Having had the unique opportunity to work within one rare disease over the course of a decade has provided me, and my colleagues at Dudnyk, with many incredible learning experiences, humbling interactions, and leaps in personal and professional growth.
It is not often that an agency has the opportunity to promote a first-in-class FDA-approved treatment for a rare disease, much less champion that treatment throughout its entire lifecycle, and ultimately, take on the role of brand steward for an entire portfolio of products in the same rare space. Yet, this has been our incredible journey in hereditary angioedema (HAE)—a journey filled with experiences that have helped shaped the future of our agency, as well as the future of treatment for this deserving community.
As a young(er) senior account executive on my first rare disease brand, I vividly remember the day I was asked to take on Cinryze, a ground-breaking treatment for HAE, and Googling the terms “orphan product” and “rare disease.” Having just come from an agency that was much more HCP focused in larger disease populations (allergy, vaccines, women’s health), I knew immediately that this experience was going to be very different. I was both nervous and excited for the chance to champion such an important brand for such an underserved community of patients. It was a turning point for my career and for our agency. We were just in the early stages of establishing a focus on rare disease brands. We knew the opportunity that lay before us was special, but we still didn’t know quite how transformative it would be.
HAE is a debilitating and life-threatening hereditary condition that causes localized swelling attacks in the face, larynx, stomach, genitals, and extremities. These attacks can occur at any time and last for days, resulting in a heavy disease burden for patients marked by fear and anxiety of never knowing when the next attack will occur. Because of the unpredictable nature of the disease, patients deal with many limitations in their lives and in turn require a large amount of medical attention and ongoing management and support.
Due to the small population of patients with HAE (1 in 10,000 to 1 in 50,000 worldwide), the awareness level among allergists and immunologists was extremely low at launch. Time to diagnosis from onset of symptoms ranged from 10-25 years, and many patients struggled through innumerable hospital visits, misdiagnoses, unnecessary operations, and even mis-labeling as drug-seekers and hypochondriacs. It is also unfortunate that many patients have died from complications of HAE, often as a result of misdiagnosis and lack of proper treatment.
Our first assignment for Cinryze was as the patient agency of record (AOR), which offered us the incredible opportunity to get to know many people living with HAE. Being able to spend time with and hear these patients’ stories made everything we did as an agency more meaningful and fulfilling. We heard firsthand of their personal trials and triumphs, their individual journeys to diagnosis, how treatment completely changed their lives, and how grateful they were to companies involved in serving their community. It was truly one of the most rewarding and inspiring experiences of my career, and it ultimately set Dudnyk on a path to focus on orphan and specialty brands and the physicians and patients that benefit from them. Through this relationship with the patients, we took a revolutionary approach to crafting a patient program that would not only serve basic access and educational needs, but truly help patients rise above the burden of their disease and feel supported, informed, and empowered at each stage of their journey.
As Cinryze made its initial impact on the market, it quickly became apparent that more HCP education was needed to not only help diagnose patients, but also help HCPs understand the toll HAE took on patients’ lives. Soon after launch, when we were also awarded the HCP AOR business, our team immediately began to focus on disease awareness and market-shaping work that would do just that. Our efforts to help physicians see the emotional and psychological impact of HAE was unprecedented at the time. Disease awareness campaigns were not common in those days, and we were grateful for our client’s courage in sharing a bold and truthful message with an audience that perhaps didn’t think they needed to hear it. And that risk paid off—the campaign won multiple awards and recognition for the agency and helped to pave the way for a different type of marketing that has become ubiquitous in the rare disease space today.
Addressing Patients’ Emotional Burden
As is the case with many rare conditions, HCPs often do not see many HAE patients in their practices, and when they do, they don’t talk to their patients about quality-of-life issues, nor do they appreciate the emotional weight carried by these patients. Often, physicians would evaluate disease severity through clinical measures only. How many attacks has the patient had? How many times has the patient visited the ER? Through our disease education efforts, we helped them see that the impact of the disease extended far beyond the physical attacks. Through strong storytelling and emotional depictions of the true patient experience, we were able to shift the mindset from a reactive one to a proactive, preventative approach.
One of my proudest moments occurred during market research when I listened to physicians change their attitudes during single, one-hour interviews. These specialists realized they had an obligation to think differently about prevention and that the burden of disease was about much more than just number of attacks. I remember one allergist saying, “I can do better for my patients; we need to move beyond what we traditionally do. Even though we, as physicians, don’t see that many of these patients, they deserve better care.”
In the years following, we were fortunate to see diagnosis rates increase, time to diagnosis decrease, more patients gain access to treatment, and more attention, awareness, and product innovation in this rare disease space. The evolution of social media created a new and exciting way for HAE patients and families to find and interact with each other, share their stories, and offer up suggestions and personal approaches to their own treatment methods—bringing about a shift in the way people connect and find community in rare disease, rather than hiding in shame about it.
Improving Access and Quality of Life
When Cinryze was acquired by Shire, Dudnyk went with it. Our experience and passion for the HAE community allowed us to retain our role as the Cinryze brand champions, and soon we were also awarded AOR status for additional HAE treatments, Firazyr and Kalbitor. As more and more treatments came to market over the next couple of years, it remained imperative for our team and the brand marketing teams to stay focused on the mission to improve patient quality of life and ensure access to the treatment and resources that patients desperately needed.
Through this time, we helped patients become more empowered and more educated—advocating for better care for themselves and their families. We watched patients participate in emotional FDA approval hearings and form online groups; we saw the development of patient public service announcements and organized petitions; we ran in advocacy group 5Ks and participated in community fundraisers; we witnessed a paradigm shift toward preventative treatment; and ultimately, we saw the evolution of this rare disease from one of isolation and depression to one of advocacy, support, and encouragement to live life without limitations.
As treatments only continue to advance and drastically improve, my colleagues and I look forward to a day when HAE is no longer the devastating diagnosis it once was and instead becomes only a minor part of who a person is—not something that completely overtakes their life.
I consider myself incredibly fortunate to have spent the last 10 years working exclusively in rare disease. My experience in HAE was only the beginning. I’ve now led efforts in other rare, and even ultra-rare, disease states, and our agency has grown its rare disease roster to more than 80% of its overall business. It is such a wonderful feeling to get to work for these communities of HCPs and patients who start out with precious few answers, and to be able to be part of delivering solutions that can be completely lifechanging for providers and families. The passion we all have for working in this space is evident in every brand we promote and is the reason so many of us have found a home at Dudnyk. And, with more than 7,000 rare diseases worldwide, and hundreds of millions of rare disease patients who need our enthusiasm and expertise, I feel we’re just getting started.