2026, Future Pharma - Fireside Chat_ From Diagnosis to Advocacy_ Redefining Rare Disease Experience

Announcer: Last session before lunch, we'll invite Gene Zlotnikov, associate director of omnichannel marketing and rare disease at Amgen, and his colleague Karina Portnoy, also associate director consumer marketing rare disease at Amgen, to the stage. Thank you

Gene Zlotnikov, Associate Director, Ominichannel Marketing, Rave Disease, Amgen: Wow, that might be,

The first time anyone's ever pronounced my last name correctly, so congratulations.

Karina Portnoy, Associate Director, Consumer Marketing, Rave Disease, Amgen: I better practice.

Gene Zlotnikov, Associate Director, Ominichannel Marketing, Rave Disease, Amgen: Welcome everyone.

Thanks,

Thanks for having us. So really excited to be here. As I, as

Mentioned, my name is Gene, I work at Amgen on one of our rare disease,

Treatments, and oversee our HCP digital teams as well as our consumer marketing teams.

Karina?

Karina Portnoy, Associate Director, Consumer Marketing, Rave Disease, Amgen: Yeah. Hi, everyone, Karina Portnoy. I work with Gene at Amgen as well,

And lead another one of our,

Rare disease medicines

on the consumer side.

Gene Zlotnikov, Associate Director, Ominichannel Marketing, Rave Disease, Amgen: So what keeps

me passionate in rare disease is really that proximity to impact. It's something where,

Every single patient matters.

And

When you h- when you approach it from that mindset, it completely changes how you approach the work, how you approach the strategy, how you approach activation, and how you apply empathy to everyday moments of working with patients.

What keeps you passionate about working in rare?

Karina Portnoy, Associate Director, Consumer Marketing, Rave Disease, Amgen: What keeps me passionate is really that patient perspective.

Because in my role, my number one customer is the patient, and I love that everything that my team and I work on, we really get to evaluate everything we're doing through that lens.

And we also get to really bring patient stories to life.

We get to personally meet patients, talk to them, understand their journey, and that's very rewarding.

Gene Zlotnikov, Associate Director, Ominichannel Marketing, Rave Disease, Amgen: Yeah. By the way, who is hungry in this room? Raise your hand. Yeah? Okay. I realize we're standing between you and lunch, and it's two people on stage asking big questions with probably limited answers.

That's very much like rare disease, by the way. A lot of uncertainty, a lot of questions, a lot of friction, right? And so what we wanna talk a little bit about today is, how do we move patients from those moments of questioning what they might have moving from diagnosis to the moments of having treatment conversations with their doctors, to staying on treatment and being adherent to treatment?

So let's start at the beginning. Those initial moments, when a patient finds us, what are they really looking from us?

Karina Portnoy, Associate Director, Consumer Marketing, Rave Disease, Amgen: Early in the journey what we've seen is that patients surprise, are not really looking for a brand. They're looking for answers. They have potentially spent years trying to really understand unexplained symptoms, piecing these symptoms together to try and get to a diagnosis, or looking for a right specialist.

And as AI and search becomes increasingly, as we keep hearing all morning- ... one of the first stops, if not the, the first stop, we really have a responsibility, and it's our role to make sure that credible information is there for patients to be able to find that. And sometimes, it's really not brand information or treatment information that we should be providing to patients that early in the journey, but where we could service them the most is giving them education to help them ask better questions, to teach them how to advocate for themselves so that ultimately they can get to the right care for them and do that quicker than what we know to be decades and decades of diagnosis journeys.

And additionally, Gene, as we're talking about AI, I also was, ... I forgot who it was who said they're not gonna mention AI. I wanted to be that person- Yeah ... but I already broke that rule in the first two minutes. But with so much focus on AI and that next best action, how do you feel we should be using those tools so that they're not just used for efficiency, which I think is something we've all done, but actually use them to improve patient experiences?

Gene Zlotnikov, Associate Director, Ominichannel Marketing, Rave Disease, Amgen: Yeah. It's funny, I was on this stage a year ago, and I made the same comment. I said, "I'm not gonna talk about AI," and I think I'm mentioning AI more than I've ever mentioned it in my day-to-day job. It's clearly here to stay. I think what's interesting, actually, a juxtaposition from the last presentation, I disagree with some of the points made.

I think A- AI will be incredibly helpful for patients who are living with rare disease. Most of these patients are in situations where they're, spending months and years trying to understand what symptoms they have, and actually having answers in some ca- capacity should be really helpful.

