The Future of the Alzheimer’s Association: Interview with Dr. Joanne Pike and Harry Johns

Transcript

Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. Today I'm joined by two special guests from the Alzheimer's Association. Since 2005, Harry Johns has served as the chief executive officer of the Alzheimer’s Association. During his 17-year tenure, the Association has supported tens of millions of people annually across its nationwide community programs, 24/365 helpline, and collaborations through alz.org, as well as achieved significant public policy gains, including up to $3.5 billion increases in federal research funding annually. On top of his work at the Alzheimer’s Association, Mr. Johns is a trustee and former chair of the World Dementia Council and president and CEO of the Alzheimer’s Impact Movement (AIM), a separately incorporated advocacy affiliation of the Alzheimer’s Association. Dr. Joanne Pike has been working at the Alzheimer’s Association since 2016, having previously served as chief programs officer and chief strategy officer. Dr. Pike currently serves as president of the Association. Before working with the Association, she spent 13 years in leadership positions at the American Cancer Society and three years as the Preventive Health Partnership’s executive director. Dr. Pike is set to succeed Mr. Johns as chief executive officer of the Alzheimer’s Association, as well as president and CEO of the Alzheimer’s Impact Movement, as of January 2023. Now welcome to Dementia Matters, Dr. Pike and Mr. Johns.

Harry Johns: Thank you, Dr. Chin

Dr. Joanne Pike: Thank you.

Chin: I appreciate you both taking your time to join us. I'd like to start with you, Mr. Johns. You've had an incredible 17 year tenure with the Alzheimer's Association. What got you interested in Alzheimer's disease specifically?

Johns: You may know I worked in cancer for many years myself, as did Joanne. I got one of those mid-career calls from a search firm about this job. I turned them down, but then
within about two years I got virtually the same call from a different search firm for the same job. At that point my mom had the symptoms. While I got the chance to become CEO, which I wasn't at the American Cancer Society – I was on the executive team but not the CEO – it was the fact that my mom had the symptoms that caused me to go to the interview. I liked the people. Clearly I knew it was a big issue but I became more cognizant of just what a big issue it was and, of course, still is. So that's how I got here.

Chin: Both personally and professionally involved. Well, I appreciate you sharing that part of your story. I have a harder question for you. You've accomplished a lot as the CEO – and much more than what I listed in your introduction. Can you share a story of something you are most proud of in your work as the CEO?

Johns: Well, first of all anything I'm proud of, I'm proud of as a team. All the volunteers and staff and donors who – all the researchers. Everyone who makes it possible for us as a part of this cause to advance as we have. On that basis, I'm most proud of now actually getting to the point today for the first time having treatments for the underlying cause of the disease. Now certainly I’m very much equally proud of the increases in research investment because – and that's both from the association as the leader worldwide but also the federal government investments in research that you mentioned at the top because those things will continue to drive those ultimate outcomes, which are to provide people treatments they so, so badly need and not just in America but around the world.

Chin: Now Dr. Pike, firstly congratulations!

Pike: Thank you!

Chin: Now you're no stranger to the Alzheimer's Association, so beginning your career in 2016 there, but given your knowledge of this organization, your new roles as the CEO and president and CEO of the Alzheimer's Impact Movement, what will you focus on first starting in January 2023?

Pike: Thank you. First, I think it goes without saying that one of our most important moments is really what Harry was talking about. We’re at a new point in treating Alzheimer's. It's an exciting time and arguably one that will change the path of experience for those with Alzheimer's into the future at this moment. We're also at a crossroads because for the first time in history, we potentially have FDA approved treatments that are not covered by CMS. Today's main focus is to ensure that individuals that can benefit from treatments that are available now and into the future have access to those. While that's the focus today in December, it will continue to be the focus in January as well. One thing I would want to highlight about that is the experience of those who currently have mild cognitive impairment due to Alzheimer's disease or those who are in the early stages of Alzheimer's disease who could benefit. One of our national board members who was a part of our early-stage advisory group, when that CMS decision was made to not cover through the national coverage determination last year, she said it felt like the door was closing on her. That really stuck with me, for the very nature that that, as a patient advocacy organization, needs to be our work to ensure that the door does not close on those who could benefit from treatment.

