outpatient services. You go to see a physician or a specialist. Those services are covered under the medical benefit, but what most people don't realize is there are a category of medications that are covered under that medical benefit because those medications like infusion drugs or injectable drugs are administered in that clinical setting incident to that physician visit. Once I started with NICA, I start digging in and really understanding the landscape. That was something that wasn't apparent to me before but I started understanding, and so that was the entire world that I was starting to live in when I came to NICA.

Brian Nyquist:

I would say before I came over to NICA, I was familiar with the concept of these therapeutic biologic medicines. I was doing some genetics research while I was an undergrad over 15 years ago, researching how we could manipulate the genome of other organisms to make different things, medications being one of them. Then immediately prior to joining NICA, I was the policy analyst for the Texas House Committee on Public Health in the Texas legislature when this biosimilar substitution bill came through, so unlike for conventional drugs, we have generics, which are identical, therapeutically equivalent alternatives to that brand name drug.

Brian Nyquist:

Well, that concept doesn't actually translate to these biologic medicines. It's technologically impossible to create an identical copy of these medications. The closest that we can really get is a drug that's biosimilar, and so there was a legislation that came through that established all sorts of parameters in terms of when it was appropriate to switch patients to different medications, et cetera. But throughout the course of working on that legislation, I'd really started to understand the benefit design, the challenges that patients are starting to encounter because these drugs are some of the most expensive drugs that we have, coverage is not great, and so that was really my first glimpse into that.

Brian Nyquist:

As I began visiting various infusion centers and meeting different patients, I quickly noticed a significant disparity in terms of standards of care as well as practice across these different facilities, and similarly as I've started working through the access challenges and barriers to care that patients were experiencing I began to notice notice trends. Then as I began assembling a panel of industry experts to work on some of these issues, we began developing and compiling best practices to try and reduce some of those disparities in terms of quality of care, standards of practice, et cetera, and then as legislators and rule makers were introducing ill-informed reform strategies that would be quite disruptive to access to care I started noticing disconnects between the kind of strategy that they're taking to reform this landscape and what the implications would be.

Brian Nyquist:

Then as I began developing relationships with hundred of infusion centers and hearing from thousands of patients, I noticed common themes and began to really start to understand what those challenges are, what those barriers to care are, what are the most critical threats to the sustainability of these non-hospital care settings, and what responsible reform would actually look like. Then obviously the absence of said responsible reform really became noticeable and apparent at that point.

Shelby Skrhak:

Brian, I understand that in your work speaking to legislators, there wasn't a very good familiarity or actually I'd venture to say a pretty good misunderstanding of what infusion therapy was and where it was being administered. Can you share that story?

Brian Nyquist:

Yeah, absolutely. This really just highlights the disconnect between legislators' strategies at reforming healthcare, right? Particularly this aspect of healthcare, and it's that disconnect between what they're trying to do, how they're trying to do it, and what's actually going to happen. In 2016 the federal government, right? The agency that runs Medicare essentially proposed reform to cut providers' reimbursement, specifically infusion providers' reimbursement to a threshold that would be financially inviable for them to keep treating those patients. They would be losing their shirt, losing money hand over fist to keep treating these Medicare patients, so we were concerned that hundreds of thousands of Medicare patients, some of our nation's sickest and most vulnerable patients that have extraordinarily high burdens of disease would have to be disrupted and basically sent into a hospital at significant increase in per patient per treatment costs. It's a problem for patients because they're struggling to afford their cost share associated with that treatment, and it's bad news for Medicare because they would be multiplying a huge volume of drug spend that much more.

Brian Nyquist:

So I went in and met with CMS leadership to go over our issues and try to find a viable and responsible strategy to where we could develop an all win solution, right? We can reduce drug spend, we can improve value for Medicare patients, and we can connect Medicare patients with the care that they need without being disruptive.

Brian Nyquist:

So I came to them with data. Showed here are five office based infusion providers. Here's the number of Medicare patients that they treat that they would no longer be able to treat if this reform were to be implemented, and then here's the actual dollar number of medical benefit drug spend that would be routed into a hospital at at least two to five times increase per patient per treatment, so help us understand how this strategy is actually going to reduce Medicare's cost liability for medical benefit drugs covered under Part B and how this is going to improve and reduce patient's cost share. How is it going to reduce patient's out of pocket cost? Because from my perspective, they're going to have to go to a hospital. It's going to cost them more. It's going to cost Medicare more. Obviously nobody wins.

