Rare disease healthcare marketing: Current view

In rare disease especially, targeting everyone actually targets no one. At Evoke Giant, we know more than just patients’ disease status. We know their names. We know their families. We tell their stories.

There is Andrea, 34, from Chicago, Illinois, living with Gaucher disease, and Carley, 19, from Boulder, Colorado, who isn’t defined by her Ewing’s sarcoma.

We also know their paths to diagnosis. More often than not, the journey has been long, winding, and arduous. Dozens of specialists, decades of uncertainty, day upon day of physical and emotional suffering.

Then there are the barriers to treatment: lack of FDA-approved options, doctors unfamiliar with any options that may exist, complicated referral infrastructures, even more complicated insurance protocols, financial hardship, and insufficient support.

Achieving this level of intimacy with individual patients may be difficult, but it is also one of the most rewarding aspects of working in the rare disease space. It is highly plausible for pharma companies to have direct relationships with all of their patients. Ideally, that should be the goal.

We believe the key to success in healthcare marketing is relationship building. This is especially the case for rare diseases. In our last post on this topic, we looked at the history of healthcare marketing to rare disease communities. Today, we consider the current challenges of defining and finding a key patient population.

Re-paving the path to diagnosis

Thanks to rapid advances in diagnostic technology, especially in the genomics sector, we are better poised than ever before to clear the first and biggest hurdle: finding patients. In many ways, improved diagnostics have made the rare diseases market possible. More affordable genetic testing, research into targeted therapies, and increased adoption of precision medicine have significantly improved a patient’s chance of having his or her disease identified sooner.

Pharmaceutical companies can enhance this even further by providing diagnostic tools to identify patients who might be future consumers of their products. This is one-way rare diseases are changing the focus of healthcare marketing: it’s less about pushing out messages than about pulling in patients.

When there is only one therapy available to treat a disease, successful marketing is less about drug promotion than raising disease state awareness — a key is useless if no one knows what it unlocks. This involves educating not only potential patients, but also physicians who may see precious few cases of the disease.

Messages that resonate and are “sticky” are more likely to be recalled by a healthcare professional when a patient presents with uncommon, but telltale symptoms. Likewise, patients armed with potential answers are much more empowered to advocate for their health.

Make it personal by engaging directly with patients and sharing their stories. Make it communal by conveying the value of prompt and appropriate clinical care. Patients without the skills to manage their health care incur costs up to 21% higher than patients who are highly engaged.

Rare diseases matter, and we are in a position to make a real impact.

Interested in learning more? Connect with us at www.evokegiant.com.