Reimagining Patient Advocacy

Transcription

Eric Gubera
That’s. All right. So I think we’ll just go ahead and get things kicked off here, so first of all, welcome everyone to our panel discussion on Patient advocacy and engagement, which is appropriately being led by two innovators who pioneered breakthroughs in this area. We have Alan Gilstrap, Senior Director of Advocacy and Engagement at Akouos and Anne Bruns the Director of Clinical Patient Advocacy at PTC Therapeutics Inc.

Eric Gubera
But before we jump into the discussion, I would kindly like everyone attending live to check in via chat and comments, that platform to the right, and simply let us know who you are and where you happen to be joining us from. We would love to hear from you and we’ll periodically check this area as well if you prefer to ask questions there. So we’ll kick off introductions with Alan, Senior Director, of course, of Clinical Advocacy and Engagement at Akouos. Alan blazed a new trail for patient advocacy in a rare lipid disorder.

Eric Gubera
Alan, can you tell us more about the story in your background?

Alan Gilstrap
Yeah, thank you, Eric. I was just grateful to be in the right place at the right time, and that place was at a time when the company that I was with was developing a new treatment for a very rare form of hypercholesterolemia. And there were no patient organizations at the time. And I really felt it was important for patients to have a voice not only in the drug development process, but also you know, in Washington as decisions about their health care are being made.

Alan Gilstrap
So I just set out just talking to a few patients and in our conversations, as we learned as an organization from them, you know, they they developed a relationship with each other and in in understanding what their needs were, it was really easy just to cast vision and to help them to understand how powerful they could be, if they formed an independent organization. So through that work, FH foundation was formed. Today, there are multiple treatments for FH, including the PCSK9s , and there’s new treatments specifically for homozygous FH.

Alan Gilstrap
And then that led me to another organization that, again, developing a treatment for a very rare lipid disorder, this time dealing with triglycerides. And again, no patient organization existed worldwide. Today through the work of that organization, there is not only a patient organization in the US, but there’s patient organizations throughout Europe and in other countries. So, again, I don’t bring anything to the table that is magic or that anybody else brings to the table. But I think what I have learned is that listening to patients, understanding their needs and then working as an organization to meet those needs where there are mutual goals and objectives really is is the magic.

Alan Gilstrap
And I would just encourage all of us, regardless of where we are in an organization, to think about that and to and to really think about listening and not making it about ourselves, not making it about ourselves being heard, but more about the patient and their experience being heard and elevated. So I’ll leave it at that. Thank you Eric.

Eric Gubera
Outstanding. Thanks, Alan. And Anne now it’s your turn. Can can you tell us how you became involved in patient advocacy and engagement and where it has brought you today?

Anne Bruns
Sure. Well, I guess if I follow Alan’s in the right place at the right time, mine would actually probably be the wrong place at the wrong time.

Anne Bruns
As in, I came in the advocacy eight years ago, my son was diagnosed with a rare disease. So never heard about rare disease. You know, the big players in the in the in the disease building. And so, you know, that was a huge Eye-Opening to not only our journey and this completely different world we started to live in, but to Patient advocacy itself. You know, I got started just a pretty outspoken and I just started talking to everybody that I could. Ended up joining the foundation that was for his disease, speaking everywhere. Ultimately took over the foundation, ran that for a couple of years and then moved over to industry.

Anne Bruns
And for me, as someone nonclinical, you know, my really, my goal was I literally watched my son live because of a medication. I mean, I can’t even tell you, he was in the hospital for a month and then night and day difference of what he looked like one night, got his drug the next morning. We actually thought we might take him home now, type of that thing. It was it was huge. And so for me, I wanted to be able to do what I could on my end to be able to bring treatments to families to give back what we had been given.

Anne Bruns
So, yeah, I work in Patient advocacy now. I used to work in our neurology program, focusing on a commercial product and now I focus on all of our pipelines. So I run advocacy with the clinical study teams on a variety of different programs of all of our assets that we’re working with.

