E2 – Specialty Pharmacy Stakeholder Perspectives: Patient Outlook

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In the second episode of the Specialty Pharmacy Stakeholder Perspectives series, Avalere is joined by Marc Boutin, CEO of the National Health Council, discussing the specialty pharmacy dynamics with a focus on the patient perspective.
“There is a huge amount of work to be done in journey mapping of the patient. At the core – and what we are beginning to see – is an understanding that how we deliver care must match the life flow of the person getting the care.” Marc M. Boutin


Kayla Amodeo , Associate Principal, Policy

Kayla Amodeo serves as a key subject-matter expert on Medicare Part B, drug pricing, and value assessment policy-related issues impacting the pharmaceutical industry, physicians, the federal government, and other stakeholders.

Kelly Brantley , Practice Director, Policy

Kelly Brantley co-leads Avalere’s Policy practice, advising life sciences companies, health plans, patient organizations, and other partners on how to shape and navigate the dynamic health policy environment.

Guest Speaker
Marc M Boutin, JD , Chief Executive Officer, National Health Council
Boutin became a patient advocate more than 20 years ago and has been a leading voice for greater patient involvement at every stage of the health care continuum.

This interview was originally published as a podcast. The audio is no longer available, but you can read the transcript below. For updates on our newly released content, visit our Insight Subscription page.


Kayla: Hello and welcome to Avalere’s second episode in a podcast series that is focused on specialty pharmacy stakeholder perspectives. My name is Kayla Amodeo, and I am an Associate Principal in the Policy practice at Avalere. I am joined by Marc Boutin, who is the Chief Executive Officer of the National Health Council and Kelly Brantley, who leads Avalere’s Policy practice. Today’s episode will focus on navigating specialty pharmacy dynamics, with a focus on the patient’s perspectives. So, to get us started as specialty medicines continues to consume a greater share of overall drug spend, it is very important to note the underlying trends in this dynamic and how patients are navigating this landscape. I will start with you Marc, broadly, in the specialty pharmacy landscape what trends are you seeing for patients? And have you seen any access issues? Or greater reliance on specialty pharmacy for patients lately?

Marc: Absolutely! There are several trends that we are seeing related to access and affordability but, I want to start by saying that specialty products are of incredible value in most cases. Specialty products have transformed the lives of people living with chronic diseases. In many cases they allow people to live a much more normal life and have largely been extraordinary for people living with chronic conditions. But from the perspective of access, we are seeing a lot of people with chronic conditions experiencing challenges getting to their medication. We are seeing a lot of different mechanisms in place, like step therapy and prior authorization, that can make it difficult for someone to get that specialty product. And once an individual has it for a year or changes insurance, in some cases many may have to go through similar access barriers again. If you look at individuals with lower economic status, many are having other access burdens. There may be issues with getting time off work or transportation. For many of us making decisions about how delivery systems work, we are not experiencing some of these access challenges. We may be able to leave work, go to a doctor’s office, and get these products. But for many people, that can mean the difference between of having to leave your children at home or taking off work, potentially losing your employment. And despite the access issues, many of these folks are also running into affordability issues, especially again if of lower economic status. When you combine the deductibles, premiums, copays, coinsurance, and other out-of-pocket costs, it can become an overwhelming burden just to get that very first product.

Kayla: Thank you for that insight. Kelly, are you seeing any trends for patients in this area?

Kelly: Sure! There are a couple of things I would like to talk about here. One being, that lockdowns and the other stay-at-home orders happening across various communities and states in this country have resulted in a confluence of three factors, as it relates to patients.

  • The first factor is confusion for some patients over chronic care and emergency care needs. What kind of care is essential? What kind of care is not essential? When should you seek care? And when should you wait to seek care? Questions that are not easy to answer, nor straightforward or simple.
  • The second factor is fear and anxiety over going to a healthcare facility. There is real fear and anxiety happening to people who go to the grocery store. So, walking to a healthcare facility where you may feel more at risk, presents additional fear and anxiety, on top of the confusion.
  • The third factor is the real threat to people with chronic conditions, with COVID-19. Most patients with a chronic care need understand that they may be a higher risk of getting and experiencing complications from COVID-19.