Chin: I'll be asking you a couple questions later on too about alternative treatments or just treatments in addition to these monoclonal therapies. Before I get there though, I'm fascinated with your background. I'm wondering if you could share with us what lessons or experiences from the American Cancer Society and then the Preventative Health Partnership that you're going to bring with you in this new role that will help really, hopefully for you, shape your tenure as this next CEO.

Pike: Well certainly there are lessons in other chronic diseases that apply to this moment in time that I think I was able to learn through the American Cancer Study, through the Preventive Health Partnership, that certainly are going to carry forward in where we are. One of the biggest ones is, how do we use a community infrastructure to change the experience for those living with Alzheimer's or another form of dementia? The biggest piece of that is where they receive care, how they receive care, and how can we change the infrastructure to make sure they are receiving the highest quality care. Part of that is through their lived experience with their physician network or their health system. Cancer, heart disease, diabetes have been able to build what the guidelines of care need to look like and then build structures around incentivizing how that care is delivered. That's really part of this new phase. Not only will we have advances in treatment now and into the future but how do we build a community to be supportive of that, and that biggest community to deliver right now is the health system.

Chin: I'm struck by your answer and I'm very happy to hear that, Dr. Pike, simply because when I think about the new therapies that are coming out and what we think of as the “silver tsunami” of people getting older and having their cognitive change, I certainly think of structure and the fact that we need infrastructure in healthcare. We need to have people reach out to people in communities. We need to have those communities help people living with change and so I just feel like you're absolutely right. We need to have that in addition to all the other therapies that we hope to develop but it is really the community that's going to end up taking care of people who are living with change.

Pike: You are absolutely correct and building that community network is going to be a huge push for all of us in this space right now, not just us as an association, but how can we all come together to change that lived experience on behalf of our constituents?

Chin: So as a geriatrician running a memory clinic, I think of the Association as this incredibly important resource for patients, families, and frankly anyone thinking about their thinking. It represents to me an organization dedicated to care and support. So, Mr. Johns, what do you think are the most impactful services offered by the Association and which are the ones that are most utilized nationally?

Johns: Well, Dr. Chin, you've just, between you and Dr. Pike, touched on the core of this, which is that it's so important for us to be present in community, in communities across the country but then also even in the sense of the virtual presence that we've had. We've certainly had to learn how to do that through the pandemic. Our volunteers and our staff have really risen to that occasion to be able to continue to do those local programs that are so crucial. Then, of course, when you ask about the ones that are most utilized, our helpline. I know, given what you said – and I appreciate the way you approach that as the leader of a memory clinic and making the Association’s resources available – you know that number, I'm sure. 1-800-272-3900, for your viewers. The accessibility of that kind of information from master's level social workers trained in the challenges of the moments that caregivers, as well as individuals who are diagnosed, face every day across the country – our people who do that are saints, really. Anyone who ever has the chance to hear them even on one side of the conversation taking care of folks across the country knows immediately the impact that they have. I hear that in my travels across the country and have for years. Harry, I don't know what my family would have done without the Alzheimer's Association. Those things are so important, but the next thing I would mention in terms of that utilization, in terms of that impact, would be the very kind of thing that the two of you just discussed: the importance of health systems. Credit to Joanne that we have not just today begun to build that work with health systems in those systems, in close collaboration. That has now been going on for several years in anticipation of this moment which enters the new phase with treatments available and so many needs as a result of that because once research becomes treatment, research and treatment have become care. That is the phase we are now entering. Joanne really has done such a great job in her prior roles at bringing us in the Association into close collaboration, really already now affecting millions of users across the country.

Chin: Well, that's a perfect segue to my question for you, Dr. Pike. Where do you see the Association expanding or enhancing their care programs and what do you see the Association doing in the next five to 10 years?