Eric Gubera
Wow. Thanks Anne.

Eric Gubera
And two hour stories, but two great stories, really. What what I feel and based on being in the commercial space 20 years ago, in fact, dating myself a little bit here, and where we were then. Yeah. Versus where we are now, Alan and Anne. Quite frankly, you both are so humble, but I’m convinced that we would not be where we are now in rare disease development without your pioneering efforts. So thank you for that feedback on your origins, because you both got to a similar place in Patient advocacy from different starting points.

Eric Gubera
Alan we’ll move the discussion now to you. Can you, can you tell us about the obstacles you had to overcome at the time you began this journey for Patient advocacy to realize your vision?

Alan Gilstrap
Fortunately, I worked for people that understood the vision. I worked directly for those people. But sometimes what I found was that there are other people in the organization who impact your work who did not fully understand the concept or the mission. And so I think it’s important for them to get on board and there’s different ways to get them on board.

Alan Gilstrap
One way that I’ve used is I’ve invited Legal to come sit on an advisory board and hear directly from patients and to understand what their needs were, but also to understand that I was operating in a compliant manner.

Alan Gilstrap
So I think about bringing the patient voice into the organization and exposing people that may be the obstacles in the organization directly to the needs of patients and the journeys of patients, a lot of times is very helpful. You know, fortunately, I’ve not been in situations where I’ve had to fight too hard for budget. I know other people have. I know that’s sometimes a huge hurdle for an advocacy department. But again, I can imagine that the real root of that obstacle is that people within the organization, whether they be in finance or other areas of the organization that are making decisions about budgets, don’t fully appreciate the work that needs to be done and the importance of the work that needs to be done.

Alan Gilstrap
Just look at Anne as an example, look at where she came from as as a mother and look where she is today. She’s an, she’s an empowered advocate and today she’s making a difference for other people. And as an industry, if we can empower individuals and parents whose children are living with rare conditions and other conditions, if we can empower them and equip them, there aint, like, there’s no telling what can happen in this space where it can be 20 years from now, Eric.

Alan Gilstrap
So if we can help people within the organization understand the vision for advocacy and the vision for empowering individuals to advocate for themselves and to have a voice, I think a lot of those obstacles break down and crumble.

Eric Gubera
Outstanding. Great, great insight Alan and, and Anne I know in your in your journey to advocacy, you have to overcome you kind of there are a lot of that unmet needs that stood out to you at the time. And I’m just curious, how did you go about building the infrastructure for patients at the time?

Anne Bruns
Fortunately, I was able to come into a company that has a great advocacy program, they are we say we work for a cause, not a company. And so patients have always been first and foremost in their mind. But then it’s finding the little things. You know, we have a great team that identified that our Spanish speaking community was not getting their needs met. And so developed programs, you know, they worked really hard to develop programs for them.

Anne Bruns
Everything from, materials shouldn’t be just translated from one language to another. They have to be culturally translated. There’s a lot more than just a direct translation. And then holding conferences and educational programs specifically to meet their needs. So that was huge. And then just starting to identify where for me where we could kind of bring some synergy between Patient advocacy and clinical operations. So, you know, right now I sit on all of our study teams and I work really close with our clinical operations and our commercial development, corporate communications and kind of more of like a hub for all this advocacy to come through, rather than trying to direct it in so many different places.

Anne Bruns
And I think what we’ve seen over the years is that and I mean, you know, I’ve not been in the space as long as you have, but, you know, hearing stories and seeing what is been changed, just in my time. I think it used to be looking at Patient advocacy is more of like the corporate awareness initiatives, something that’s nice and kind and things to do. And now they’re truly embracing that this role is so extremely critical and that it’s embedded into every part of the company.

