Engaging Rare Disease Communities Through Authenticity

Stewart Gandolf
Welcome to the Healthcare Success Podcast, and today I have two more distinguished guests that I know from working with in the past, and I’m really excited to meet them. We’re going to be talking about rare disease today, and this is a topic that, is its own sort of special niche, and I think you guys are going to have some great comments. I’m really looking forward to it. So today, to introduce my esteemed, guests today, we have Sugata Biswaz, who’s Managing Partner and Co-Founder of Cadence Communications and Research, and Emily Anderson works for the same firm. She’s Associate Director of Patient-Centered Research. Welcome, both of you guys!

Sugata Biswas & Emily Anderson
Thank you, Stewart.

Stewart Gandolf
I want to work with you guys again! No, it’s great to have you, so thank you for joining me. Glad to have you guys. So, first of all, we’re very informal here, so feel free to talk, tell me a little bit about your company, what you guys do, what’s the sort of point behind it. That’ll help ground us for all the other questions that are coming, because you have a very specialized company, I’d love to hear a little bit more about that.

Sugata Biswas
Sure, sure. Hey, Emily, maybe I’ll start things off, and then. Great, great. Hey, so, first of all, thanks for having us on this, Stewart, really appreciate it. So, well, my name for everybody out there is Sugata Biswas. As Stewart mentioned, I am one of the founders of Cadence Communications and Research. We are a healthcare-focused professional services company based here in Southern California. We do a lot of work across healthcare, so not just focused on rare disease, but also other, you know, mainstream diseases—neurology, oncology, a lot of things—and we provide services in two basic areas: market research, what we call clinical and market insights, and then also medical communications. So, we are the people that would help organize advisory boards, meetings between manufacturers and doctors, or patients and doctors. We really see ourselves as helping people make better decisions in the healthcare space, be they patients, caregivers, physicians, manufacturers. Emily?

Emily Anderson
Great. So, my role with Cadence really has been mostly working on the market research side, a lot of recruiting, a lot of finding and making connections within that space, whether it’s caregivers or physicians, patients, and all of that sorts. I’ve been with the company for about 10 years, and my favorite part of the work that I do is really connecting with patients and caregivers.

Stewart Gandolf

That’s great, and we certainly enjoy having you both, and I had the pleasure of working with both Sagata and Emily on a rare disease project, which is what inspired this particular, the success that you guys have with that project inspired the idea for today’s podcast. So, I’m really intrigued by this topic, and I’d like to start because this is a call we get from time to time, and rare disease, as I said earlier, seems to be its own specific niche. It’s its own world. And so, why are the rare disease communities and people, so different and so difficult to reach?

Sugata Biswas
Sure, sure. Maybe, yeah, just to jump in really quick at first, you know, it might help, sir, if we just take a step back and just think about what’s considered a rare disease here in the United States. So, the Orphan Drug Act in 1983 defined a rare disease as a disease or a condition that affects less than 200,000 people in the U.S. There’s actually a subcategory within rare disease called ultra-rare disease, and that is something where the condition affects 1 in 50,000 people. So, roughly, that translates to about 7,000 people total in the U.S. So, these communities are small. If you take all the rare diseases, there’s about 7,000 of them, a little bit more than 7,000, rare diseases. Collectively, it affects about 30 million people. Part of the reason why the Orphan Drug Act came to be in 1983 was to incentivize manufacturers to serve, to develop products for these conditions, and it does so in a number of different ways. And, getting back to your question, why are they unique? Why are they hard to reach? It’s really based, first and foremost, fundamentally on that. Like, it is very rare. This isn’t a disease that’s out there in the media a lot. It’s not that there are huge organizations going after cures. It’s very small, and so because of that, the patients, sometimes they feel very isolated, the caregivers feel isolated, and they really look to each other for information, for support, and they really look to the physicians to help them cope with these diseases. Emily, would you like to add to that?

Emily Anderson
Yeah, no, I think that you got it there. These are really ultra-rare conditions that these people are living with. They’re real people, and a lot of these people are just looking for answers, and they find a lot of their information just with talking with other people who are experiencing something similar than what they’ve been through. And I think what makes finding caregivers and patients within this group so difficult and so different than just working with a traditional recruiting partner is that our approach really is human-centered. We are building trust with these people, we’re leading with empathy, and we’re really trying to get to know these people authentically and not just trying to survey their groups and come into their existing communities and take away from it. We’re really trying to add to it.

