The radically human cancer care brand

When someone finds out they have cancer, they need practical help, delivered in a clear, judgement-free way. No one knows that better than Liya Shuster-Bier, whose own diagnosis led her to found Alula, an online directory of products to help people through cancer treatment. While most cancer comms can be clinical or clumsy, Alula’s voice is honest, elegant, and empathetic. We sat down with Liya and former Director of Marketing Liberty Buttenwieser to find out more about the brand and its radically human approach.

Where did the idea for Alula come from?

Liya: In 2018, I was diagnosed with a rare and very aggressive form of Non-Hodgkin lymphoma, and I was stunned by how hard it was to find products to help me get relief. I was in Reddit forums, and in Facebook groups. I was literally asking total strangers in the hospital waiting room where they got their wigs, and how they were dealing with their PICC line management.

I was stunned that there were products that existed, but even my nurses didn’t know about some of them. I was like, ‘Why isn’t there a one-stop shop for all this?’ So that’s when I started to prototype Alula.

 

And how did you come to join Alula, Libby?

Libby: Before Alula, I was at [meditation app] Headspace. There, I learned how to take something a little bit obscure, where there’s a lot of science, and make it accessible and normalised. Then I went to Alula, where I learned so much by doing the full spectrum of customer research, ideation, and execution – both from a tone of voice and positioning standpoint, but also just actually doing the copywriting myself.

I think the biggest challenge for me when I joined Alula was that – I’m incredibly fortunate – I’ve never been a cancer patient, and I’ve never been that close to someone going through it. So it was a big education for me to speak to an unfamiliar audience.

“It’s hard to build a startup as an underrepresented founder. You feel like the odds are stacked against you. But with cancer, the odds were also stacked against me. And I tap into that for fuel.”

How has having, or not having, personal experience with cancer affected your work at Alula?

Liya: My own experience has obviously been a huge motivator. It’s hard to build a startup, and it’s really hard to build a startup as an underrepresented founder who only has access to 2% of venture capital in the United States. You feel like the odds are stacked against you. But with cancer, the odds were also stacked against me. And I tap into that for fuel.

Every single week I get texts from people in my life who have somebody in their life who just got diagnosed with cancer. So as much as you sometimes want to never talk about it again, you have this unbelievable well to source from that can help somebody else very concretely.

So in one way it’s been a massive unlock, but I am just one experience. I’m one human who went through it in her way. And really, we need to build for a kaleidoscope of humans who are going through it in their way. And that is why it’s been so important to have a team alongside me – people like Libby, who can say ‘let’s talk to our customers’.

Libby: I think Step One for me is always: get as close to the audience as possible. I like to start with a lot of research: talking to patients and their caregivers, doing surveys, reading stories. Because you have to get in the mindset of that person, and understand their struggles.

Liya: We bring in two customers a week, to really understand what worked and what didn’t work for them throughout their experience with us. We use these ongoing, live, very fresh customer interactions and interviews to guide everything we do.

We’ve had customer insights prove that the way I would have done something is not the overall community preference. Creating that rigour, so you get honest feedback and insight, is so important. It helps you build what people are truly craving. That has been a powerful North Star. And I credit Libby with that – listening to the user in a very data-driven way.

Did you learn anything from that audience research that surprised you?

Libby: One thing that I learned was that most patients care about products having the clinician stamp of approval nearly as much as they care about those products being vetted by other patients and survivors. Which is why all our products are ‘clinician-backed and patient-approved’.

So there’s a duality to the brand: we make sure it doesn’t have a cold, scientific, ‘at the doctor’s office’ feel, but we also don’t want to fall into the vein of pop-pseudoscience, or wellness.

“You need treatment to survive, but you need a lot more. Not just to survive, but survive well.”

How would you characterise Alula’s tone of voice?

Libby: It’s radically honest, but empathetic at the same time.

Liya: The brand is also extremely practical. We’re trying to help people stay out of the hospital, and equip themselves to find relief in an over-the-counter way.
And we have used humour a bit, but we have been careful about not being too quippy.

Libby: We wanted to be wry without being flippant. Because you obviously don’t want to minimise the tragic experience that many people are going through. But I also think some people gravitate towards brutal honesty. One of the initial lines that Liya wrote was, ‘Welcome to the club that you never wanted to be in’. I always loved it, because it reflects how we speak to the audience in a way that gets their mindset.