Brian Nyquist:

So as I'm running through my data, trying to help them understand what the implications of this change would be, they interrupted me and said, "Wait a minute, time out. Are you telling me that these medications are being administered outside of hospitals and outside of oncology clinics in those hospitals?" I said, "Yeah, absolutely. That's exactly what I'm telling you actually. There's a significant proportion of that medical benefit drug spend that's actually going outside of hospitals, but what you're doing will send a huge majority if not all of that into hospitals. Not a good thing. Not what you guys are trying to accomplish."

Shelby Skrhak:

They came back and said, "Wait a minute. So are there just these five that we're talking about? Are there more of these?" And I had to then inform them that actually there are thousands of them, which is critically important because they represent the lowest cost care setting for many of these drugs. As you know, these people are very expensive to manage. They have extraordinarily high burdens of disease, physical, emotional, as well as economic, and it is absolutely critical that they effectively manage their disease, which would reduce other medical service consumption. So I know it seems counterintuitive, but by actually spending $2 on medication today, you'll save $10 in healthcare tomorrow.

Brian Nyquist:

That was probably quite an eye opener for them because the fact that they didn't realize that these infusion therapy centers really existed it sounded like.

Shelby Skrhak:

It was. Yeah. To say it was an eye opener is a little bit of an understatement. It was concerning. It was. It was shocking and disconcerting, but you got to start somewhere, so unfortunately that was the turning point and it's just unfortunate that it wasn't until 2016 and we're still seeing poorly informed and misguided reform strategies coming out of CMS and HHS as well as Congress up there in DC.

Brian Nyquist:

One thing that also in my notes here, and this makes sense considering the knowledge base or the lack of knowledge around infusion therapy, but you say that non-oncology specialties are a good 50 years behind oncology specialties in terms of infusion therapy. Will you explain that?

Brian Nyquist:

Yeah. Oncology care has been among the most expensive care in our healthcare system for decades and non-oncology specialties didn't really begin using these types of really expensive medications like these biologics until about 20 years ago. So oncology was the first specialty to really heavily integrate and use these more expensive class of specialty drugs, so they're much more seasoned when it comes to the coverage issues, the operational hurdles, and the access barriers, and then the threats to the sustainability of that care model compared to those non-oncology specialties.

Brian Nyquist:

It was as such that oncology spaces has over time come together. They've been able to band together unlike any other specialty. When a threat to that oncology care model arose, we saw instant mobilization across stakeholder groups with a level of coordination as well as collaborative momentum that no other specialty has really been able to achieve and operationalize.

Brian Nyquist:

So that's what I was trying to capture in that, so this whole level of coordination, synergy, and collaboration across stakeholder groups has evolved to be the oncology's secret sauce so to speak that has really preserved cancer patients' access to care and oncologists' ability to continue treating them. It didn't happen overnight. It took about 50 years, which is why I said that the non-oncology specialties are about 50 years behind. If the non-oncology specialties were able to band together with similar coordination and cohesion, their collective voice would outweigh that of oncology by probably a factor of 10.

Brian Nyquist:

There are just so many more patients in the autoimmune disease space and the rare disease communities and then providers across those different specialties that when combined together are just so much more numerous than the oncology space, but they've just been historically really unorganized and there hasn't been really a lot of collaboration across those specialties when most of these access issues and these operational threats and these barriers to care that patients are experiencing are not specialty related. They're not specialty specific. They're infusion specific. They're really medical benefit, drug access specific, and so that doesn't really fall to just one specialty. If it affects a rheumatoid arthritis patient, it's likely going to affect a Crohn's disease patient and a multiple sclerosis patient and a lupus patient as well as a cancer patient.

Shelby Skrhak:

So that's the unfortunate reality of the situation from a coordination, cohesion, and collaboration perspective and it's something that NICA is trying to work on. It's one of the reasons we were formed is to try and span across those non-oncology specialties to defragment those efforts and try and build the coordination, the cohesion, and drive collaborative momentum to overcome these shared challenges and threats.