Anne Bruns
And exactly like what Alan said. I had a call with someone from Finance a year ago wanting to know what is all this money, what are these programs going for? And to the point that, you know, unfortunately, COVID hit before we we could do it, but they were ready. Finance was ready to start coming to all of our patient educational programs. They they wanted to do that. And so we bring patients in. We do it either virtually or when possible, not lately, bringing them into the company.

Anne Bruns
But to talk to the entire company as a whole, to share their story, their journey as an organization or what not. Because a lot of these people don’t ever meet the patients. And so making that human connection, I think is extremely important, especially for the clinical teams. Our scientists are amazing. They’re so smart and but they still may have never met an actual patient. So when you can put those two together in like a room or via a Zoom call, I mean, it makes a world of difference.

Anne Bruns
And I think, you know, as as a sponsor, we understand their needs. I think it helps organizations and families understand what the drug development process is like on our end. It’s not just like, it’s not chemistry back in high school, you throw some things together and poof, you’ve got something that qualifies as whatever. There’s a lot that goes into it, years and years. So I think just kind of bringing that together and finding where you can close those gaps is what I’m looking for as far as unmet needs and how to just kind of centralize a lot of this information for our teams and our families.

Eric Gubera
Wow. Thank you Anne. And you touched on the topic within your discussion there that I think is a really hot button issue now that’s seeing the light of day that hasn’t in the past, and that’s disparities in health care and access for communities that are either economically challenged or in social situations where their voices are not integrated into this movement. So you touched on a key point there. Any further insight? Because I know executives right now, they really want to develop a strategy to sort of, to help with the outreach.

Eric Gubera
And you mentioned something I think very important, integrating the patients, literally integrating the patients with the innovators, the scientists, into the story. Is there anything and this goes to Alan as well, that that you some best practices in terms of addressing these disparities in health care too?

Anne Bruns
I’ll just mention one thing that I keep kind of looking at is, I think COVID has shown us the disparity of resources that seem so easy as the Internet and this call that we’re on today. And telehealth is a wonderful idea and it’s so important. But not everyone has access to the Internet. They don’t have the means for it, whatever it may be. So when we think about, oh, let’s make trials decentralized or what can we do via telehealth, we also have to make sure that we’re providing that to some degree or finding a way to make sure these families actually have the opportunity to use telehealth, because it’s not as easy for a lot of people.

Anne Bruns
It is for maybe you and I to jump on a Zoom call and talk to a physician or something. So while it sounds like a great idea, we need to make sure we’re building up all of the underlying factors so that it can happen.

Alan Gilstrap
I’ll just add to what Anne just said. You know, as an organization that is developing potential potentially developing gene therapies for hearing loss, we talked a lot about the current devices that are used, particularly for children that are born with genetic hearing loss and just in communities that are underprivileged. Just the challenge that even those devices, even if they have access to the device, even the challenge of just maintaining that device over the lifetime of a child. So we talk a lot about that.

Alan Gilstrap
And I think one place that I’ve I know, you know, one place and I’m relying on right now is the patient organizations. Because they are now talking about fortunately, they are talking about the same disparities that exist within their own communities and they’re sensitive to those needs. And so just connecting to the patient organization and connecting to that same sensitivity that exists within the patient organization and supporting initiatives within that patient organization to reach out and to support and to communicate with communities that are just discouraged, I think is is key for all of us, at least at a starting point, until we can better understand how we can serve the needs of the communities that are there less privileged.

Eric Gubera
Excellent. Great insights, and it’s encouraging to know that that seems, there seems to be an opportunity there for organizations to be proactive, perhaps into not sort of wait to hear about what the challenges are, but maybe perhaps to actually develop a strategy to do exactly what Alan and Anne just described. So thank you for that. We’ll move on. I’m going to ask a question which I think is on the minds of everyone that will will be watching this call is, ‘how can a well developed patient advocacy an engagement program help biopharma?’

Eric Gubera
Alan, do you want to kick this one off?

