‍By. Dan Bobear

‍

During a recent planning session with my partners at MPATHIK, I began to reflect on my early career in the 1990’s working in biotech and pharma. The blockbuster era was underway: large market drugs had massive budgets, and armies of sales reps filled physician offices. National sales meetings were hyped-up events with bloated budgets and the occasional celebrity appearance. Despite the massive resources deployed to launch many of these brands, commercialization efforts often felt uninspiring and mechanical. Patients were frequently “out of sight and out of mind” and not integrated into planning beyond market research, DTC campaigns, and the occasional speaking engagement. Although upon reflection it didn’t make much sense, it was the way things were. And the good times kept rolling, so not much changed.

Over time, more specialty brands, oncology drugs, targeted therapies, and rare disease drugs began to enter the market. The landscape started to shift from mass-market categories to niche products for rare disease and other conditions. Many large therapeutic areas became saturated, and regulatory incentives for orphan disease drugs drove drug development, resulting in about half of the FDA approvals in 2023 being for rare disease drugs. While these drugs provided desperately needed therapies to underserved populations, the focus on orphan/rare disease therapies also humanized commercial approaches. Instead of seeing patients as a “TRXs” or “scripts” on a slide, company leaders became personally acquainted with families and patients navigating difficult diagnoses and life-changing situations.

One clear commercial dynamic was that traditional marketing approaches weren’t well-aligned with the needs and realities of rare disease communities. In 2012, to better align with this reality, I founded a company that worked with pharma and biotech clients to collaborate with rare disease communities to inform and recruit for clinical trials, develop strategy, and partner with clients to execute commercial launches. Although at the time such transparent collaboration was a novel approach, many in the industry have since learned that all stakeholders are much better served through proactive collaboration with patient communities, to ensure that families get what they need and that commercial goals are met.

Over the years, I’ve learned that an X factor exists, one that makes client and agency staff particularly effective in working with raredisease communities. That X factor is empathy, or the ability to share someone else's feelings or experiences by imagining what it would be like to be inthat person's situation. As our business grew, I noticed that in addition to having the necessary skill sets such as scientific knowledge, communication skills, strategic expertise, tactical prowess, and creative talent, the most successful team members were also the most empathetic team members. You would often hear them say that a certain mom wouldn’t like to be represented this way, or they would routinely put themselves in the shoes of the families and patients facing major challenges to better match our efforts with the families’ and patients’ needs. Empathy drove the team’s behavior, and it is what made our work great.The more time we spent with these families, the better we could give them what they needed and represent them in a caring and humane way. The same principle applied to our clients. When they were empathetic and spent a lot of time with families, they made better decisions and were better partners. Empathy would put us on the same page and get us aligned to do the right thing for both our families’ and clients’ business.

The challenge with empathy is that it isn’t something you can “order up.” Telling someone to “be more empathetic” won’t get you very far.While one can become more empathetic with awareness and hard work, it is a virtue that is more innate in some than others.

Here are a few hard-learned lessons from over the years that we employ in our business today:

1. Some people are more naturally empathetic than others. Staff needs to exhibit a reasonable amount of empathy with families, or they will struggle to connect and be effective. It is a difficult characteristic to screen for when hiring for our “family-forward” positions, but it is a must-have for staff.

2. Empathy inhibits scalability in a business.We often see large agencies staffing up big patient engagement teams in a short period of time. The lack of talented and empathetic staff is the rate-limiting factor that often leads to patients and families being disillusioned as they interact. It is necessary to hire slowly, form teams in a controlled and manageable way, instill cultural values, and train with intent. The quality of staff in patient engagement programs drives success, and there can’t be a“check the box” mentality or the initiatives will be subpar.

3. If our clients don’t act with a reasonable level of empathy with the families and communities, we’re not the right partner for them. This is usually self-evident right up front in the way that they talk about the business and the communities of families and patients.

4. People (clients and staff) go through personal issues and when they are dealing with those issues, their empathy spectrum may shift. Mental health challenges, personal issues, and the general demands of life can take people more into themselves and make them less available to others. It is important to realize that people vary in their ability to operate with empathy depending on what is happening in their lives, and we must be flexible and patient as people work through their personal ebbs and flows.

5. A basic level of empathy needs to exist within the agency and agency/client teams. How the teams treat each other internally is how they will treat the clients and ultimately rare disease families and communities. It is necessary to set an expectation for behavior and ensure that certain behaviors are reinforced.

As we move forward, science will continue to evolve and present even more powerful therapies, and AI will empower clinical development and commercialization in ways that we can only speculate on today. The scientific and technological advances in our industry will continue to amaze us, treat challenging conditions, and save lives. That said, it is empathy that will always be the X factor in determining the success of how companies engage with rare disease patients and communities. No matter how advanced the science and technology become, it is our humanity that will bring us together.

‍