On the morning of March 17, 2020, I arrived in Boston having just returned from skiing in Calgary, Canada. Knowing COVID was advancing at epidemic levels throughout the country, I felt like I had no choice but to get on a plane and come home.  Before leaving, my wife and I had secured a couple N95 masks.

“Should I wear one when I come pick you up?” she asked.

“No,” I said. “The CDC says they’re not needed by anyone outside hospitals.”

When we arrived home, I dumped all of my clothes on the driveway, not knowing if the virus could cling to surfaces. During my two week quarantine (which turned into 4 weeks isolation), I developed moderate respiratory distress which got worse at night—a lot like being at high altitude, later followed by a deep, rasping cough and lost sense of smell. I later learned two of the skiers in my people in my group were diagnosed with COVID.  I’ll never know if I had the virus or not, as there were no tests available for people with potentially mild-to-moderate cases at the time.  I feel lucky to have survived.

Disease Environments Constantly Evolve

The point of this story is to demonstrate how radically our understanding of diseases can change. There was so much we didn’t know. From learning about the importance of masking everyone, to proving that it’s very unlikely the virus can survive on surfaces, even accelerating the development of widespread, accurate testing, therapeutics, and vaccines within months, our society’s response to COVID was powered by unprecedented advances in scientific knowledge. To this day, the urgency to educate around COVID is active and ongoing—and critical to the world’s recovery and progress.

Your disease environment is evolving, too. And this evolution provides you and your organization the opportunity to actively educate around new understanding of severity, diagnostic advances, pathology, mechanism, and other critical aspects of conditions that have been brought to light by your pioneering science. It’s not just important for your organization, but important for your audiences, including key opinion leaders, community physicians, advocacy groups, and patients and families, to access relevant, actionable information that can impact their approach to management—even if it’s years before the potential launch of your product.

Why Invest in Shaping Disease?

Your product likely represents a critical advance in patient care; however, if the disease environment is misunderstood, undervalued, or underappreciated, your clinical trials could suffer from endpoint misperception, lack of urgency around recruitment, even your company’s enterprise value could suffer.

Our decades of experience in disease shaping can help inform your approach, and our proprietary products can help uncover hidden perceptions that exist in your disease environment, helping you better understand your markets, leading you to make more informed decisions.

What Factors Influence Your Disease Environment?

In our experience, one of the first (and sometimes not obvious) places to start is in the name of the condition itself. When was it named?  And in what context?  Diseases may have what we refer to as “vestigial” names that they received in the mid-1900s when they were discovered. Sometimes even earlier!  And these names can drive perceptions that are at best outdated, and at worst, can actively convey false information that negatively impact diagnosis and patient care.

In the case of a life-threatening clonal condition such as paroxysmal nocturnal hemoglobinuria, (PNH), research revealed that the condition is not paroxysmal (it happens all the time), not nocturnal (its pathology occurs during daylight hours), and hemoglobinuria only manifests in approximately 26% of patients. While the condition has not been renamed, its understanding has evolved and the approach to treatment has become much more activated and urgent.

In other environments, our clients have actively embarked on working together with the treatment community to change the name of a condition that was stigmatizing to patients (from “cirrhosis” to “cholangitis”), as well as made choices to select a disease name patients used versus a name clinicians were more comfortable with for strategic reasons around community outreach. These choices were deeply considered, important long-term investments, and drove critical realignments around disease management, helping drive successful product uptake, but also dramatically improved awareness and care.

Other factors that can impact disease environment include:

How We Can Help

Even if your product is years from launch, understanding and engaging in your disease environment carries critical implications for product development, including clinical trial design, audience outreach, and enterprise value.

Our experience in disease shaping, as well as our suit of proprietary market intelligence tools, can help you uncover current perception and sentiment in your environment, and point towards potential decisions that can impact your precommercial approach.

Each disease environment includes unique, individual challenges. You can understand them, and take action.

Contact us to learn more about our approach and how we can collaborate together.


Leave a Reply