![]() Pharm Exec: What challenges is the specialty medication market facing?įlesch: 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. 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. 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. Expectations from both regulatory bodies like FDA and the patients themselves are also driving this model. ![]() Pharm Exec: What factors are driving pharma toward a patient-centric approach?įlesch: A main driver for a patient-centric approach is that engaging patients is the right thing to do. 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. 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.Īt 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. Over time, by talking to doctors, volunteering at advocacy events, and meeting with other families, we became experts. My family felt isolated, and our only option was to find answers and information from our doctor or the public library. 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. 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. 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. The future solutions and resources critical to our businesses and the patients we serve are informed by these discussions and meaningful conversations. 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. 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. 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. Pharm Exec: When it comes to a patient-centric approach, what does the future of pharma look like?įlesch: Meeting people’s needsis the business of this industry, so being patient-centric is the foundation of everything we do. ![]() Here, he speaks with Pharm Exec about his work to bring a patient-centric approach to the forefront of the industry. 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. Getting diagnosed with a serious illness is stressful and incredibly scary.
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