Finding your market in rare disease

In the world of “traditional” pharma we are used to thinking about finding our market via market segmentation and targeting. When we have a new drug for diabetes, or reflux, or hypertension, it isn’t hard to find patients. Rather, there are so many patients we have to prioritize. We have to figure out which of the millions of patients could be taking our new drug. We can easily find lists of patients on competitor drugs, or doctors who prescribe frequently, and then target those populations.

But in the world of rare disease and orphan drugs life is a little bit more complicated. Many of the tools that we take for granted in the world of diabetes are unavailable to us in rare disease.  When only 200 people in the country have the disease, the question isn’t “which of the patients should we choose?” It is “how do we find as many patients as possible?” We know that the disease is so rare, and might be so hard to diagnose, that there are others out there suffering. They don’t know what is wrong. They don’t know there is a drug that might help them. How do we find these undiagnosed patients? How do we – quite literally – find our market?

To find these patients, companies are using direct-to-consumer marketing and they are advertising via social media. But why not use the available data capturing patients’ journeys through the health care system? At Vencore Health, we are doing exactly that. We can analyze petabytes of data to look for patterns that indicate a patient might have a particular rare disease. We recently conducted a study for a client who wanted to find patients with an ultra-rare disease. We provided a list of about 50 patients we thought might have the disease. They have already confirmed that 12 of them do indeed have that disease. (For the record, everything we do is 100% HIPAA-compliant.) We can also look at addressable market, and define patient journeys. We are helping clients find patients who can benefit from their drug. We are helping them find their market.

Tara Grabowsky, MD
Chief Medical Officer