For us, as marketers, our responsibility is to make sure that we're not just out here creating tons of different messages, but we're really focused on creating more meaningful messages. When it comes to next best message, for example, you hear those terms, but for us, it's really understanding what is the next best need.

Sometimes for a patient, it might be helping them get to a, a second opinion or finding a specialist. And when we focus on that, that really makes a hu- a huge difference. For example, from a DTC standpoint, traditionally we would drive to a website for patient engagement or giving them a resource.

Now, they might n- not be even going to our website, right? So making sure that we are actually giving them the right resources, to your point, credible information doing a GEO audit, and really understanding what questions are they asking. And I think that's one thing I would say just as a takeaway, is if there's anything that you can do, it's understand what questions are your patients asking.

Start there, and then that can really help you have a strategic conversation with your cross-functional partners to better answer those questions and then, optimize your website, optimi- optimize your resources, and then validate that with patients as well. From an HCP standpoint, th- there, there's really all

It's really all about those moments of education gaps, right? So we know that, in many cases, our patients are more educated than their HCP counterparts, and so it's finding the moments of where are HCPs engaging, where are they not engaging, and then using NPP to optimize and figure out how can we reach- those doctors in ways that the field can't.

So looking at, vacant territories, hard to reach HCPs or high opportunity areas, and then supplementing all of our NPP efforts to reach those those doctors in a way that maybe the field can't. So there's a lot of insight gathering there, but that- those are areas that we can continue to focus on.

So as we think about moving from that, the, those initial moments of discovery and recognition to now having more treatment-related conversations where should we really be investing when it comes to that?

Karina Portnoy, Associate Director, Consumer Marketing, Rave Disease, Amgen: Yeah the other, outside of AI, the other theme today has been trust, right?

Yeah. And so as a patient is moving towards that from diagnosis and then that exploration towards treatment decision, trust really does become everything, and that's why advocacy organizations patient ambassadors, physician ambassadors, patient-to-patient support groups really become important here because they help patients feel less alone.

They help them feel, "Oh, there are other patients like me. It's not just me." And also gives them some confidence that, and there are also physicians who are actually passionate about treating the, those conditions, those rare conditions that may have, and maybe for years other physicians have really dismissed those.

And on the digital side, we really should be investing into discoverability with AI and search and also education so that patients can connect to those resources and as well as connect to the right specialist at the time when they're doing majority of their, like they're actively searching and actively looking for for answers.

And, as we think about it, as we're talking about connecting patients with the right physicians, Gene, my question to you is, how do we make sure that these omni-channel experiences feel connected and not fragmented like they may be, right? We hear a lot about this disconnect between HCP and patient dialogue, so how do we make sure that those experiences feel feel connected for both patient and physician?

Gene Zlotnikov, Associate Director, Ominichannel Marketing, Rave Disease, Amgen: Yeah. A- and I think this is where rare disease really differs. We have a situation again, where in many cases our patients are much more educated than our doctors. So a patient spending months or years trying to understand what they have, they become an expert. When we hear these stories all the time where a patient may come in and they say they're telling their doctor what they have or they think they know what they have, and that doctor maybe has seen one or two patients in his life or maybe no patients in his life.

So that creates a ton of misalignment. So the first question that I think we all need to ask is, what kind of conversation do we want the patient or the doctor to have in the room? We start there. That opens up a much more rich dialogue for you to have with your teams to have a shared mission, to have a shared kind of vision and strategic goal of this is the type of conversation I wanna ha- I want the patient and the doctor to have.

So starting there is really helpful. And then from there you can actually build y- and coordinate your plans together. You could build your patient journey, you could build your HCP plan, but it's not about building it in silos, it's about actually building it together in a collaborative way.

By the way just one point about the advocacy groups that I think is an important one to mention is They play such a central role, but it's not just about raising your hand and say, "I'm sponsoring the advocacy group and giving them money." What we try to do and what we've done a lot of is actually building content together with them and empowering the advocacy groups to support core messages that we as an organization are supporting.

So for example, maybe the core message is, "Hey, in this disease state, there are now newer treatments that are FDA-approved that patients should really be talking to their doctor about because they're newer, they've been tested for this disease state," what have you, right? That's a big f- focus of ours, right?

But if you're working hand-in-hand with the advocacy groups to coordinate those, those messages, that is really important. So they play such a central part of that between the patient and the HCP that you can't forget about it. So again, I think that's one area where it's like asking that initial question and then building those experiences together is really beneficial.

