Forget almost everything you know about marketing a drug.
Most pharmaceutical marketing can benefit from broad, one-size-fits-all messages being delivered to giant patient populations. Treatments for breast cancer, heart disease, diabetes and most other conditions that affect hundreds of thousands (or millions) of patients each year often fit into a pretty typical commercialization “template”.
For orphan drugs used to treat rare diseases, you can pretty much throw any existing paradigm out the window.
On one hand, one of the more challenging aspects of rare disease marketing is the small patient population for a given disease/drug (fewer than 200,000 people.) So while the total number of people with rare diseases in the U.S. is very large (25-30 million or one out of ten people), that audience is spread across as many as 7,000 diseases. Relatively few rare diseases (currently mostly limited to infectious diseases, birth defects, and certain cancers) are even being tracked, so most have not even been defined, let alone diagnosed or treated.
On the other hand, despite the audience challenges I mention above, with rare diseases, we are often dealing with a highly-engaged patient population. Considering that more than 50% of rare diseases affect children (and 30% of patients die before the age of five), caregivers are much more anxious, open-minded, research-savvy and hungry for relevant, educational resources and communities than with many other more common conditions. Add the fact that for most of these diseases, there might not be a wealth of readily-available information in the usual places (WebMD, Mayo Clinic, NIH etc.)
Marketers often aspire to have a “conversation” with their audience, but in no other area of healthcare is it more critical.
Tried-and-true mass media campaigns don’t apply here. Literal (not proverbial) conversations and dialog are key. Patient communities provide comfort, education, hope and insights that caregivers and patients depend on when living with conditions that have barely been acknowledged and defined, let alone cured. (NORD – The National Organization for Rare Disorders provides organizations and resources for patients and families affected by rare diseases.)
With the Internet at our fingertips, orphan drug marketers are in a great position to create, facilitate and play an active role in the much-needed conversations among patients, caregivers and physicians.
Educating the HCPs
Again, because of the large number of unidentified disorders, physicians need help identifying symptoms and diagnosis. According to a Shire study:
- The length of time from symptom onset to an accurate diagnosis is around 4.8 years for a rare disease
- The longer it takes to diagnose a rare diseases, the more physicians the patient needs to see
- Patients see an average of 7.3 physicians before a diagnosis is made
Defining the patient journey is critical for orphan drug marketers:
- from initial symptoms
- through evaluation (usually through multiple specialists)
- online research
- patient community involvement
- and (eventual) diagnosis
The more marketers understand and articulate the complexities (and findings) along each of these points along the journey map, the better they can educate physicians to identify and make appropriate recommendations to a patient who might have a suspected rare disease.
The good news is …
Rare diseases and orphan drugs are getting a lot more attention and investment than ever before. There’s tremendous momentum in the market. Some highlights of a 2019 Fortune Business Insights report on the Orphan Drug Industry:
- The North America Orphan Drugs Market was worth US$ 67,136.0 Mn in 2017 and will continue to rise at a steady pace until 2025
- the market will exhibit a remarkable CAGR of 11.4% through 2025
- The oncology segment is witnessing considerably high demand on account of the rising number of patients suffering from different types of cancers
- The return on investment, with regards to orphan drugs, is expected to be higher than non-orphan drugs, which in turn is increasing the demand for orphan drug therapeutics worldwide
- The global orphan drugs market is anticipated to pave way for the entry of several new players in the coming years. This is mainly because of rapid drug development and discovery over the years
From the high costs of orphan drugs (25 times higher than traditional drugs), to low awareness, lack of educational resources and so few knowledgeable providers, the rare disease community faces a lot of growth challenges. But to a savvy marketer, one can only see these gaps as opportunities to truly help an underserved market of suffering patients.