Liya: I think one of the things that Libby’s navigated well is: how do you make it approachable? And how do you make it honest and human?

A guiding light for our brand was personifying, you know, your cool aunt who lives in Sedona, Arizona, who had cancer before you. She’s pretty matter-of-fact, and you can call her at two in the morning with a really embarrassing question, and she won’t make you feel embarrassed at all. She’s where you can get the advice that no one else is going to give you.

Libby: The line ‘companion to your treatment’ was also something that resonated with folks a lot, because you need treatment to survive, but you need a lot more. Not just to survive, but survive well, and that also came into play with our slogan, which was ‘making life with cancer liveable’.

 

Can you tell us a bit about the journey that got you to your branding and tone of voice?

Liya: We were honestly quite intimidated to build a brand in the space, so we knew we had to do something beautiful, and different, and refreshing.

Interbrand took me on pro bono, and they were like ‘We’re just gonna whiteboard this on a Tuesday night over whiskey.’ The next thing you know, there’s, like, all these zones, and in the zone around navigation there was this word ‘alula’, which they’d put an asterisk beside because they rightly guessed that I didn’t know what it meant. ‘Alula’ is the part of a bird’s wing that aids in flight maintenance, flight navigation, and landing during turbulent air. It was perfect. And it was the guiding light for the brand experience that we wanted to build.

There are a lot of nature themes [in the brand]: the bird, the earthy brand colours. Cancer is really a mistake in nature. It is your natural cells unnaturally replicating in such a way that they cannot support life. And the treatment is an unnatural process too. It literally pushes you to the brink of dying, because it’s trying to kill something that shouldn’t be in your body. It creates ongoing organ damage, hair loss, the worst constipation you’ve ever had, peripheral neuropathy – where you cannot feel your fingers and toes. It literally inverts your senses.

So we’ve taken this tension between natural and unnatural, between turbulent air and guidance, between comfort and discomfort. We needed to cut through that noise, and create this little pocket of zen, this pocket of control, this pocket of integration.

“‘Alula’ is the part of a bird’s wing that aids in flight maintenance, flight navigation, and landing during turbulent air. It was perfect. And it was the guiding light for the brand experience that we wanted to build.”

And how do you maintain that sense of who the brand is and how it talks?

Liya: I think one of the tools that we’ve used to identify the constraints of the brand are ‘rooms of meaning’. So like with the name, it creates a space, right? Once you know what it means, it creates this room of meaning. And the visual identity also tells a story. It’s another room of meaning. And then the cool aunt from Sedona is another. And then when we invite our community to these weekly lunch and learns, where the team are all there listening to the patient, we create a fourth room.

I think it’s these four rooms that we’re constantly walking in and out of that help us create a direction that feels right – everything from how we write an email that promotes a discount, to how we take on a complicated topic, such as what post-Roe means for cancer patients.

It helps us navigate what otherwise feels very amorphous, or sticky, because you don’t want to do the wrong thing. You just want to do right by the patient. Those four rooms have helped us distil everything to these containers of truth… almost like barrels we can age ideas in. And they’ve helped us stay integrated as a company and as a team.

The tone of voice is refreshingly different to a lot of what’s already out there. Were you deliberately trying to move away from the tropes of cancer comms?

Liya: I really wanted to divorce from the metaphor of cancer as ‘a war’. Iit puts a lot of pressure on the patient to ‘win their battle with cancer’.

Libby: And on the flip-side, there are a lot of websites out there where it looks like the models are having fun. They’re like, smiling, putting on their new wigs, or trying on their bras. It’s just weird. That was the opposite of what we wanted to reflect, which was this kind of radical candour. Like, ‘No, this actually sucks. We’re not going to sugarcoat it.’

There are also a lot of cancer resources out there that look and sound like they haven’t been updated since the year 2000. So we definitely wanted it to be more modern, and have the sense that someone really ‘gets it’.

Liya: And I think that a lot of the brands out there, and even in the hospital setting, are so clinical and sanitised. And that’s because we’ve internalised this refusal to honour and talk about death and dying. It never really comes up at the dinner table. But science shows that facing your mortality while you are alive helps you live in the present and redefine your relationship to living.

