Orphan drugs are few and far between. Long awaited by patients and physicians, it should be an easy job to market them. However, diagnosis comes before treatment and with more than 6,000 rare diseases prevalent in Europe alone, it is little surprise that physicians are vague on specifics.
Clinicians often have little or no concept of how diseases like sarcoidosis or systemic sclerosis present themselves and have difficulty diagnosing them. According to a 2013 JRD survey, patients with a rare condition on average see more than seven physicians before their disease is accurately determined. With an average of 4.8 years from onset of symptoms to correct diagnosis, valuable treatment time is lost and negative impact for the patients accumulates. The resulting frustrations are immense. Imagine how it must feel for both clinicians and patients to be faced with the often severe symptoms of a rare disease without evidence or guidance to help decide an appropriate treatment regimen.
Identify expertise
More than in any other indication area, medical education is one key element of a broader strategy to make orphan drugs known. As a consequence, the first step of an orphan drug marketing plan will be to identify any existing pockets of expertise – if they exist. It is even more important to know the gaps in the knowledge of your target group. Only when you understand the needs of your audience can you provide the information they require and consider valuable. Then, best clinical practice can be established in an ongoing peer-to-peer dialogue. It is important to note that in this case, one of the most important peers are patient groups. Providing the patient/carer perspective, their knowledge management and community building skills make them a partner you cannot do without.
Medical education is one key element to make orphan drugs known
Customise communication
But where does the orphan drug product manager start, when the handful of experts in his/her indication are dispersed around the globe and budget is scarce?
The solution lies in customised communication that is digital, crosslinked and multichannel. The infill team has developed a range of resources, tools and techniques that enable rare disease experts around the world to learn and work together on the basis of interactive and real-life patient case studies. These networking tools are greatly appreciated by physicians because they help improve diagnostic and disease management skills.
As another key benefit the customised content can be accessed wherever physicians or patients are located, whenever they have time. This is a strategic tool to establish best practice in orphan disease areas, where only a few experts exist, who are widely dispersed across the globe, while building brand loyalty at the same time.
A similar approach can be applied to fulfil patients’ needs. In addition to standard offerings, patient websites, use of social media channels, patient apps and ebooks are an efficient way to provide background to patients who often don’t have much credible information to rely on.
Cooperating and getting involved with already existing patient communities will help to make your sites known. Particularly when the experts who helped you at the concept stage join the social media discussions and tweet, share and recommend their favourite assets.
In short, there is a lot you can do, even if your budget does not stretch to the dimensions of traditional marketing campaigns.
Ingo Barmsen is CEO and head strategist, infill healthcare communication. Franziska Frey is senior medical writer, project lead and rare disease specialist, infill healthcare communication