Stewart Gandolf
So that word, human-centered, is something that, we talked about in the past. What does that mean, especially to you guys, but, like, what does human-centered actually mean? Help me understand.

Sugata Biswas
Really good, and honestly, I feel like Emily coined the term for us, at least within the organization, and is champion of it. But just really quick, a couple of my perspective, and then I’ll hand it over to you, Emily, is for me, it’s that we don’t treat, members, caregivers, patients, of the rare disease communities as numbers. I think for too long, they have been treated as a number, so looking at how many people are affected, you know, what’s the actual symptom? How many people suffer fatalities from it, it’s more than that to us. These are people’s lives, and they are fundamentally affected by the condition. Emily?

Emily Anderson
Yeah, I mean, it’s really just about meeting people where they are and treating them like humans. You know, a lot of these people have been shoveled through the healthcare system with, multiple different doctors and specialties and appointments, and it gets exhausting, and at the end of the day, these are real people with real families, and it’s affecting their everyday lives.

Stewart Gandolf
Part of what inspired this interview, Emily, was your success in, in social media, but before we talk about that, you mentioned something about not being an intruder, or I don’t know if those are the exact words you used, but, you know, how do you do that? That’s a gift, because you know, I’m pretty sure you’re going to want to lead with empathy, and I’m guessing these people feel frustrated, and probably a little suspicious, and exhausted, and lots of emotions, and some of these diseases can be very detrimental. So, is it all about empathy? Like, what’s your sort of… because you’re so good at this.

Emily Anderson
Yeah, I mean, for me, it’s just being authentic with people, and just telling them exactly who I am, and why I’m interested in it, and, you know, I’ve gone through my own medical hell myself, and I’ve gone through a number of surgeries, and I’ve been impacted by rare disease, personally, and I’ve had a lot of people in my life that I’ve lost, unfortunately, due to cancer and other things, and I just show up to these people and just tell them who I am and why I care, and I’m not just some random person who wants to hand them a survey and give them $20. I actually do come from a genuine place. I’ve walked a few steps in these people’s shoes, even if it’s not the exact same rare disease. I’ve gone through this journey personally, and it does matter to me, and I think people can sniff out inauthenticity. And if I tell them, this is where I’m coming from, this is why I care, and I think that it would be great to learn from your group, and not just take from your group, but actually share my experiences and just be real with these people, and that’s really the key to it, and I don’t think, anyone can walk in and do that same thing. Not everybody has my experience, and not everyone is willing to share, but yeah, I think that that’s really been what has made my work successful, is just being real with people, and sharing my experience.

Stewart Gandolf
So I can understand how that would work, because pharma is so big. I mean, it is just so big, and there’s so much money, and there’s so many people involved, and I could see how it’d be pretty easy to lose that human touch, right? It’s like, they feel like we’re not getting our hands really dirty, we’re not actually dealing with these people, we’re just talking about them in boardrooms. You’re actually speaking with them, you’re interacting with them, you’re sharing their stories and their trouble, which is a very, very different, perspective.

Emily Anderson

And I’ve been on the other side. I’ve been the person who’s looked for support groups through Facebook or Instagram, or just finding communities online, and I’ve, you know, I’ve been in their shoes.

Stewart Gandolf
Let’s talk about that, actually. So, social media—you know, it’s funny, I remember there was a book called Here Comes Everybody, and this was when the social media first became a thing. This is now probably 20 years old or something, but it was talking about the impact of it, and how people with, you know, what diverse interests could get together, you know, for good and ill, but this is a case where, I think it’s incredible, and what an enabler, because if you’re, by definition, 1 out of 50,000 people, it’s really hard to find people to talk to. But with social media, suddenly that goes away. So, let’s talk a little bit about social media. What’s happening today with social media How are people, with rare diseases using it? What’s the latest?