These three pieces come together to lead trends in shifting healthcare utilization patterns and avoidance of care. Down the road – in a few months – or when changes to lockdown lift, we are going to see a backlash of what that forgone care means in terms of how people will react to it and any unplanned sickness or further hospitalizations. That will be something we have to keep an eye out for.

Kayla: I want to drill down further to the COVID-19. It is all over the news and what all people are thinking about. Marc, what does the patient impact look like from your perspective? Given that you are our boots on the ground as you work with patients and patient advocacy organizations day-in and day-out.

Marc: COVID-19 has had a dramatic impact for so many people living with chronic diseases. If you think about how anxiety provoking it is to go to the grocery store now – you must put on a mask, bring hand sanitizer, think about how you will change your clothes after shopping, cleaning your grocery store products, keeping 6 feet apart from people at the store, and then even paying – it is incredibly anxiety-filled from what used to be a simple task. When you think of people with chronic conditions, they use the healthcare system on a routinely and regular basis to maintain their lives, functioning, and health to live a more normal life. This is very different for people living without chronic conditions, going into the healthcare system when they need to, due to an emergency or an infection. They go into the healthcare system to get fixed and then they can go home back to their normal lives. This is very different from people with chronic conditions who are going into the healthcare system regularly just to stay alive. For them to go into the medical system for an infusion or get an injection to maintain their health can be incredibly anxiety provoking. Think about if you had to get dialysis on a weekly basis, or if you needed to go in for chemotherapy or to get an infusion for an autoimmune disease. You are going right into the place where people are getting treated for COVID-19, where you are likely at-risk for contracting and facing further hospitalizations, or even death. We are seeing a large uptick in anxiety, depression, and substance abuse. For these folks, to go into the medical system, potentially get exposed to COVID-19, and then come home and potentially expose their families who have been staying home is incredibly anxiety provoking. I think we are going to see – and even anecdotally hearing – a lot of folks that are not getting their treatments. People not getting treated, and this creates a lot of downstream impacts once we are able to get out into our healthcare system and move around in society.

Kayla: Talking about some of those utilization shifts you just mentioned, Kelly, are there any insights on metrics or analysis around these utilization shifts?

Kelly: Sure! This is an important question. There has been a lot of press coverage and statistics from the healthcare field on significant deaths, avoidance of emergency care for serious needs like heart attacks, blood clots, or strokes. There is survey data being released and a handful of studies from across the world about avoidance of chronic care needs. So, dialysis, chemotherapy, follow-up care and prescription medications are what people are not always seeing to and putting off because of all the previous mentioned reasons. I have also seen the opposite reported, which is interesting. Patients are exploring telehealth in new rates due to obvious reliance, as well as exploring how their plans cover medication delivery and other types of healthcare services – without having to leave their homes. There is a new understanding that while people are avoiding going to a healthcare facility physically, they are looking to bring the healthcare facility to them. I do not think we have seen where all the chips have fallen yet, but we are in the early days of the reactions to these changes. All these changes have happened rapidly and without preparation due to the unforeseen severity of COVID-19. We have not seen the full extent of where these services will go, and I think solutions need to be designed with patients at the center. Patients will need to drive this process and inform their needs in this new lifestyle, to be compliant to their medications and to see their physicians. We want it to be easier to get the care they need with lower anxiety and fear.

Kayla: I think we have painted a great picture of how patients are currently navigating the healthcare landscape. The patient journey is a critical component for so many stakeholders to understand. I want to tie it back to specialty pharmacy. There are specific therapy programs designed to offer patients dedicated support to seamlessly merge education, digital tools, clinical expertise, and dedicated staff specifically for the patient by disease type. Thinking about how patients are currently navigating the landscape, Marc, any insights on how these therapy programs are working for patients? Are they helping patients? Are they being utilized?

