As someone who has spent my entire career advocating for patients, I’ve come to recognize the profound impact that hubs can have on the patient journey, especially in the realm of specialty therapies. My connection to this work isn’t just professional; it’s deeply personal. From a young age, I experienced firsthand the struggles families face when navigating the complexities of the healthcare system, particularly when dealing with a rare disease like Duchenne muscular dystrophy, which my younger brother was diagnosed with when I was 14.
Growing up as the eldest of ten children, with parents who worked long hours—my mother as a waitress and my father as a mechanic—I became my brother's advocate. It was up to me to ensure he received the care he needed, knowing he would likely lose the ability to walk by the age of nine. The challenges my family faced in securing treatment, understanding insurance policies, resources, patient advocacy organizations, and accessing affordable medication and treatment became the driving force behind my life’s work.
This personal journey led me to a career where I could channel my passion into advocating for other patients. I started in a retail pharmacy, then moved on to a military treatment facility, and later to the University of Virginia Health System. These roles gave me a comprehensive understanding of the healthcare landscape from multiple perspectives. I worked with patients who took three buses and trains to get affordable treatment, started infusions for the first time, and grappled with Medicare Part D, seeing up close and personal the direct impact of the system’s shortcomings on patient and their families.
But it wasn’t enough to just understand the system; I wanted to help find a way to change it. That’s why the National Association of Medication Access and Patient Advocacy and the Healthcare Advocate Summit were founded. These platforms bring together the patient advocacy community, healthcare professionals, and industry leaders to collaborate on the challenges we all face. Over the past four years, the Healthcare Advocate Summit has grown into a crucial forum with over 900+ participants, representing most of the major market access teams and hubs. This growth speaks to the urgent need for shared knowledge and resources to address the hurdles that stand between patients and their therapies.
One of the most significant lessons I’ve learned is the critical role that hubs play in the specialty therapy journey. Over the course of my career, manufacturers have sought out my expertise to assist with the launch of over 30 different specialty products (including oral, injected, and infused drugs) and to help shape their patient services programs. In working with numerous hubs, I’ve seen firsthand how they can either alleviate or exacerbate the challenges patients and those who support them face.
I had the opportunity to take on a role and join a pharmaceutical company for their launch of a specialty drug for Duchenne muscular dystrophy—a rare orphan disease that has touched my life and now my career. It was in this role supporting our market access and patient services initiatives that I truly saw the transformative power of a well-functioning hub: They can make or break a patient's ability to start and stay on their medication.
The most effective hubs I have worked with while supporting multiple specialty therapies in my role at University of Virginia Health System, like CareMetx, stay current on the complex and ever-changing challenges that patients and their advocates face in accessing specialty therapies. Insurance policies shift, copay programs evolve, and new regulations come into play, creating a confusing landscape for patients. A hub’s ability to stay informed and provide up-to-date information is crucial. Hubs need to continuously train their staff, stay at the forefront of industry developments, and proactively seek out new resources to help patients.
In addition to staying informed, hubs must also remain flexible and empathetic. Patients dealing with rare diseases are often under tremendous stress, balancing the demands of their treatment with daily life. A hub that meets patients where they are—whether that means communicating in their preferred language, finding alternative ways to reach them, or simply offering a consistent and caring presence—can make all the difference in the patient’s experience.
This work is not easy. It requires dedication, attention to detail, and a genuine concern for the well-being of each patient. But when done right, the impact is profound. Hubs have the power to transform the patient experience, ensuring that patients can start and stay on their therapies and get the support they need to navigate the journey ahead.
In reflecting on my own path—from a family advocate to an industry veteran—I see the vital role that hubs play in bridging the gap between patients and the therapies that can change their lives. It’s not just about medication; it’s about providing strength, support, and hope in an otherwise uncertain journey.
For those looking to understand more about how hubs can improve the patient experience, I invite you to explore further insights from our organizations’ work and the collaborative efforts we've undertaken through the National Association of Medication Access and Patient Advocacy and the Healthcare Advocate Summit.