Sugata Biswas
Yeah, yeah, you know, I think you make a really good point about the potential impact of social media, and as a great tool for potentially creating communities and for disseminating information. The challenge I think a lot of rare disease communities have, you know, is twofold. One is simply, now the size of the internet. There’s so much out there, and there’s so much noise that it’s difficult to find the right, you know, the right group. So, a lot of them are searching for information, and you’ve got manufacturers, pharmaceutical companies that are putting information out there, you’ve got, influencers who are putting information out there, you’ve got foundations. You know, trying to disseminate, get through all of that, but also disseminate, well, what’s genuine, what’s not, what’s pseudoscience versus what’s based on science. There’s just a lot out there, and then you have groups like ours who are trying to talk to them, so there’s just a lot of noise, a lot of chaos out there, but what’s nice is that, when you leverage properly, it can create those online communities. Social media is the place where many—certainly a segment of the patients and caregivers in these rare diseases—already live. And it’s not just casually living there, but it’s a real important part of their lives, because it, once again, once it’s used right, it can be very connecting. One caregiver in California can connect to one in New York in a very real way and share stories, get support, and feel like they’re not alone. So, and Emily can speak to how we’re, utilizing this channel, but really what our approach was to look at this avenue as one of the avenues for reaching out to them.

Stewart Gandolf
That’s great, and yeah, I’d love to hear it, but I’m assuming Facebook is probably the main one for you, and there’s others as well, but maybe expand a little bit more about what it’s like out there, because—and by the way, I’m also curious, Emily, your comment on—to dovetail on what Sugata says, in this world of misinformation. And also, there are people out there looking to exploit people who are desperate. So, it’s a really hectic scene out there. So, give us a sense of some of these Facebook communities or other communities, and, how the cultures of those vary, I’m curious.

Emily Anderson
Yeah, I mean, they’re all very different, and it depends on what kind of specific rare disease that you’re looking at. Like Sugata said, these are very isolated, small communities. It’s rare, so when you’re in these groups, these people are sharing their experiences, and they’re on there every single day. They’re sharing what’s happening in their daily lives, they’re looking for support, they’re sharing information, and they’re tight-knit groups, and they don’t have a lot of people in them. These are very, you know, it’s rare.

Stewart Gandolf
Okay, that makes sense. Pharma has so many different resources, so many different people involved, and it’s easy to really, I’m assuming, make some mistakes here when you’re trying to re-engage with these communities. So, what are the mistakes that are pretty common, and what should people try really hard to avoid?

Sugata Biswas
I think, you know, because of the nature of social media, and because of the potential for fraud, as you mentioned earlier. These communities—once they form links, they’re very protective of them. You know, they’re protective of the community, they want to keep the integrity and the honesty, very much intact, so they’re not super open. They’re cautious. And I think a mistake that I think sometimes pharma or anybody, even groups like ours, is to just come in there and start, you know, just asking them questions or not really wanting to get to understand the group before we try to engage the group.

Stewart Gandolf
Okay, that makes sense. Give me a sense of things that you come up that may have been unexpected, something you wouldn’t have found without listening first. That kind of leads straight into that question.

Sugata Biswas
Sure, I think I’ll start with one. You know, it’s interesting, when you engage authentically, and if you can come in with a clean slate, not with a set of assumptions, the potential for discovering new things is tremendous. I remember doing one study where we were looking at, part of what we were looking at was to look at how the drug was delivered to the patient. One was an existing formulation of just doing a subcutaneous injection, another one was through an IV. And so, with an IV, of course, you’d have to come into the center, go through the IV process. And everybody pretty much assumed, like, well, IV, obviously, as a mode of administration, will be less preferred than a subcutaneous injection, which a competitor had. And what was interesting is, as we got to know them, as we really got to understand the story, one thing that came out was that these IV centers, these administration centers, were actually forms of community. They would see patients consistently, other patients, which they then began to form bonds. They would speak to the healthcare providers there. Again, forming bonds creating community, and what we discovered was it wasn’t as negative of an alternative as we thought, and which was really surprising to us. You know, because we thought, oh, it’s an obvious, preference would be towards the less invasive mode of administration, but it really wasn’t.

Stewart Gandolf
Interesting. Emily, I’m really curious about your war stories.