Marc: The patient journey programs that have been mapped into specialty pharmacy delivery functions are a good start. But the reality is that patient journey mapping is an area that still needs a lot of work. There is great opportunity for patient input, patient engagement and patient codesign. Journey mapping has been around for decades, but when you look at these maps that have been produced, and show them to an individual living with a condition that was mapped, they will almost always bluntly tell you that the journey does not reflect their own experiences. When we dig into journey mapping work that has been done, you start to realize that the work has been done exclusively by researchers and academics based on other peer review literature but no input or codesign by patients. This is an area of huge opportunity that the National Health Council and members are working on. I think we are going to see tremendous changes. If you look at most journey mapping, it almost always begins at the point of diagnosis, yet a mass majority of people spend months or even years before they get a diagnosis. A big part of the map for a person’s journey is largely ignored, and then follow what researchers and academics think are relevant and important to that person living with the condition or disease. There is a huge amount of work to be done in journey mapping of the patient. At the core – and what we are beginning to see – is an understanding that how we deliver care must match the life flow of the person getting the care.

For years we focused on workflow in physicians’ office, while this is incredibly important, healthcare only works if it mirrors your life flow. At the end of the day, wellness is much more than health. For us, wellness lies at the intersection of all determinants of health – biology, social, economic, environmental – and your desired outcomes. Those desired outcomes are critical in understanding how to align health. If you do not understand the life flow of the individual and their family, care is often hard to deliver in achieving the optimal affect. I think our greatest opportunity is looking at how we deliver care for different types of people and subpopulations. Many of the programs that have been developed are good for someone like me. I have a good job, good insurance, and the ability to take advantage of it. But we need to get more granular and design programs that can deliver these services in an optimal way for different subpopulations. There are huge opportunities moving forward and this is just the start.

To echo what Kelly said, the movement to telehealth and home-based services is beginning to get at what is important to people. It is beginning to meet people in their life flow. I think the next couple of years, if not months, will be the shift in this direction.

Kayla: Kelly, would you like to add anything? And, if you could continue the dialogue in shifts in care that we have seen in patients and how folks are responding to it? As well as, what could stick around in the future?

Kelly: Absolutely! And I like what Marc said about the telehealth genie being out of the bottle. We are not going to move back in time where telehealth is a rarity. We have opened the door to this technology. And the technology brings a great deal of promise. Technology can remove transportation barriers, cost barriers, and time and distance barriers. Telehealth and other new technologies bring new promises.

At the same time, technology tools can uncover and expose systematic inequalities in our society. You need stable Wi-Fi and access to a smartphone, laptop, or other computer that is private enough to have a physician visit in a home setting. On top of that, there are the usual barriers that tend to exist and can be more complicated for people with lower socioeconomic status: coverage, cost, and utilization management. It can be difficult to find a provider who is willing to use telehealth. There is also the question of whether you can access your usual provider through telehealth, or whether your service is more like an emergency room visit, where you are only able to see the provider who is available at the moment. Does that undo some of the gains that we have made in ensuring that people have access to a steady source of providers?

That said, we are at the very beginning of this technological advance. Telehealth was so uncommon, even just 3 months ago, that the advances that have been made in 8 weeks are sort of remarkable. One can only imagine that more advances will be made over the coming months and years. I will reiterate—we are not moving backwards on this. The future is telemedicine, and the care that can be delivered in a different setting as we move forward.

Kayla: Marc, any closing thoughts on this current landscape, whether the phase we are in and where we are going?

