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8 Things to Know About Rare Disease Marketing

Intouch Team

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Seemingly out of nowhere, rare disease marketing has become the rage across the pharmaceutical landscape over the last few years. How and why did this happen? And if you step into rare disease marketing, what are the key best practices? Here are some answers:

1. Why now?

Pharma companies are seeking new sources of revenue as sales of mass-market drugs have been lost to generic competition. Growth of rare diseases is set to double that of the overall prescription market according to one study (7.4% a year for rare diseases vs. 3.7% for all Rx’s). And most importantly, rare diseases offer more return on investment than non-rare (10.3x ROI for rare vs. 6x ROI for non rare).

2. Is supportive government involvement helping to drive growth?

Yes — absolutely! In the U.S., the Affordable Care Act makes ultra niche drugs commercially possible by increasing the number of people covered by insurance. And this recent legislation builds on earlier action that paved the way for Rx development in this category. The Orphan Drug Act of 1983 financially incentivized companies to develop rare disease Rx’s. And the success of this original act has been adopted in many key global markets including Japan in 1993 and the European Union in 2000.

3. Where to start?

Invest the time to know about your specific disease state community. There’s no substitute for gaining firsthand knowledge of rare disease patients: How do they think? What do they feel? How do they behave online? What are they looking for? What’s their demographic profile? Are there any geographic or other key composition factors? Listen and pay particular attention to any unmet needs.

4. Realize that rare disease patients are very proactive information seekers.

This type of patient — along with their caregivers and close friends — break the traditional paradigm of layperson medical education. Their appetite for information is voracious. They often jump to the technical medical explanations — crossing into the HCP sections of product and disease state sites — due to lack of information found in other resources. They crave every nugget of information, because so little may be available. For the rare disease communities you must find these gaps in information and look for ways to fill them.

5. Throw away your big pharma marketing playbook.

It simply won’t work the same way in this market. Finding, diagnosing and servicing patients requires a targeted approach. Even the role of the sales force is different in this concentrated community because the teams are far smaller and less scripted. However, this concentrated audience provides marketers more opportunities to build stronger bonds with key opinion leaders — and even patients.

6. Look for meaningful ways to support the disease community.

Advocacy groups are often a place where patients and their supporters go for information, support and a "sense of belonging." Close ties to these groups can go a long way towards establishing trust and building bridges to longer term product marketing. In addition, these groups are under-funded compared to their big-category counterparts, and are often more open and receptive to partnering with commercial organizations. Look for ways to go beyond just "writing a check" through more creative, win-win collaborations.

7. Bundled patient support services are essential.

Rare disease patients often have concerns about prescription medication costs, severity of side effects and a wide variety of other challenges they face. Offering care coordinators who serve as point persons for important support services can alleviate many of these concerns. The services can include direct assistance with insurance reimbursement, answering questions about the drug — and even arranging home visits to show patients how to properly administer the drug.

8. Don’t stop listening and learning.

The market and the patient mindset can, and will, change. You need to stay on top of it. Devise ways for patient and doctor feedback on your initiatives. What worked in your first stage of marketing may or may not keep working if you are out of touch with the community or if a competitor enters the market. So keep connected.

These are just some of the things we’ve learned at Intouch when marketing to rare disease communities. But we’ve also learned that every disease is different. And although we have developed some best practices and guidelines that exist across marketing to these conditions, the real challenge is to fully know and understand the particular disease state better than anyone else.


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