Alan Gilstrap
Well, I’m going to just use Anne as an example. Great story. But it’s about empowering individuals who are impacted by a rare disease or a condition to have a voice. And so from a pharma or biopharma perspective, listen, we can’t do it alone. The FDA also wants to hear from patients. The FDA, as diseases get more and more specific, and as treatments get more and more specific to rare diseases. Listen, the FDA, and that’s in my experience, the FDA does not fully understand many of these rare diseases.

Alan Gilstrap
And it really takes that patient voice to inform the approval process at the FDA. Just like it does on the clinical development pathway. But the patient voice doesn’t just stop being valuable there. I’ve been involved with some patient organizations, some rare disease patient organizations who say, you know, I thought for sure that our work was done once a rare disease treatment got approved. But they found that there weren’t. The work was really just beginning, because then they had to overcome the access and the reimbursement hurdle.

Alan Gilstrap
So the patient voice can be and is extremely valuable and necessary from the very early stage development all the way through a rare disease patient or individual living with a condition, to get access and get reimbursement for treatment. So I think pharma companies are beginning to understand how important that patient voice is and how important this role is in the organization like Anne’s talked about. Working cross functionally with all aspects of the organization to make sure that the patient voice is heard and understood and that it informs and changes our work as we move forward so that the work on the back end has more value and has more relevance before decision makers.

Eric Gubera
Outstanding. Anne, any insight on this subject?

Anne Bruns
Yeah, I mean, I like what Alan said just to kind of go off of that, like empowering these families and that these caregivers and their patients. That I mean, if you think about the first time you go, you go to a doctor, right? They maybe got the white coat, there’s degrees on the wall, they’re very, can be very intimidating. And so as a parent, when you are thrown into a world that you don’t know anything about and they’re throwing terminology, vocabulary, all sorts of things, it’s really hard to kind of figure out what’s going on and and really to have that conversation.

Anne Bruns
So I think the sponsors, we can look at helping advocacy groups with education and awareness programs, to get these families up to speed so that they they know the terminology. They understand what the, everything from what a lab test is to, you know, what treatments are out there. Is there even a clinical trial? Sometimes doctors don’t know that there’s a clinical trial option. So if we can inform the families so that they can be armed with this wealth of information, then they also can have a really good conversation with their care team.

Anne Bruns
It kind of puts them on the same playing field. They’re working together as a team, not just taking that understanding. In turn that goes and that empowers them out in their community. We know that social media is huge. These groups rely on connecting via Facebook or whatever. So when you get a group of parents that’s amazing and powerful, they just start bringing more into the fold. And the numbers multiply and multiply until you have this organization that I mean, a lot of a lot of them start to become more knowledgeable than some of the doctors themselves in certain areas.

Anne Bruns
And not to discredit any of the physicians experience or education, but when they have a full practice and maybe a handful of rare patients, it’s not their priority. And so helping bring that back and giving them the information not only helps them in their care plan, but also helps them as a community be able to, you know, some would never dream of going to the FDA, but letting them know that these are the possibilities that they can do. So I’m going to think, just empowering them to be the best advocates that they can ultimately. And they know they want to they just don’t necessarily know how. So it’s really just giving them the tools and resources and then connecting them with others.

Alan Gilstrap
Yes. Can I just add one thing that Anne kind of mentioned. And you and I both come from a similar cardiovascular and metabolic background, and it just reminded me of a conversation that a patient leader and I had at an ACC Conference sitting in San Francisco with a physician having coffee. The physician said to this patient leader, listen. Physicians don’t think about FH, if we see LDL level above 190, we just think the LDL level above 190, they do not think that it could be genetic.

Alan Gilstrap
And what he said. The physician said to the two of us is that you need to bring genetic hypercholesterolemia into our everyday thinking. Yeah. Today, this is probably 10 years later now, maybe. If physicians if a if a lipid specialist or even a, I would say internal medicine physician sees an LDL above 130, 190, I would dare say that they began to start thinking about genetic lipid disorders and asking additional questions of that patient.