Marc: Absolutely. Many of us are hearing that we are in a “new normal,” but the reality is we have not yet achieved our new normal. We are just completing the first of three phases. We have shut down our country and shut down our economies. We are just beginning to end that first phase and we are going to start to have limited openings of our society, our cultures, and our economies. People are going to start going out into the public, but it is going to be different in this interim. I do not believe we are going to get to the third phase in our “new normal” until we have widespread vaccine use, which is likely at least 12 to 18 months away. During this interim, we are all going to live differently, and our economy and culture are going to change quite dramatically. When we do have vaccines, are we still going to want to gather in large groups? Are we going to shake hands? Are we all going to go into offices?

We are starting to see that telemedicine can work quite well in many instances. We are starting to find that we do not actually have to be in the office and can still be productive in many lines of work. The ripple effects of those changes are going to be widespread, and I think we must anticipate what that means for how health is delivered. As Kelly mentioned, telemedicine is not going away. We have been advocating for that for decades – really trying to push that forward – and now, overnight, it is here. There is likely to be some unintended consequences, but the reality is that telemedicine is an equalizer for so many people that had difficulty getting to their healthcare providers. This is going to make their lives so much easier.

I once met a woman with diabetes who had to get on 2 busses and a train to get to her physician’s office. The challenge was that after an hour, because of her condition, she would have to use the restroom. This meant she would have to get off her bus, find a restroom, and then get back onto the bus. It could take 4-6 hours for her to get to her doctor’s appointment, and then 4-6 hours to get back. That meant giving up time from her work and her ability to make a living.

We are going to see several changes to how we think about health. As an advocate, I think it is an exciting opportunity for people to articulate more clearly and more comfortably what their goals are and how health can support them. Too often in our healthcare system, we think health is the end goal. The reality is that nobody lives for health. People do not live for their doctor’s appointments, their medications, for surgeries. They live to be happy, and health needs to support them in the goals that define happiness for them. As we get more comfortable being in our own homes, in front of our own computers, having that conversation with our doctors, our nurses, and other providers, I think we are going to be much more comfortable explaining what outcomes we want to achieve. We can begin to have the conversation about how health can support that and not simply to assume that health is the only outcome that people want. Those sorts of conversations are going to start to shift, and we are going to begin to personalize health in very different ways.

Kayla: Kelly, any closing thoughts from you?

Kelly: Absolutely. I have been thinking, throughout this conversation, about how complex issues require complex solutions, and that the answer to this is not going to be straightforward. Mostly because it is a complex issue, but also because not all healthcare services can be delivered remotely. Certain types of visits and treatments require an appearance at a physician’s office. There certainly could be home infusions, but there are times when only care received in a healthcare setting is available, so this idea that we could somehow flip a switch and telemedicine could solve all of the world’s ills is certainly an ill-conceived notion. It cannot happen that way. You cannot always fix a complicated problem with one seemingly simple solution.

This raises the issue of what can and should be done. When we think about social distancing continuing and, as Marc alluded to, until we have actual widespread testing and/or treatments or vaccines available, we are going to be exploring the bounds of what is available, what can get covered, how care can be delivered, and how people can access their medications, whether from a traditional brick-and-mortar pharmacy or through mail order.  There are lots of new technologies and new ways to explore the way people get care.

I think it took a crisis like this—a global pandemic—to shake us out of our in-the-box thinking about healthcare delivery and to get to a point where new delivery changes can benefit the patient and put the patient at the center. I have high hopes for the future of care delivery. Part of that hope is that patients are really driving the conversation and that solutions are designed with them in mind. I hope that whatever solutions come out of this are not one-size-fits-all, that they are flexible, and can maintain the idea that patients should be right in the middle of the entire conversation.

Kayla: This has all been so incredibly insightful and a necessary dialogue. I really want to thank you, Marc and Kelly, so much for joining us today. Your perspectives are invaluable to our listeners and to our Avalere community as well. Thank you all for tuning in. Stay tuned for more episodes in our Specialty Pharmacy Stakeholder Perspectives podcast series. If you would like to learn more, please visit us at Avalere.com.

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