Part 3: Creative Thinking in an Orphan-drug World
How do we best communicate about orphan drugs?
Thus far, we have explored the challenges facing rare diseases and the orphan drugs designed to treat them. Now, we come to the really big questions—who must our communications reach, what do we say, and how do we say it?
There is no textbook or primer to help us answer these questions. We have to employ a combination of common sense, logic, insight, and creativity, to name just a few of the essentials. As marketers, you may already have launched an orphan drug, or you may be in the process of bringing an orphan drug into the marketplace. No doubt, you have experiences from which we can all learn.
Rare Disease Day reminded us that there is always an opportunity to do more. It got us thinking, “What do you wish you could do in the rare disease space? What do you wish you could do differently—or could have done differently—in your personal orphan drug experience?”
At Kane & Finkel, we have worked on numerous orphan drugs in various marketing stages. Here is a bit of what we have learned over the years.
- We start by recognizing that a careful balance of science, economics, and humanitarianism is needed:
- We need a plausible science story for the KOLs and clinicians
- We need to make a real emotional connection with patients and their caregivers
- We need to address the economics of orphan drugs such that payers and national health services will support a price that is fair for both manufacturers and the concerned public
- Assessing the true value of an orphan drug—and how that value is expressed to the market—goes beyond economics:
- We look beyond a QALY or an ICER
- We consider how patients are impacted
- We evaluate other metrics of value such as prolongation of stable disease, longer time to additional treatment required, ability to partake in more activities of daily life, and the emotional satisfaction of knowing that patients are not being passed over by the healthcare system
- Value also includes the quality of a response, and not just the number of responses in a given patient population
- We exhaust a multitude of possibilities to uncover the right audience for the right targeted messages:
- Patients, caregivers, and advocacy groups rise to the top of the pyramid in terms of who needs to know about a new treatment
- Building personal relationships with physicians and other healthcare providers who treat patients with rare diseases is a real possibility because the disease prevalence is so low
- Expanding beyond traditional communications vehicles is a must in the rare disease space—leveraging new media and new channels allows for more efficient and highly targeted messaging opportunities
Orphan drugs can make an enormous difference in the lives of the millions of people who suffer from rare diseases. Kane & Finkel aims to make an important difference to the success of orphan drugs.
What has your experience been with orphan drugs? What expertise do you feel is essential to the success of an orphan drug? Please share your thoughts or give us a call and let’s talk about it.