I took a stance of like: I want to really be honest about it. I don’t want it to be an elephant in the room; I want it to be a vase in the room, the flowers in the room, at the centre of the table. And I think that’s the next chapter for the brand: how do we take on death and dying a little bit more?

“I don’t want death to be an elephant in the room; I want it to be a vase in the room, the flowers in the room, at the centre of the table.”

Your audience must be quite diverse – patients, caregivers; people who’ve been recently diagnosed, and people who’ve been living with cancer for years; people with good prognoses and people with a terminal diagnosis. How do you straddle all those groups?

Liya: My therapist always used to say there’s no hierarchy of pain. And I feel that way in terms of how we built out the patient experience. The disease type and stage inform your treatment plan, and probably the intensity of symptomatic burden, but there’s no hierarchy of disease state or stage.

Plus, when it comes to managing symptoms, what’s relevant isn’t so much the cancer as the treatment. My cancer was extremely rare; I didn’t meet somebody else who had it for two years. But I met people who had testicular cancer, and lung cancer, and breast cancer. And I was stunned to learn that our lived experience had less to do with whether we had testicular cancer or lymphoma, and more to do with whether we were being treated with chemotherapy or surgery.

That was the ‘aha’ moment for me – realising that actually, the everyday experience of managing symptoms has more to do with your treatment type than your cancer. And we’ve structured the product experience accordingly.

Libby: If you’re experiencing chemo side effects, you’re not going to go search for ‘liver cancer chemo side effects’. Your immediate need is: ‘I’m really nauseous’, or ‘I’m experiencing peripheral neuropathy’. It sounds simple, but I think the way that the navigation was organised was pretty novel, and I think it made a big difference to people.

Liya: Another big decision was: do we talk to the patient? Or do we talk to the patient and the caregiver? Because a sizable portion of our community are caregivers. And that makes sense, right? Because cancer patients are often quite debilitated.

Libby: I remember when I started, there were a lot of moving pieces on the website, where it’d be ‘for patients’, ‘for caregivers’, ‘for supporters’, ‘for survivors’. It made sense, but it also made us sound kind of disjointed. The common denominator between all of these people, for me, was patients. Because I think, if you were a caregiver and you saw writing and a tone of voice that was geared towards the patient, it would probably make sense, because you’re buying on behalf of that person – reading it with their eyes, almost. And, at the end of the day, that is the audience we’re trying to help.

 

Although you’re talking to a broad audience, it feels like you focus on the common experiences and feelings they share.

Liya: I had this moment of realisation when I was going through radiation. In the waiting room you see everybody coming in from their different walks of life – from different jobs, and different cities – all coming into this place of care. And then by the time you reach the radiation room, you’re all literally stripped down to your body, your scrubs, the same basic human fears and human wants.

Then in the radiation room, everybody else leaves before they turn the radiation on. Meanwhile you’re in this vessel so that they can really target the radiation to you. And chemo is kind of like that too. The nurses that are administering your chemo are in hazmat suits. This medication can literally kill them. So they are going as far away from it as possible. And you are going as close to it as possible. It’s going into your veins.

You’re so proximate… you’re so close to dying; and you’re so focused on living. It purifies your experience. People converge around the same things. Things like, ‘I want to live’, ‘I want to be there for my kids’, ‘I want to focus on love, and breath, and health’.

But the reality is, you’re not all the same. There are real constraints around affordability, and access. So I think there’s this tension between the very real social determinants of health and patient outcomes, and the very stripped down truths of human survival, human compassion, and human resilience.

What’s next for Alula?

Liya: To have the kind of scale that I’m dreaming about, we need to partner with the healthcare system.

My hot take for how [US-based] cancer care has evolved is: ultimately, everything’s in service of delivering very expensive chemotherapy and surgeries. Cancer is the profit centre for a lot of hospital systems. It’s where you make the most money. And you don’t really make money on sending a patient home with a peripheral neuropathy mitten; but for the patient, it’s life changing. And I think that’s what’s fuelling the entire digital health industry in the United States right now – patients are extremely unhappy with what they’re receiving, but the incentive structures are not patient-centric.

So I’m excited to bring our way of being, to the healthcare system and building a coalition of clinicians and providers who deeply believe this patient-centricity is the future of cancer.

 

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