Orphan Diseases—Go Beyond Pharma 101

Imagine you’re at a luxury car dealership. You’re interested in getting this sexy high-end sports car, and even though the price tag is serious, you go ahead and ask the salesperson about the specifics of the offer. You’re given an empty stare at first. Then you hear: “I’m not comfortable talking to you, but…here’s a really informative brochure.”

Luckily, luxury car buyers are unlikely to ever be treated that way. However, many patients living with an orphan disease could tell you stories that sound exactly like that. Of course, one can argue that buying a luxury product is completely different from taking potentially life saving medication, and that the decision for or against a drug should always be based on clinical need. True, but does that justify treating every patient like some supplicant who is at the mercy of outside powers? Of course not. Neglecting patients is not just morally wrong—it’s bad business as well.

Orphan diseases hold a special status with pharma companies because regulations encourage research and development in this area, and because price sensitivities are not as pronounced as in more common indications. If the market is really small, it is easier to justify pricing that truly rewards innovation. As a consequence, each patient on treatment for an orphan disease is a high-lifetime value customer.

Co-creation Helps to Build a Loyal Patient Community

In most industries, when few individual customers generate a large proportion of revenue, companies go out of their way to make sure these customers are happy and stay loyal. Think of airlines and how they reward frequent flyers with perks that increase gradually along with the value generated by these individuals. Why is it that in medicine, the best they can get from their drug maker is a brochure about their condition and the drug they’re on?

Promotional materials are not what they need. Providing rare disease patients with the white-glove service they deserve takes various co-creation efforts. Companies need to interact directly with patients and find out together how a long-term partnership can come to fruition to everybody’s benefit. Because of the size of orphan markets, nobody will conduct syndicated market research. So if a company wants to learn about a population of just a few thousand or less, they will have to run their own advisory boards and focus groups.

Redefining Professionalism

Through co-creation, patients find their voice, so they and their stories can finally be heard. Stories are some of the most powerful assets in patient communication. They foster a sense of community—the need for which is elevated in the orphan disease space.

The emotional story format makes complex information understandable—the way it’s processed in the brain means people remember it, sometimes for a lifetime. But most importantly, by talking to the heart as much as to the brain, a story ensures that the audience cares and is motivated to take action. It also forces us to redefine professionalism, recognizing the importance of empathy when doing business with people who need us to overcome health challenges.

Best Way to Approach Patients

This redefinition of professionalism applies to all our efforts. Take video production, for example. Approaching patients and their homes in the same way as you would deal with professional actors and a film set is a recipe for disaster. You don’t want the video crew to show up at a patient’s house with a semi-trailer driving over the meticulously tended flowerbed. And you particularly don’t want interviewers to rush a patient through a story just because the storyteller doesn’t get it right during the first take.

The Role of Advocacy

Any venture into the rare, orphan and ultra-orphan disease space has to take into account the central role of advocacy. For many rare diseases, their respective advocacy groups are very tightly knit. These groups dominate the whole discourse about the disease they represent. They are usually more firmly anchored within their communities than nonprofits that engage in more common health conditions. Thus, it is essential to maintain a productive partnership with these organizations, while always bearing in mind that every organization also pursues its own agenda. That’s why co-creation is so important. Without it, companies will always have only a marginal share of voice.

The Responsibility to Advocate

In the ultra-rare disease area, where the patient population is simply too small to even have its own dedicated advocacy organization, pharma companies face a particularly high responsibility. The onus is on industry to advocate for their customers and provide services that go beyond the usual pharma marketing 101. This is where the unmet need for community is the greatest. It is also where the potential to grow the most loyal, trusting and committed customer base is the biggest.

The orphan disease market is a promised land for many life science companies as it holds significant commercial and operational promise. Having a good product alone, however, is not a sufficient proposition for people who have needs that go far beyond medication and information. Companies that view themselves as partners to the patient community and those that give those living with the disease a voice have the best chance to succeed in this space.

  • Brenda Snow

    Brenda Snow is Founder & CEO of Snow Companies. Brenda is widely regarded as the leading pioneer in patient engagement. Her full-service agency, Snow Companies, is now part of Omnicom Health Group and provides patient-focused initiatives that include Patient Ambassador programs, creative services, call center support and a growing number of patient leadership councils.


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