Every February, the Super Bowl comes around, bringing with it a slew of clever, splashy ads that (for me, at least) are usually more interesting than the game. The world’s biggest brands spend tens of millions of dollars in an effort to reach hundreds of millions of potential customers. Their challenge is to cast a wide net and hope that their spots are impactful and memorable enough to cut through the noise. It’s a numbers game. Go big or go home.
Another lesser-known event that happens every February is Rare Disease Day. It gets a lot less attention than the Super Bowl, of course. But it’s a reminder that there are millions of people around the world who are living with a disease that few people know about and for which treatment options are limited.
The challenge that healthcare marketers face in reaching people with a rare disease is very different from the challenge those bigger consumer brands face when crafting their Super Bowl ads. You can’t just blast a message at a mass audience in the hopes you might reach the handful of people who could benefit from your product. It takes time and consideration and nuance to find just the right message and deliver it through just the right channel to just the right people.
A Different Kind of Numbers Game
In the United States, a rare disease is defined as affecting fewer than 200,000 people. For most rare diseases, however, the number of people affected is a tiny fraction of that. Take, for example, Friedreich ataxia (FA), a rare genetic disease that causes the loss of muscle control and the ability to walk. It’s estimated that in the United States, there are between 5,000 and 7,000 people living with this condition. And while I’m sure a lot of them might watch the Super Bowl, it’s simply not practical for marketers to spend $8 million for a 30-second TV spot that 125 million people will see just to reach those few thousand folks.
Very few people are aware of FA, and the same is true for most of the rare diseases out there. One recurring theme we hear is that rare disease patients wind up teaching their doctors about their condition because they’ve never heard of it before, let alone treated someone with it. If you’ve got a treatment for a rare disease, how can you market your solution to someone who isn’t even aware of the problem? Imagine you’re trying to sell an umbrella, but your audience has never even heard of rain. That ad is probably going to fall pretty flat.
This is why a critical component of rare disease marketing is disease awareness. Pharma companies and their brand teams typically spend 2 or 3 years in the leadup to a launch softening the ground and growing awareness for the rare disease their product treats. When healthcare providers know what kind of challenges patients face, they’re more receptive to a possible new solution.
Know Your Audience, Personally
Because rare diseases affect so few, it’s easy for people to feel isolated and alone. And because there are limited resources available to patients and their families, those with rare diseases often have to rely on each other for information. Tight-knit communities form to help support one another and provide advice. The members of these communities know and trust each other. They value the personal connections they make with each other and find inspiration in each other’s stories and experiences.
Marketing to these close communities requires more than the usual amount of care and authenticity. It’s not enough to throw together some quick market research to analyze key motivators of purchase intent. Brands need to build trust and real relationships directly with the people they want to help.
There’s a saying in the disability rights community, “Nothing about us without us.” It’s essential that people with rare diseases have a real voice in the marketing process. Bringing actual patients into the fold, sitting with them, hearing their stories, and taking their experiences to heart not only helps a brand gain insight, it helps patients feel like they’re a part of the process and that they’re not being sold a product by some faceless corporation—they’re getting support from another member of their community.
Victory for Rare Diseases
Rare disease marketing can be a tricky high-wire act, balancing analytics and authenticity, click rates and compassion. The audience for our campaigns will never be as big as those you see during the Super Bowl, and we’ll probably never get to work with Harrison Ford or Ben Affleck on a high-profile ad. But when we sit with rare disease communities and learn about the challenges they face and the dreams they have, we get something better—we get the chance to make a real difference in the lives of people who need it the most. I’d call that a win.