Emily Anderson

Sure. Yeah, so, recently we did a study on Prader-Willi syndrome. It’s a very rare disease; it affects mostly children. And the hallmark symptom for this particular rare disease is called hyperphagia. It’s a very insatiable hunger, and it’s extreme. Like, a lot of these people, these parents that I’m talking to in groups, have to have locks on their refrigerators and their pantries, and highly, highly monitoring every single thing, every calorie, everything that’s being put into their kids’ systems, because they just don’t have an off switch. They’re just so hungry they can overeat, and it’s detrimental. And when people think about Prader-Willi syndrome, that’s usually what people just associate it with, and that’s the symptom that it seems like all these medications are trying to treat. And we went to a conference recently, and I actually met up in person with a few people that we had met on some Facebook groups, because I was working on a study. And after just, like, talking to some of these people and listening to some of the symposiums and things we went to, we learned that hyperphagia is really just a piece of the puzzle. It’s, yeah, it’s a big one, and it’s great that they’re trying to develop drugs that treat this specific thing, but a lot of these kids also have neurological issues, a lot of them are on the autism spectrum, or have ADHD, or some sort of other thing that’s going on that sometimes is actually more detrimental than the hyperphagia itself. And I knew that that was a piece of it, but I guess I didn’t realize how these comorbidities really were affecting these people, and how important they were, and it’s not just hyperphagia is, you know, the one and done thing for this thing. It’s just a piece of the puzzle.

Stewart Gandolf
I have a question related to that, but I’m going to pin this idea for a moment. So, we talked a little bit about this, but I’ve just wondered if there’s anything else about sustaining the engagement and trust. Anything else that you guys do that’s really important to your success?

Sugata Biswas
Emily, do you want to start?

Emily Anderson
Yeah, when I join these groups, and actually make real connections with these people, and I keep in touch with them. Like, I get Christmas cards every year from families I’ve never even met before, and it’s actually really fun to meet people and connect with them and actually be able to just build a real relationship with these people. And I know it’s just social media, but I’ve met plenty of people that I keep in touch with. It’s really fun to see these kids grow, and people going on vacation, and keeping in touch and using social media how it’s intended, to be social and share what’s going on in my life, see what’s going on in their lives. When there’s not an active project happening, I’m still a member of these communities, and I’ll comment on posts where it’s appropriate for me to comment, you know, it’s not it’s not always appropriate. I don’t have a child with some specific rare disease. But if I have information to share, I’m always happy to share it. If I see an interesting clinical trial or something that’s happening in the news, I’m always the first to pop in and share it with the group and just get people’s feedback on it, even if I’m not working on a project. And I think it’s really important to just let these people know that we haven’t forgotten about them, you know? And even though we just did one project with them. We are really trying to create  an authentic, nice, relationship with these people, and I think that they appreciate it. I do.

Stewart Gandolf
So, I think that I can see, just as an editorial comment, Emily, I can sort of see that with you personally. Emily called us for our listeners’ sake, with a tight deadline, and things are going crazy, and we developed a friendship, like, instantly. I can see why you’re good at this. You just have a natural sort of empathy. So, I wish I was as likable as you.

Sugata Biswas
No, no, no, I completely agree. Stewart, I agree with your statement. I think part of the success that Cadence has is certainly driven by the authentic way Emily shows up and does her job, but it’s not just a job, it’s really, you know, a passion, it’s a true love for this community. And I think what backs it up, and in terms of success factors for us, and why we’ve continued to engage with the rare disease communities is because for us as an organization, you know, it very much aligns with our principles of being that go-between where we can feel like if we do our job well, if we can help information from one group to the other group, that better decisions and ultimately better healthcare is administered. I think communities—rare disease communities—feel that and I think Emily is a really good ambassador, an example of that, of what we believe fundamentally within the company. And then also consistency. As Emily mentioned, it is important that you’re not a number to us, you’re not just, oh, take the survey, answer, we want your data, and we move on. It’s not like that for us, and so I think all those things have contributed, not just to the initial success of Cadence being in the rare disease space, but also the continued success.