Pike: Yeah, it's a great question. I think we probably hit on it a little bit but I want to start actually in a different place. When I started about six years ago, one of our main areas of focus was building an evidence base for our care programs that our communities rely on so much. You heard Harry talk about our helpline network, and certainly our support groups and education programs and community have been extremely important for families nationwide. We knew anecdotally that we were having an impact. We felt that in our heart and soul of who we are as an organization but we wanted to build the quantitative structure around knowing that. So we built a research support structure around our care programs to really understand what kind of impact we were having. We know that that knowledge base is critically important to where we want to go in the future as we continue to expand and look at new ways to serve our constituents. The piece that really is the future of a lot of the care that we need to provide is within the community and the health system. How do we build, as we talked about, those capable systems to provide care inclusive of our dementia care providers but also those health systems and our volunteers? The work that we will continue to do is reinforce our volunteer infrastructure, to give them the tools to provide additional services, while we are also looking at how do we change the standard of care that is being delivered through the dementia care provision but also through our health system as well.

Chin: I certainly see the Alzheimer's Association as a leader in being able to provide information. The website is incredibly helpful and I frequently will direct my patients’ families to that. I also think the work that the Association does on very specific topics within the care field is also incredibly helpful. The specific one I want to bring up is the driving – driving with dementia or driving with cognitive impairment. It's an excellent resource. It's not one that I think people immediately jump to when they think of the Alzheimer's Association but it is an important topic. Of course, I say that clinically but it's a topic that, of course, families face. Do you, Dr. Pike, see other additional topics as you are looking down the road of, even with therapies, what dementia means to people means to their families? Do you see other areas in which you'll likely be expanding these resources for people?

Pike: Yeah, absolutely. I think driving is one of those things that is representative of independence. It's not just about finding topics, in my opinion, that resonate with people about what they need but also the method in which we deliver that information as well. We'll be thinking about what is the best way to package the services that we need to provide and also the information that is relevant because as treatments become available in the community, as we're looking at this five, ten years down the road and what our constituents will need, this is going to be an ever-changing landscape of both information and mode of delivery. We have to learn from where we're at now, but that is an area of focus that we have and that has been growing. If there was any silver lining to the pandemic, certainly we learned new ways of interacting with each other and delivering information. I think it's a matter of taking those learnings and expanding on them.

Chin: I'd like to segue from care to research. We've already hinted at this and I don't think there's any better way to do it than to talk about lecanemab, the monoclonal antibody therapy that was shown to reduce amyloid in the brain and led to a 27 percent reduction in clinical decline. So I'm going to start with you, Mr Johns, what does this study mean to you as someone who has seen many clinical trials in Alzheimer's disease fail?

Johns: Well, it's so important, of course, to all of our constituents who have really themselves – so many of them work as volunteers and have been donors – have advanced this cause through our mission over the course of years and so many, of course, like the individual Dr. Pike mentioned on our board, who face the disease today. It's the first time, of course as you know and probably most of your viewers know, that we've had treatments. First, the Biogen treatment, aducanumab, that was approved by the FDA, not covered by CMS, and now lecanemab, which is going to be – it is before the FDA and is going to be a decision of theirs at the FDA by early January, the sixth. The potential to have treatment that has been so successful in trial is an advance that is not just for those who will be affected today. It's an advance that will make a difference in investment in the cause over time. It's very exciting to see this for the people who need it and certainly, as Joanne's already mentioned, the Association is working hard on what we believe should be seen as coverage subject to FDA approval, of course. If the FDA approves – the Biogen treatment was the first ever not to be covered by CMS when there is FDA approval in any disease, so it is so exciting but it's essential that there is coverage as well as this scientific advance, which we believe, I strongly believe, will lead to other scientific advances as well if everyone in the field can see that treatments will be covered for Alzheimer's as they have for cancer and heart disease and other diseases.

Chin: And so, Dr. Pike, the Association has consistently taken a pretty strong position on the importance of monoclonal antibody therapies and we've brought up aducanumab. There was a lot of debate about aducanumab and the Association came out saying that they supported it. So I'm wondering, do you see the Association continuing in this direction and then what other areas of treatment do you think the association will focus on in addition to these monoclonals?