And then again, old school thought, communication, sometimes working in a very large organization is tough. You have a lot of different players, you have a lot of different teams, and it becomes very siloed, and people don't necessarily know what other teams are doing, right? And so actually informing the field, "Hey, I've got this new DTC push that I'm doing.

Let's make sure that we're creating resources and materials for you to educate your doctors so that they understand, so that you know that a patient might be coming in the door raising their hand and talking to you about about treatment." And we spend a lot of time empowering patients to be self-advocates, to be shared decision-makers.

So I think when we do that, they can come into the room much more confident, and the doctor can actually know exactly what to expect, so those conversations are just more, more coordinated. To that end, Karina, what are your thoughts on, how are we truly listening to patients in this community as opposed to just marketing to them?

Karina Portnoy, Associate Director, Consumer Marketing, Rave Disease, Amgen: Sir, that's a good question to start with, so you're on the right track there. But really listening to a patient starts with making them truly your partner, not just a research respondent. So something that we've done is we have patient councils, and we have ongoing engagements with the members of the patient council.

We talk to them and find out really important information from them, like what channels matter and where should we, what are the gaps that may exist. And then just as importantly as what we've been told by patients is what we've done is we've looped back with those same patients, the same folks that gave us feedback and were together with us in that co-creation, and we show them what we've done with their feedback.

We show them how, something they opined on, a year ago now influenced XYZ strategy, and we actually demonstrate that to them. And that really makes them feel like they're part of the game, right? They're part of this. And that level of partnership what I've seen is it leads to insights beyond just, informing our communications or informing our cr- creat- creative.

It actually informs really important and big key business decisions. And what we've seen is when patients feel and see that kind of partnership from you as a brand, as an organization, they become advocates, and they become advocates not just of their rare condition, they will even become advocates of your brand or your organization.

I had a patient one time tell me, I've been on lots of medicine in my life, and never have I seen a live person, a human, behind my medicine. Never have I been, interviewed by somebody from the company that makes my medicine or given the support, and the help and the resources."

So there's really not much more rewarding, I think, in a pharma marketing role than that, right? When your work is recognized and your brand is recognized and your company is- Yeah ... recognized as being out there on the forefront supporting.

Gene Zlotnikov, Associate Director, Ominichannel Marketing, Rave Disease, Amgen: Yeah. I total, I totally agree. I think, like- If a patient is actually out there saying, "Wow, you really care," that says a lot.

And I think when you... Sometimes I tell my parents when like, or my family, I'm like I work in pharma, but it's not big pharma." Y- we all have to clarify or sell ourselves and make sure it's like, "Hey, it's okay. We're m- we're good people," what have you. But I think in rare disease, when you hear those, those moments where patients actually recognize that, it's really important.

And one of the, that I think leads us to a little bit of a transition here to thinking about when patients are starting on treatment, right? Our time doesn't end. And so talk a little bit more about that.

Karina Portnoy, Associate Director, Consumer Marketing, Rave Disease, Amgen: Yeah. So- ... one of the biggest misconceptions that I've seen in marketing is that a patient's treatment decision has to do with,

Gene Zlotnikov, Associate Director, Ominichannel Marketing, Rave Disease, Amgen: Oh, thank you.

So-

Very nice. That's so nice ...

Karina Portnoy, Associate Director, Consumer Marketing, Rave Disease, Amgen: see, this is marketers all working together-

Gene Zlotnikov, Associate Director, Ominichannel Marketing, Rave Disease, Amgen: This is what we're talking about here

Karina Portnoy, Associate Director, Consumer Marketing, Rave Disease, Amgen: ... collaborating, helping each other. But one of the biggest misconceptions is that a treatment decision by a patient is made because of one single interaction or one team. And th- we wish that was true, right?

That would make our job as marketers oh so much easier. But the reality is patients rely on marketing, on field sales team, on medical, patient access, patient support services even site of care partners all to help them along their journey. But as I think one of the other speakers had mentioned before, it's needs to still be one journey.

A patient needs to be experiencing as one journey, even if there's, dozens of different teams that are supporting them along the way. And, that type of really cross-functional collaboration when the team stop asking, "What's my role? What's your role?" And they're really s- asking, "What does the patient need?"

And then collectively all aligning on, okay, let's all do what we need to get the patient there to remove whatever barriers may exist. And I've seen that type of collaborative functioning and collaborative work really then actually even helps with omni-channel strategies, so they all lead into each other.

Gene Zlotnikov, Associate Director, Ominichannel Marketing, Rave Disease, Amgen: Yeah.