Brian Nyquist:

Well, speaking of that then, how do we bring this subject more to the forefront and promote a better understanding of the benefits and the challenges that infusion preparations outside of a hospital setting face?

Shelby Skrhak:

It's the million dollar question, but step one, do the podcast. Check.

Brian Nyquist:

Right.

Brian Nyquist:

In all seriousness though, we do have a lot of work to do to educate legislators, regulators, insurers, as well as the general public. Most people just really don't understand what infusion patients are going through. They don't understand the disease management journey these patients have endured. They don't understand the value that effective disease management has brought to the lives of millions, and they don't understand the challenges that providers are facing in providing care for these patients, and so they're really seeing a struggle among these decision makers, legislators, regulators, et cetera to see past the dollars. To see past the dollar signs that are being spent on these medications.

Brian Nyquist:

So they've actually been really blind to the longterm cost savings associated with reducing healthcare consumption, so if we can effectively manage these patients to achieve a state of clinical stability where their disease state is stable, it's not progressing, they don't have to go see their doctor as much, they don't have to go see their specialist as much. They're not having to get labs and diagnostics and blood tests as frequently and they're avoiding having to go to the emergency room in the case that their disease flares and it becomes a medical emergency. They're not having to get as much hospital care either.

Brian Nyquist:

So that whole aspect of this care coordination, care management continuum is really lost on the majority of basically anybody who hasn't been in this delivery channel. Anybody who doesn't have an autoimmune disease or doesn't know somebody that's been going through this type of care. Most people just don't understand how difficult it is, how challenging it is. They don't understand that having access to that right drug at the right time in the most economically responsible setting can be the difference between being disabled and being able to work, retaining the function of your hands, being able to play with your kids.

Brian Nyquist:

A lot of the things that the general population, the general public take for granted are things that these patients are struggling with everyday, so there's just an enormous awareness deficit that we're trying to solve. We're trying to figure out how to solve that problem, so we've engaged and we built out a robust education program, multifaceted, multichannel to try and start building some of that awareness. We've created an awareness campaign that we call Share Your Chair. We're encouraging infusion patients to take a selfie when they're at their infusion center getting their treatment and share it across their preferred social media channel with the hashtag ShareYourChair in an effort to help us generate and build awareness.

Brian Nyquist:

One characteristic of these patients that I think is really different from cancer patients is most of these folks don't look sick on the outside. They don't look like they're physically ill or that they're battling a chronic disease. Unlike a lot of cancer patients, particularly if they're on chemotherapy or radiation therapy. They've lost their hair. They don't look particularly healthy. That's why a lot of these autoimmune diseases are called invisible illnesses or invisible diseases, and so that's kind of a big emphasis of that Share Your Chair campaign is to try and help the public understand that, look, you know, your kids' teachers, your pastor, the person that's checking you out at the grocery store could have one of these diseases. They could be getting infusion care, and that could be the difference between them being a productive member of society and just having that significantly reduced quality of life.

Brian Nyquist:

So it's a big challenge. We're trying to figure out how to overcome that challenge, but it's definitely going to take a village, so we're working to build the relationships, build collaboration, and work with other groups that represent patients within these different disease states and within these different specialties to try and educate decision makers, legislators, regulators, insurance companies, and then also the general public as well.

Shelby Skrhak:

Well Brian, I think this is a fantastic start to that education campaign because you're right. I don't think there's a great understanding of the challenges that chronic disease patients face, and I think this is a great reminder of the fact that there are people trying to function every single day and they are doing the very best they can, but they need that medication and access to medication is such a prevalent topic for so many people in the country, but imagine it 10 times more difficult when you're dealing with a medication that has to be injected or subcutaneously delivered. Those challenges can seem unsurmountable, and so the work that NICA is doing is noble and I'm excited to see what topics we cover in future podcasts. So Brian, thank you so much for joining me.

Brian Nyquist:

Thank you so much. Really appreciate the opportunity.

Shelby Skrhak:

That does it for this episode of Champions of Care podcast. Until next time, I'm Shelby Skrhak.