Getting diagnosed with a serious illness is stressful and incredibly scary. Matt Flesch, vice president of communications and patient advocacy at Horizon Therapeutics, is working to make sure that patients and their families not only receive the proper care, but the necessary knowledge and information when faced with treatment choices. Here, he speaks with Pharm Exec about his work to bring a patient-centric approach to the forefront of the industry.
Pharm Exec: When it comes to a patient-centric approach, what does the future of pharma look like?
Flesch: Meeting people’s needsis the business of this industry, so being patient-centric is the foundation of everything we do. Increasingly, our industry is embracing the fact that the person living with the disease—and often their family—are the experts, and that we need to engage early and often. Taking this approach means listening first with the goal of learning and understanding the challenges that people face in the communities of patients we serve. They live with the disease every day, and when we engage advocacy group leaders, we’re talking with people who are constantly engaging with other people impacted with the disease, and the healthcare professionals who address their condition and comorbid conditions. The future solutions and resources critical to our businesses and the patients we serve are informed by these discussions and meaningful conversations.
Long before I began my professional career, I unknowingly started down a path in rare disease advocacy, and I saw firsthand the way the patient and their family become experts. When I was 15 years old, my family learned my younger brother had focal segmental glomerulosclerosis (FSGS), a rare disease that affects the kidney’s ability to eliminate waste. Given the time of his diagnosis—before the internet was widely used and rare disease families became better connected—the resources and conversations surrounding FSGS were limited. My family felt isolated, and our only option was to find answers and information from our doctor or the public library. Over time, by talking to doctors, volunteering at advocacy events, and meeting with other families, we became experts. As an industry, it makes no sense to not engage people with this type of experience the same way you would engage a physician KOL.
At Horizon Therapeutics, we have learned over the years that the most impactful programs and initiatives are born out of the true experience of those living with the disease and their family. We strive to always listen to patient advocates—from large nonprofits to small groups of volunteers working nights and weekends—and share these insights back in our organization and throughout the rare disease community.
Pharm Exec: What factors are driving pharma toward a patient-centric approach?
Flesch: A main driver for a patient-centric approach is that engaging patients is the right thing to do. Expectations from both regulatory bodies like FDA and the patients themselves are also driving this model. Through a business lens, engaging patient groups is foundationally crucial to success, as it informs us about potential unmet needs that could in turn influence future therapeutics. As the industry grapples with the impacts of the COVID-19 pandemic, and the amplified isolation that many patients with rare or chronic disease felt, a broader implementation of patient engagement and outreach to communities should be especially threaded through everything we do.
Pharm Exec: What challenges is the specialty medication market facing?
Flesch: In my role leading our patient advocacy team at Horizon, our efforts are agnostic of our medicines, but we do often hear from patient communities, particularly those in the rare disease space, about challenges with access to care. These challenges range from getting a diagnosis, to identifying and connecting with the appropriate specialist, to accessing therapeutic options. One of our core beliefs is that the more engaged a person is around their disease, the better chance they will have at getting the best possible care. With that in mind, we support patient advocacy group efforts to educate people living with a disease and their caregivers on how to advocate for themselves. When it comes to access challenges, the strongest voice in the room is often the patient.
Pharm Exec: In what ways can companies go even further in using a patient-centric approach to help patients?
Flesch: Looking into the near future, I hope we carry the collective empathy and wisdom gained from the COVID pandemic and incorporate the tools that connected us as a new piece of the puzzle, as well as embrace the shifts that allowed us to adapt to a crisis and continue to connect with the patient communities we serve.
For us, this connection between our teams and the patient communities is the driving force behind how we do things differently. We think differently about how to better educate and engage communities, learn from them, and then create those programs and initiatives. An example of this is Horizon’s recently launched #RAREis Global Advocate Grant that financially supports 30 patient advocacy groups and their missions worldwide which connect people and move research, education, and awareness forward.
From a personal perspective, things have changed tremendously for patients, families, and caregivers of those with rare diseases since 1989, when my brother was diagnosed and our family was seeking support. There was very little out there in the way of research, community, or support. There is a tremendous amount of momentum happening now in patient advocacy, and we need to continue to evolve to collaborate with patient communities and incorporate their expert voice the same way we collaborate with physician communities.