Alan Gilstrap
So, a patient organization really has made that shift along with the support of industry. But it really was the patient voice that has created that shift and created better care today for patients living with genetic disorders.

Eric Gubera
Alan, you just added a follow up question that I definitely want Anne’s perspective on this, as well is, how has this advocacy work perhaps brought patients who otherwise would have been in the shadows, suffering in silence to the forefront? And maybe some of these diseases, yes, they are indeed rare, but perhaps not as rare as we once thought. And and perhaps for unexplained diseases that are a little bit more common, that are now coming out of the woodwork. What is your experience in that area?

Alan Gilstrap
Anne I’m going to let you go first.

Anne Bruns
OK, well, I mean, the first example that pops into my head is ALS. What did you know about it before the Ice Bucket Challenge? I didn’t know a whole lot about it. Right. So you take a group that comes up with an idea that does something that can launch an amazing campaign and suddenly everyone’s talking about it. They all understand that you hear it. You’re like, oh, I know about that.

Anne Bruns
Maybe not a lot, but, you know, it’s out there. And so I think, you know, working with these groups, helping them just maybe to identify and then just teaching them to kind of get the word out. I will tell you that I am annoying as heck when I take my kids to the doctor or like an urgent someone that’s not their traditional doctor. Right. Because I always throw that, oh, well, you know, I have to be careful because my son’s immunocompromised, why and then I go into the 90 second spill on this disease and how it presents it. Because my goal is if I can teach one person in 90 seconds. You know.

Anne Bruns
But that’s what these advocates do. They have, they’re learning to be able to give this elevator pitch about their disease and get it out there. And I think the more opportunities. But I also think we have to be careful that there’s a lot of parents, patients, caregivers, whatever demographic, that there’s a there’s a fight or flight in all of us. Right. And when they get this diagnosis, some of them don’t want to go out.

Anne Bruns
They don’t want to be in front of people. They are trying to manage a huge life change. And we have to be supportive of them as well. But then we have to recognize the ones that are willing to be very outspoken and help build them up, because what we’re doing is we’re still helping those that are kind of still hunkered down trying to figure out what is happening in their world. So I don’t know. I just think there’s so many opportunities to help these and the advocacy groups and support where we can.

Anne Bruns
They’ve got all the good ideas.

Eric Gubera
Outstanding.

Eric Gubera
And this kind of leads me. Now I’m going to provide a little context before asking this next question. But there used to be a perception, that rare disease investments from biopharma or big pharma, for that matter, were really just out of the kindness of their own hearts. There was, there’s this perception that used to be that there there wasn’t much of anything to explore in terms of return on investment, if you will, because we all know that bringing a molecule, you know, from concept to, you know, being delivered to patients is extraordinarily expensive.

Eric Gubera
So I guess, you know, Anne this this question I’ll put to you first. What measures, if any, exists for determining our why or how to invest appropriately in these initiatives?

Anne Bruns
Sure. So I think I mean, right now I’m in the process of trying to create some type of metric system to start measuring these. What is the impact? What are we doing? What does this have? But I keep going back to what is our favorite term in clinical operations. Right. Endpoints. What’s the endpoint? Did we meet our endpoint? But I like to look at it like I have my own set of endpoints. So from bench to bedside is like the theme.

Anne Bruns
It’s a well-known phrase for like every other talk out there. So what is our engagement endpoint? So if our final corporate endpoint is to have product in hand of our patients, we have to look at every phase of the drug development process and see where advocacy will play a detailed part. So that’s engagement advocacy groups, it’s figuring out what our message is and the timing of it. Is there a social media strategy? And finally down to the commercialization of the drug.

Anne Bruns
But like you mentioned, once it’s, once it got there, that’s when the work begins too. There’s so much more to keep doing with that. So really using the patient’s voice as our guide, we have to set our own endpoints either through advocacy, the study itself. And so for me, like right now, that’s what I’m trying to come up with, is finding out, figuring out this like metric system so I can kind of track it. You know. I have my things I do for certain phases of each study in advocacy.

