Rare Disease, Uncommon Marketing
A healthcare challenger brand has a unique set of circumstances. It may not have a clinical advantage, first-in leverage, a unique mechanism of action, a breakthrough product profile, or the ability to outspend. What it does have is potential that needs to be met. In the case of companies tasked with marketing a rare disease treatment, there are even more specific challenges that go beyond brand-building.
Challenges in the Rare Disease Community
Estimates indicate there are over 7,000 rare diseases affecting over 300 million patients and their families worldwide. Sadly, about 95% of those rare diseases currently lack approved treatments. There are also far fewer ways—or time—to diagnose or identify patients compared to conventional diseases. That’s why we feel developments that accelerate identification, diagnosis, and treatment of rare diseases need to be celebrated and appreciated for the minor miracles they are. Awareness translates to attention that drives action. Marketing a rare disease through education about the condition and possible treatments can help to put that cycle into movement.
Subcategories of Rare Diseases
What’s more, “rare” isn’t just rare anymore. There are deeper categorized subsets of rare diseases. There are ultra-rare diseases with fewer than 7,000 cases worldwide. Some of these diseases are so rare that only a few people in the world have them. Nano rare patients are those who have disease-causing mutations unique to them or have a disease with a known worldwide prevalence of less than 30. They bring their own separate challenges; the job of educating never stops in the endless effort to increase awareness and facilitate more diagnoses. Just getting on the rare radar means there’s hope for advancing knowledge, which transitions to actively searching for even more information.
Marketing Rare Disease Treatments
When a long-needed treatment makes its way to market and it falls to us to properly execute and raise awareness of the condition and treatment, we feel compelled to create visuals and messaging with the most empathy and impact possible. Most of all, we must continue to convey important disease state information that helps people living with rare diseases and helps physicians look for what must seem like needles in a haystack.
The other compounding factor that drives how we market is that HCPs (healthcare providers) have less time than ever. This means less time to investigate confounding symptoms, less time to learn or explore outside their core competencies, less time with patients, and less latitude to run tests that may help identify a rare condition.
When we are developing campaigns for rare, ultra-rare, or nano-rare diseases, we need to strive to meet the multiple goals of raising awareness, providing helpful information for patients, and keeping the challenges of physicians’ ability to diagnose or treat at the forefront.
“What’s more, ‘rare’ isn’t just rare anymore. There are deeper categorized subsets of rare diseases—there are ultra rare diseases with fewer than 7,000 cases worldwide.”
Chasing the Zebra
The zebra is the spirit animal of the rare disease community. They have been readily adopted as a symbol and mascot for patients and families because of the connection to being different, unusual, and not as common as its cousin, the horse. But there is an actual clinical reason the zebra makes sense.
Historically, in diagnosing disease, medical professionals are taught to follow Occam’s razor, which dictates that all things being equal, one diagnosis—the most obvious, as opposed to several others or a rare disease—should be initially sought to explain a patient’s presentation. While this can often be helpful in getting to the real diagnosis quickly without overthinking, it can also limit thinking about the full picture. For example, Occam’s razor dictates that if a physician “hears hoofbeats,” they should think of the obvious answers first—expect to see a horse, not a zebra. Occam certainly didn’t anticipate that fully 10% of Americans are zebras!
Going Beyond the Simple Black and White
How do we capture the appropriate tone and messaging when marketing these medical breakthroughs? Our storytelling must be at once empathetic and informative, educational and brand-impactive. Advertising to the rare disease community should highlight the extraordinary medical and scientific innovations so far, focus on the progress that still needs to be made, and empathetically portray patient journeys. It needs to generate showstopping, awareness-building creativity while fostering a human connection to medical innovation. Of course, it should be compelling, yet sensitive to patients and families.
It’s an approach that considers the entirety of the constituents of rare disease care, including physicians, patients, families, advocates, and policymakers. It’s not always strictly black and white, but marketing to rare disease communities is rarely done well without keeping the zebra factor in mind.