Pike: Yeah, it's a great question. I think there's one thing to highlight about the question in our position. We will be relentless on behalf of our constituents for any type of treatment that has evidence, that is supported by science, and can be delivered safely. While this first class of treatments – the monoclonal antibodies – is before us today, we anticipate that there will be others and we will review it at the time that it is available for benefit, scientific support around it, but we will be relentless on behalf of our constituents regardless of the type of therapy if there is a benefit. Now with that in mind, I do think there are a few things that we can think about within that because the Alzheimer's Association is also focused on, how can we diversify the pipeline? What can we be looking at from the standpoint of new treatments that offer hope into the future? So we have a couple of things that we have been investing in through our research pipeline as well. One in particular was started about 10 years ago with one of our volunteers, Mikey Hoag, called Part the Cloud. This is a grant program that we have that really looks at a variety of targets in Alzheimer's disease – neuroinflammation, tau, cell metabolism, cell aging. Over time we have been able to fund 65 projects with $65 million. Those projects have gone on to receive over a billion dollars in follow-on funding. We are investing our own research dollars in how we can diversify the pipeline and look at other types of treatment targets. Now the other thing that when we think about the future – and certainly we'd have these monoclonals in front of us, monoclonal antibodies in front of us right now – we know Alzheimer's is a complex disease. We know that there is a future for multiple therapies at the same time. There's a power in the potential of a combination therapy where we're looking at not just a monoclonal antibody but potentially others being added in. So we're also thinking about how can we encourage and support the research of combination therapy into the future as well.

Johns: And in fact, just to add a little bit, Dr. Chin, to what Dr. Pike has said, the Association for years has had a portfolio of research that has been weighted to not amyloid. We're not specific in our approach. In fact we are agnostic, of course, about what ultimately works. We have long been working on the diversification that Joanne's talking about, with these excellent examples she's given, to be able to see the pipeline increase in multiple directions. Again, the federal funding is so important to that. If you really look back at what occurred in the field, so much was aimed at amyloid in no small part because the field was so underfunded. We now have altered that considerably both again as the leading funder from the Association but especially with what is at this point, as you've said, three and a half billion annually from the federal government and we're working right now to hopefully close out another increase as the congress ends its work for the year. We'll see if we succeed and I do believe the potential is there, so we'll see how that comes out as well.

Chin: I'm glad you both spoke to Part the Cloud. Just for our listeners, sometimes in a research project there isn't a known end and so you need to explore. That's the whole point of the scientific process, but it takes money to do that. These higher – I don't want to call them high risk but they're not as guaranteed as some of the more established clinical trials and you do need funding for that. To hear that the follow-on funding, which tells – for you, listener – that this was a very successful project that led to more grants and more funding, really shows the investment in this idea of exploring other mechanisms. I don't want to even say alternative pathways, but just other mechanisms of how our brain is actually functioning when it has disease. I think that's incredible and I think that's a real tribute to an advocacy group that really is investing in just the whole brain and not just one particular pathway. That leads me to a question of, will the Alzheimer's Association be looking at other diseases besides Alzheimer's disease? As we talk about multimodal therapy, there's other diseases that can impact the brain. Do we see a future in exploring other biomarkers or other ways of helping those conditions?

Johns: Well, I can give you just a little bit of background. Joanne, you can go forward. We have for years had collaborations with, for example, the Michael J. Fox Foundation to look at those kinds of approaches. We've done that as well with epilepsy because of the connections to other brain diseases or conditions that potentially do have direct connection or at least crucial indirect connection that we can identify. We have been working on a collaborative basis across the brain, if you will, for some time. Our own funding has gone into those kinds of additional directions as well as looking at additional targets as we talked a moment ago. But, Joanne, I'll let you speak to going forward.