Anne Bruns
How is that measuring and where does it take us to the next step? So for me, clinical trials love to talk about endpoints, but for me it’s just developing my own set of endpoints to work with.

Eric Gubera
Outstanding. Alan.

Alan Gilstrap
Yeah, I would say Genzyme really proved that there could be a business model around rare disease, particularly around Fabray and Doescher. And I think we we think about that today in terms of the numbers of patients that exist and the disease progression. Can we measure it? Is there adequate measures out there that would allow us to not only have some clinical results, but some quality of life results as well?

Alan Gilstrap
But I, I like what Anne said. It’s like, are we listening to the patient voice or are we understanding the needs of the patients that we hope to serve. And at the same time, are we supporting them and encouraging them to gather relevant information that then could support an organization, like any industry partner, to develop a treatment off of the information that they’ve been collecting. So there’s a lot of contact databases out there, but how are we supporting and encouraging patient, rare disease patient groups to turn that information into a real registry?

Alan Gilstrap
And so I think that is one of the newest movements with rare acts and others.

Alan Gilstrap
I think it’s pretty exciting, again, putting the power of control in the hands of patients and allowing them to drive and allowing them to push the ball forward, with us as their partners.

Eric Gubera
Outstanding. So, now, looking back at where we were then and where we are now. What are the opportunities and challenges ahead that we need to pay forward or address if it’s a challenge, in order to continue our progress in rare disease and patient advocacy?

Anne Bruns
I mean, we talk a lot about making sure that the patient has a seat at the table, but I think we need to make sure that Patient advocacy has a seat at the table on the corporate level, you know, embedded in every department.

Anne Bruns
There should be a direct line to every department, to Patient advocacy. I mean, patient case endurance, like we need to look at that type of thing. So I think that ensuring, that realizing how important the role of Patient advocacy is and like, you know, just having that conversation of what can we do, how can we build this better. You know, it all starts with that conversation, but it’s getting there, which is most important. And I think a lot of companies are there and they can always say, yes, there’s always room for improvement in any situation.

Anne Bruns
But I think a lot of companies are getting there and they’re realizing just how great of an asset it is to have.

Alan Gilstrap
I would add a couple of things to to to what Anne said. You know, when I’m working with a parent right now that has a child with a genetic hearing loss, I’m always thinking and talking about this gene therapy, if it becomes available, understand that it may not be the right time for their child. But the work that they are doing, the input that they’re having today could potentially help the next generation of children that are being born with hearing loss.

Alan Gilstrap
Casting that vision of this may not help me today, but what I do today could help the next generation. And so I try to operate in that same manner with myself. So I think it’s important that we encourage our organizations to not only have internships at the business level, marketing level, but also create internships for interested students at the advocacy level. The other thing that we can do as an industry that I feel very important is, you know, particularly during COVID, we’ve added, if you’re new to an advocacy role within an organization or your organization is geared to a disease base, personally, I have found that it’s challenging to reach out to a patient organization that, I don’t know via a connect with us page, because they do not respond.

Alan Gilstrap
They’ve got so much going on like Anne talked about. They’ve got so much going on, I’m sure they’re not watching you know that box, or my email is going to their spam folder. But what we can do as industry partners is bring each other to the table where we can together support these advocacy organizations, because I firmly believe there is no competition in advocacy. If there’s an advocacy organization that I’m working with and I know that one of my peers or even competitors is not at that table supporting that group and I have a contact with with that industry partner, I’m going to bring them to the table.

Alan Gilstrap
Because they need to be there supporting the patient community and really learning from the patient community. So that’s just my soapbox box step off.

Eric Gubera
Wow, that was a great soapbox that, I tell you what, that put some teeth behind the mantra together we’re better.