Stewart Gandolf
So I’m curious, I’m coming back to a question I had a moment ago, and you just led me right back to it. I’m assuming you’re doing surveys, so you have quantitative data. But there’s a qualitative side to this, from talking to these people. Do you communicate that, too, and how? Because I think that’s important, otherwise you’re looking at a bunch of numbers, especially if you’re following a survey, and there are things that you hadn’t anticipated, the survey won’t cover that. So, I’m curious, how do you guys do that? And is that an important part of it, the sort of qualitative side?

Sugata Biswas
Absolutely, absolutely. You know, we, in the market research space, we say that quantitative data is telling you what is happening, and the qualitative data, when you’re actually talking to them, you understand why it’s happening. Right. And, what’s really important in, you’re engaging with, caregivers, with patients in rare diseases, is that you fundamentally come in, very much with the attitude that you’re trying to learn. Because if you come in that you know everything, again, insincerity and nonsense like that, these communities will sniff out in one second, and basically the interview’s done. But we come in with an attitude that we are trying to learn, we are trying to be their voice, and we’re giving them an opportunity to communicate, albeit, you know, in a rolled-up, in a large context, but we do want their opinion. And what’s important is when you’re talking to patients versus, let’s say, healthcare providers, the language that we’re using. The attitude you approach with the language that you use, and your willingness to discover. If you’re coming in there just to confirm biases or assumptions, again, that kind of nonsense, communities instantly sniff out. Emily, anything to add to that?

Emily Anderson
Yeah, I think that, as we’ve been doing this work and we’ve been, you know, working across all these different types of people and things, what I have found that’s a common red thread between all of them is people want to share their experiences. People like talking. Answering a survey is great, but at the end of the day, I find that people are way more open to having a conversation and wanting to share their experiences, because you can’t just, you know, explain what your day-to-day is by answering a survey. People like talking, and they like sharing their experiences, and I think that’s something surprising that I found doing this work. Because it’s isolating, it’s sad, you would think that these people are dealing with this 24/7, maybe they wouldn’t want to get on a phone call with you and talk about it some more, but it’s actually quite the opposite. People really do like sharing their experiences, and I think that they like talking to people who have genuine interest and who care.

Stewart Gandolf
Wow, that’s great. Sugata, you said earlier about the stats, I’m trying to remember, how many people have cumulatively a rare disease? Did you say that was…

Sugata Biswas
So a disease is considered rare if there’s 200,000 people or fewer in the United States with disease. And ultra-rare is 1 in 50,000 people, so it totals to about 7,000 people in the U.S.

Stewart Gandolf
Right, sorry, you said cumulatively, was it, like, 30 million? Did I hear you correctly?

Sugata Biswas
Exactly. If you combine all of the rare diseases cumulatively.

Stewart Gandolf
Amazing. So, there’s roughly 330 million people in America, so that’s like a 1 in 9 chance you’re going to have a rare disease, some rare disease. That’s a little scary when you stop and think about it. Each individual disease is rare, but having a rare disease is not that rare, if you think about it that way. That’s crazy. I have no idea the numbers are that big. So, I’d like another question that you guys mentioned that you do a lot more than just rare disease, but I’m curious, this is not something we talked about before, but what have you learned from the rare disease space that makes you better at the more traditional surveys? Are there any things that you’re like, because you’ve had this experience, because you’re, I don’t know, to me, the rare disease space is like playing in the major leagues. So, you must have learned some tips along the way that help inform all the work you do. I’m curious. Anything like that?

Sugata Biswas
Yeah, yeah, I mean, again, I’ll kick things off. I think, you know, how we engage with communities, we’ve really learned a lot about, you know, how do we approach patient communities, how do we approach caregivers. How do we, the language that we use, and not just the approach, but in the engagement, and then how do we create real community? I think for us, what we like to think of ourselves as, we’re building communities and opportunities for people to convey their insights to us that we can then disseminate to other people who are trying to develop drugs to help them. And so, those kinds of processes were really instructive as we, let’s say, we learn how to build a community in one rare disease, then how does that translate to, let’s say, something bigger, like, let’s say, if it’s breast cancer, something really big like that? How can we take subpopulations of within breast cancer, and also to help build those communities, and then create that dialogue? Emily, anything on your end?

