SEEN is a 120-page printed book that is the first publication of its kind for educating patients about bronchiectasis.

Bronchiectasis is a lung disease that is too common to be a rare disease, but too rare to have broad understanding and acceptance from patients and pulmonologists alike. As a result, patients can feel overlooked and invisible.

By putting bronchiectasis patients in the spotlight and producing a book about them, we took the disease out of the dark and helped bronchiectasis patients finally be SEEN.

In order for the SEEN book to be approved to share with bronchiectasis patients, it had to go through substantial rounds of critical review and evaluation. Insmed Incorporated has a dedicated team of medical, legal, and regulatory personnel who thoroughly evaluated all material in the SEEN book. The reviewers were specifically tasked with evaluating medical accuracy, relevancy to patient population, educational value, and any legal or compliance concerns in the piece. A single review took approximately one full week to ensure reviewers had time to read and comment on the content and updates prior to live discussions to confirm what changes were required. Prior to its release, the SEEN book went through 5 separate review cycles.

In a post-COVID world, respiratory health is at the front of everyone’s mind. This pandemic has completely changed what it means to cough in public. It has increased stigma and made those living with a respiratory condition that comes with chronic cough feel even more pressured to isolate. But unlike COVID-19 or other respiratory conditions like COPD or asthma, no one’s heard of bronchiectasis when our patients mention what’s behind their symptoms.

To make matters worse, bronchiectasis primarily affects an aging population of women who already struggle with a phenomenon called the “Invisible Woman Syndrome,” where their feelings and symptoms can feel ignored and cast aside in their life and discounted at their doctor’s appointments. Additionally, as bronchiectasis has no specific outward manifestations of the disease, its sufferers often don’t “look sick,” which contributes to these patients feeling ignored when they try to explain to family, friends, and even their doctors what they’re experiencing.

According to the US Federal Trade Commission, advertisements must be truthful, cannot be deceptive or unfair, and must be evidence-based. In addition, the Food and Drug Administration advises that disease-related advertisements/communications be disease or health condition-specific, enhance education, be clear and accurate, and contain a responsible public health message.

We created SEEN for patients, specifically people with bronchiectasis—a chronic and progressive lung disease that affects ~450,000 people in the US. It’s a widely underrecognized disease that leaves patients feeling invisible and overlooked. It was important that we created something to show patients that they are seen and understood.

Bronchiectasis affects ~450,000 people in the United States but despite its prevalence, most have not heard of it. It’s a chronic lung disease, marked by irreversible airway damage and dilation and is characterized by exacerbations, or flares. Many patients withdraw from connections and conversations that could improve their health because they feel misunderstood and unheard by their friends, family, and even treatment teams.

Our brief was to create a resource that would allow people living with bronchiectasis feel recognized for the first time, empowering them to be self-advocates in their care.

SEEN was made available to any patient who opted in to receive educational communications from Insmed about bronchiectasis. By using this platform to help patients feel more confident speaking up, we also helped build a foundation of patients who we hope now feel empowered to speak up and ask about potential new treatments in the future.

SEEN reinforced Insmed’s commitment to putting patients first. With a host of other resources and educational materials, we unveiled the SEEN book on a day when all eyes were on bronchiectasis—the 2nd annual World Bronchiectasis Day.

The impact of SEEN became apparent immediately. Within a week of launch, we received thousands of requests for the book from patients, and we depleted our 10,000-unit inventory within 12 weeks, triggering a second print run of 13,500 books. These results far exceeded our expectations and goals, and the sign-ups haven't stopped yet.

In creating SEEN, we accomplished our objective to empower people living with bronchiectasis by amplifying their voices and making them feel seen, understood, and not alone. The 4 patients we featured in the book told us this book changed their lives, and we have already heard of other patients bringing this book with them to their doctor’s appointments.