Eric Gubera
And based on what I heard from both of you, that it couldn’t be more true as it relates to Patient advocacy. So I we’re kind of at the at the point in the discussion that I was going to give the audience an opportunity, if anyone has any questions, they want to put in the chat for our distinguished panel to entertain. I encourage you to do so. We’ve got folks from North Carolina, Boston Mass, in the audience. I think there’s some Hoosiers from Indiana that might be out there.

Eric Gubera
I encourage you all. To our live attendees, thank you for for starters, if you have any questions you would like to put forward to the panel in the interim, I’ll just give the panel a chance to to share with us what their vision is of the future. Even in your practice as as patient advocates.

Anne Bruns
I’ll let you go first, Alan.

Eric Gubera
I was going to say while I catch my breath after that last exertion. Now, now I have to tell you just before I answer your question, Eric, oftentimes I’m if I’m on a call with Nicole Boyce from formerly Global Jeans, but now Wearex, oftentimes I feel like I just came out of a church service with this preacher who was just like, she gets so empowered and so fired up, which I love, and I am guilty of the same thing.

Alan Gilstrap
So I apologize. Where we’re going. Wow. I think. I think this role is gaining traction. I think this role is helping organizations to understand just how valuable and important the patient voice is and the understanding that we can’t, industry can’t do this alone. We have to do this in partnership with patients, with physicians, societies and others. And I think as diseases get, rare diseases get more attention and we find better pathways to get to those diseases, it’s just going to elevate the importance of the patient voice.

Alan Gilstrap
And so what we do today, all of us, in just strengthening this role, bringing additional value to this role every day in our own organizations is really just going to help empower this role as we move forward into the future.

Anne Bruns
Absolutely. I think for me, it’s just you know, you mentioned no competition. I think as patient advocates, we have to support each other. You know, there’s not a degree in Patient advocacy at any university. You know, it’s not something you, like go to school for. So you either come into advocacy, having worked in industry and kind of came into this, into this role. Or you come with, as me, and other amazing advocates that are patients themselves or caregivers or something.

Anne Bruns
But we’re all in it together. And I mean, I look at rare disease and you think my little disease I might be working on is just one piece of a bigger puzzle. So what can I do? What can Alan and I talk about, best practices, and share with our other friends in patient advocacy to help build each other up? Like I said, we’re all kind of learning as we’re building this. You know, and in one way, we’re kind of building the plane is we’re flying, as they say, because we’re learning on how to interact with these groups so we can learn from each other and help each other.

Anne Bruns
And if we can see I mean, if I can see Alan’s product, you know, get approved and succeed and work with that advocacy group, that I can take part of that and build and help one of my groups succeed. And maybe it helps the study succeed. So I think as advocates, we need to be consistently working together, sharing. Bethany, that’s on here. You know, I met her through a group just like this of chatting and sharing best practice about advocacy.

Anne Bruns
So in that respect, helping the organizations that are kind of helping each other so that I mean, I think we all want to be a force to be reckoned with and advocacy is on its way and that’s how we get there is supporting one another.

Alan Gilstrap
That’s right. And COVID has added additional challenges to our role. And to the patients, you know. And how do we work together to really, it it’s even more important like Anne said now too, for us to work together to help one another. So. Yeah. Anne thank you.

Anne Bruns
Yeah, absolutely. I’ll be calling you for help.

Alan Gilstrap
Yeah. We’ll put Bethany on the call too. Yeah. And Eric, Eric’s been there too. Yeah.

Eric Gubera
Yeah, just being a fly on the wall. I can tell you from this discussion like has been an amazing educational experience for me and I just really appreciate this insight, because it really opened my eyes to the potential that we that we have to keep this improvement going. And my discussions with Alan before today’s panel discussion, I just told him I was amazed, quite frankly, at where we were in the early 2000s, just even in getting rare disease approvals to begin with. And now this fast track status for rare disease.