Emily Anderson
Yeah, I think that something that I’ve learned across tons of different projects that helps with the rare disease thing is just, the way you communicate information. Some of the stuff that we’re learning is very complex, and when you learn about these diseases it’s not necessarily in, like, English, right? It’s, like, very complex, it’s a lot of scientific jargon, and a lot of people just don’t understand. So, when you actually take that information, we’ve got a great team of some in-house PhDs that are amazing at taking these complex thoughts and all of the science, and then just disseminating it into a way where we can communicate with real people who can understand it, that don’t have PhDs and don’t have a background in oncology and this, that, whatever.

Stewart Gandolf
I actually have another follow-on question. I have two more questions; then we’ll be done here. One is, that just occurred to me based on what you just said. So, watching what’s happening with AI, ChatGPT, Perplexity, these different large language models, people are taking these very complex diagnoses they don’t fully understand, and putting them into ChatGPT, and what does this mean? And getting answers. And, on the recent ChatGPT 5 announcement, there was a segment where patients said they actually decided what to do because of what ChatGPT did, because the doctors were arguing. So, I’m curious, is that part of the world when you’re talking to people now? Do you find that, these rare disease people are already consuming that too? Does that even come up in your conversation, Emily?

Emily Anderson
I haven’t seen it a lot in the conversations. I know that people are utilizing ChatGPT for a number of things. I do think it has, you know, pluses and minuses. I think it’s great that people can get some information and get some things explained to them, but you really also lose the human touch, right? Like, you’re just getting… you’re trusting it as much as you’re trusting Google. I know we’ve run a couple surveys before, too, where we’ve asked people where they get their information and what they trust the most and the least, and a lot of people don’t really trust AI yet. It’s still very new.

Stewart Gandolf
Yeah, for sure. Well, it’s interesting, my wife came back with her blood test, and she’s fortunately pretty healthy, but she’s like, this was amazing. What do these markers mean? So, we’ll see how that evolves. Last thing—any final words for you guys, and about this topic or any other topic, and then also, how do people reach out to you guys if they’re interested in doing research in this kind of category?

Sugata Biswas
Absolutely. I’d say final thought on my end would be that when you think of, patients, when you think of these rare diseases, when you think of patients, when you think of caregivers, the one thing I would caution everyone is that they’re not monoliths. They’re not, oh, because you have this disease, this is the way you are. I think, Emily’s point earlier regarding even symptoms, and how certain symptoms, you know, as dramatic and life-altering as they can be, aren’t necessarily experienced the same way across the board. I think—and even your example regarding AI and the use of AI—not all the patients and caregivers are the same level of tech-savvy. Some are, some aren’t. I think approaching these communities, it’s approach with caution, approach with sincerity, approach with authenticity, and most importantly, approach with an attitude that you want to learn. I think that would be some of the key things that we’ve learned. Emily, any final thoughts, and how can they talk to us?

Emily Anderson
Thanks so much for having us. This has been a great discussion. If anyone has any questions, definitely visit our website, cadencecr.com. We are on LinkedIn, we have a great website, there’s a couple videos on there that get a little bit more detail on exactly the work that we do, and some great examples up there.

Sugata Biswas
And email us. Me email is S-B-I-S-W-A-S at CadenceReasearch.com, and Emily’s is a little bit easier, it’s E-Anderson at CadenceReasearch.com. Please feel free to reach out, reach out to us. We’d love to engage. We are committed to the rare disease space and, you know, want to engage more, and anywhere we can help, we’d be happy to.

Stewart Gandolf
I recently met somebody at a medical device show that had, is starting a new, rare disease venture, and I really appreciate your guys being willing to speak with her. I think you guys are just very genuine, easy to work with people, and we appreciate that. For those people that are listening on the streaming services they just heard, if you’re watching the video, or through our website, I’ll also have links on the website as well to make it easy for people to find you guys. Anyway, thank you guys, this was fun. I knew it would be. It’s a sort of sensitive topic, an important topic, a human topic, and I learned some things today, so I appreciate you. Thank you.

Emily Anderson
Thank you so much.

Sugata Biswas
Alright, thanks, Stewart. See you.

Stewart Gandolf
Bye.