What's interesting with that is, I worked at an organization where consumer marketing ended, and your job was done, right? And I'm sure some of you can resonate with that. What's interesting in rare disease is we are on a weekly call with consumer marketers, with HCP marketers, with site of care, with our, what we call patient access liaisons.

Those are the people in patient services that are helping our patients, right? And so that's such a different perspective, I think that you take in, in rare disease.

Karina Portnoy, Associate Director, Consumer Marketing, Rave Disease, Amgen: Yeah. So I think, Gene, given your role and what you already started talking to what do you think that success in omni-channel in terms of patient experiences and that type of work should look like in rare disease?

Especially when, as we know, in rare disease, every patient is irreplaceable.

Gene Zlotnikov, Associate Director, Ominichannel Marketing, Rave Disease, Amgen: Yeah. First just as we think about where we all are in our gr- organizations, when we talk about omni-channel, right? Just be honest with yourself, right? What does your organization look like? What does your organization need?

And what does the patient need? What does the provider need? Sometimes maybe it's not a fully connected omni-channel strategy, or every channel's connected. Maybe it's one or two. Maybe it's none and you really have to think about, again, where's the organization at, and are you ready for that?

And how is that gonna impact the patient experience or the provider experience? So that's the first thing. When it comes to success in rare disease loaded question, but I think generally it's actually a lot of what's been talked about earlier. It's a lot of focus on patient outcomes.

One of the examples that I would say is our medical system is incredibly complex. You know who it's more complex for? Patients with a rare disease. Because many of these pharmaceutical... I'm sorry, many of these insurance companies have never heard of this disease, and it requires some pretty horrible step requirements for patients to take.

"Hey, you have to fail on this one therapy before you start on this one." Okay, that's not really working for them, right? But there are ways to navigate that. And so one of the things we've been doing, for example, is helping patients better understand the complexities of the healthcare system and how to become better self-advocates for themselves on how to navigate that.

How do you measure that? It's a little hard, but that's where we're talking about how do you go beyond just digital KPIs and just do what's best for the patient. So maybe it's a conversation with p- five patients in a room where you're educating them on that. Maybe that creates better outcomes for them to be more empowered with their doctor to speak up and become better shared decision-makers.

Maybe it's i- it's about perception of what your brand and what your organization is in the marketplace with patients, right? So I think that those are some of the big areas for success. And the last one, okay, I'll say AI, I'll bring it back, because it is incredibly important, right?

If you're not discoverable, you're invisible, and we have to be really focused on discoverability. And if AI is going to be the first place for patients to step- to stop at, it may not be the most trusted, right? We still have to focus on peer communities, patient communities, advocacy groups.

But if it is gonna be the first stop, discoverability is going to become the new metric for awareness or a more important metric for awareness, and I don't see a lot of conversation of happening of that. I know it came up in a presentation earlier, which is good, so we're starting that. But I think that's a really big focus for us going forward.

So as we wrap up Carina, w- what would you say is one or a few lessons that marketers in the room could take from rare disease?

Karina Portnoy, Associate Director, Consumer Marketing, Rave Disease, Amgen: You know me well, I can do one, which is why- ... I have, two pages of notes that was originally cut down from five and from 10. But I would say the-- my biggest takeaway in being in rare disease pharma marketing is every patient really is irreplaceable.

There's just... It just is. And if you as a business, as an organization, as a team really adopt that as your business mantra- Results generally will follow. That's we like to... that's the mindset that we tend to operate in, and that really is our business mantra. Every patient is irreplaceable.

It is, we have a responsibility. We have a responsibility to help them in all of the ways that we've talked about here in all of the ways that we talked about educating them. And when you take care of the human needs, when you figure out what's important to the patients I haven't really yet seen, outcomes be- Yeah

not successful for that.

Gene Zlotnikov, Associate Director, Ominichannel Marketing, Rave Disease, Amgen: Yeah. It's the mindset of if you don't do it for them, no one will, right? And that's such a important way to think about your everyday work, and how you can come in and actually generate new ideas that you didn't know were possible, right? We know that our population is so niche.

We know that we can't reach everyone, and so we actually have to be much more creative in how we do it. And when you apply that mindset of what are the right questions that we need to answer for patients? What kind of conversation do patients and doctors wanna have? If we don't do it, no one will.

That's the mindset that we can have and something I think anybody, whether you're in rare or not in rare can, can take away. So thank you. Any questions? Yeah. Oh, the question was, is lunch ready? Yes, it is. Great.

Announcer: Perfect.