Eric Gubera
It seems like like we’ve almost become a little immune or spoilt to it. I might say, in how how rapidly they’re coming out. And of course, some of the breakthroughs and rare immuno-oncology diseases is is definitely feeding into that. But I humbly submit one of the most interesting things about this is that usually the science, the breakthrough in science, is a stimulus to addressing unmet needs, usually broader unmet needs. What’s interesting about this movement, in my humble opinion, 20 years of observation later, is I think that Patient advocacy fueled the scientific growth and investment in this.

Eric Gubera
So I am humbled and by what you all have done and the other patient advocates out there who’ve been doing this before, it’s become the cool thing to do, thankfully. Right. There’s ice bucket challenges, what not. And I just really appreciate that.

Eric Gubera
And so we’ve got some great comments from from Bethany, who says Bethany says, as you said, Patient advocacy is becoming a more popular and necessary department role. What tools can you share that have been most helpful for you to provide your own staff with an understanding of the value of Patient advocacy, so it makes sense and is necessary to what they do?

Anne Bruns
Bring a patient in.

Alan Gilstrap
Yeah, yeah, and I’m thinking back to, so next Wednesday is World Hearing Day, and last year we celebrated World Hearing Day in person and we brought in five patients in. And I still remember one of those individuals was living with Usher syndrome. So from a genetic cause, this person is both deaf and blind. And this person came in with her companion dog. And my colleagues, scientist were so, you know, loving to walk her through the laboratories and help her feel and explain everything that she was feeling and smelling and sensing. And those individuals, those scientists still talk about that experience today.

Alan Gilstrap
For me, I haven’t forgot it either. Just standing back and watching the scientists lead her so carefully through the laboratories while they explained everything to her.

Alan Gilstrap
So I think giving our colleagues like insight, exposure to patients, exposure to their story, and another very effective tool that I’ve used is that I’m calling them male parent working groups or patient working groups. Some, I’ve have called them advisory boards in the past, where we bring patients and we bring families in to listen to them, to learn from them, so that what we learn and what we hear informs our work. But it’s a great opportunity in that setting to expose different leaders within the organization to those patient voices because they, you know what and I’ve also encouraged societies to join me in those events.

Alan Gilstrap
So it not only turns the head of the leaders within the organization, but it also has the ability to turn the head of an entire society to help them focus on that rare disease. In L.A. is one example of that. So, I think there’s lots that we can do and let’s think beyond our walls, how we can help these patients. It could be with societies or important physicians or others that may or should be at the table learning from the patient experience.

Eric Gubera
Outstanding. Anne any final words or comments?

Anne Bruns
I think I would just add to kind of follow up with one is that, you know, I don’t know how to do this, but I want to figure out how to get outside of our industry advocacy box and bring the the community into us. Prior to coming to industry. We would put on symposium’s for a rare disease and the people that would come were the people are already involved. How do we get our neighborhood businesses to learn about this and to be able to support it, to educate them unless they’re directly affected by it, they’re not going to have any idea of what’s out there.

Anne Bruns
And there could be some incredible opportunities to connect with these people. Maybe it’s just helping the advocacy groups connect with them, but jumping outside of our box as far as just industry industry and health care. I don’t know how to do it.

Eric Gubera
Pedro Nunez has a great catch. It goes, ‘we go to the communities where they live’. I, you know, I love it. Well, I like to, we’ve come up on our time allotment. I just would like on behalf of ARSENAL ADVISORS and the life science practice in particular, I would just like to thank Alan and Anne for this dynamic engagement.

Eric Gubera
And for our attendees, our live attendees, we really appreciate you. And there’s some some kind of nice action items that are available, that emerged from this discussion. And I encourage those who are listening to to listen and take notes and maybe we can come up with some future plans to address some of these opportunities we have in front of us in Patient advocacy.

Eric Gubera
So thank you all and have a great afternoon.

Alan Gilstrap
Thank you Anne, great seeing you again.

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