Pike: Yeah, I think you said it quite well, Harry. There's things that we have done historically that we will continue to expand on. One of those is really looking at biomarkers, as you mentioned. It's an area of focus from an early detection and diagnosis standpoint that is critically important, especially as we think about going into the future and being able to change how care is delivered. The work that we do in biomarkers, plasma, and imaging certainly has an impact and an interest from all neurosciences, correct? The other piece that I might highlight is, what can we do with some of that Part the Cloud information that we have looked at from crossing that Valley of Death of taking some other medications or treatments and then using those within the Alzheimer's space? An example of that is we seat-funded the use of metformin within risk reduction prevention trials to really understand how we can use a target that's used in another disease for Alzheimer's research overall. I think that is an area of expansion that we will continue to see.

Chin: Dr. Pike, I also want to ask about advocacy because you will also be the CEO and president of the Alzheimer's Impact Movement. Where do you see the Alzheimer's Association or what do you see them addressing – the organization addressing in the ensuing years, especially now that we have potentially a therapy that could be used in clinic?

Pike: I think understanding a big piece of advocacy going forward is going to be understanding what needs to change about the infrastructure of our work. Our advocacy has always focused on kind of what I consider a total view, not just focusing on the research side but also focusing on our patient population and how we can support them in communities whether that's through state or federal infrastructure. That's not going to change and will only continue to be enhanced as we think about treatment going into communities long-term. A big piece is understanding how can some of that work that we're doing and investing in with research also shift to learn more about the state we are in right now. I might highlight an area that we know needs additional focus so that we can build the best infrastructure on behalf of our constituents. A key piece of that is health services research. This is an area of research that we have seen invested in with other chronic diseases to really understand diagnosis, treatment, and quality care after diagnosis within the cancer landscape, within the heart disease landscape, and you can go on and on with other chronic diseases. This is an area we're going to have to start understanding ourselves. What changes care delivery and how do we do that to the best possible way for our constituents as well? We've seen some of that and where it has worked through some of the Centers for Medicare and Medicaid innovation grants like with UCLA, UCSF, and Indiana University, where they've really looked at how do we provide quality care for those who are in the health system today, especially in a primary care or a geriatric setting and taking that type of knowledge and applying it and then pulling our advocacy levers to make sure that it's incentivized, that there's a payment model for it, is really some of the biggest focus that we have potentially in front of us.

Chin: So to end, Mr. Johns, as this transition in CEOs occurs in the Alzheimer's Association, can you share with Dr. Pike and our audience by listening in, one important lesson that you learned in your tenure that you wish someone had told you when you first started?

Johns: Well, Dr. Chin, I think I'll actually use one that someone did tell me, if I might.

Chin: Okay.

Johns: And I'll give credit to Dr. John Saffron, who was the CEO of the American Cancer Society where I was on the executive team for many years. He made the point to me, as I was being interviewed for this role, that I had to want the job. Now that might seem superficially true, but his real point ultimately was it's a job every day. It is not one you go home from. It's not one you have weekends from and that's all good. I could not have had a better opportunity in life than to have this job and that's certainly – I've told Joanne both of these things. I will just add that everything we've discussed about where the cause is going in this new phase makes it so appropriate in my belief, in our board's belief – because they ultimately have hired Joanne, of course – that Joanne is taking on this role given her background, her expertise, who she is as a human being. She cares about our constituents but she also knows these things that you have raised with her very specifically, that their needs are and that the needs exist in systems to be able to address these things. She'll do a great job of it. She's the right person for the job at this time and I look forward to all the things that she and the Association will accomplish going forward.

Chin: Given that neither of you get to go home from your job, I'd like to thank you both for your time. Mr. Johns, thank you for your service over the past 17 years as the CEO of the Alzheimer's Association, and then Dr. Pike, I really look forward to the work to come.

Pike: Thank you. Thank you for the invitation again.

Johns: Thank you.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you listen or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin--Madison. It receives funding from private, university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Amy Lambright Murphy and Caoilfhinn Rauwerdink and edited by Haoming Meng. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu, and follow us on Facebook and Twitter. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.