The first time I met a person with a rare disease, I was young, less experienced, and completely unprepared for how the interaction would shape my perspective and ultimately lay the foundation for a career that would challenge and inspire me.
Dudnyk was developing support materials for people with hereditary angioedema (HAE), and we were seeking the opinions of a few of the patients. I expected the meeting would be similar to the market research we conduct with physicians. We would simply lay out the materials, ask the person’s opinion, and make changes based on their feedback. One of the people we spoke with was 16 and living with a rare genetic disorder that caused random swelling attacks that almost killed her.
She didn’t just offer her opinion on our materials. She told us her story. We learned about how she was rushed to the hospital at 12 years old when her throat started to close and her mom didn’t know what was happening. We listened to her fight back tears when she recounted the number of sleepovers she skipped because she was too afraid of having an attack in the middle of the night. We saw the residual shame in her eyes when she described the way she wore hooded sweatshirts in the dead of summer to hide the unnaturally muscular arms that were a side effect of anabolic steroids, the only medication approved to treat HAE at the time.
Her story broke my heart, but it also woke me up. I was no longer just a writer performing the duties of her job. I was an ally in the private war this girl was fighting, and I realized I could play a tiny part in her battle by arming her and physicians who treat people like her with the information that could change the lives of people suffering with this disease.
It’s no surprise I ended up in a career that allowed me to combine my love for writing and my fascination with human stories. At my 5th grade graduation, my teacher predicted that I’d be a children’s book author when I grew up. At the end of my 6th grade year, I was given the “Can We Talk?” superlative by my teachers based on my habit of walking into their classrooms and asking personal questions about how their lives were going. I’ve always found deep gratification in discovering the quirks of each human life and uncovering the connections between them. I consider it a privilege to bear witness to the joys and struggles of the people around me.
When people ask me what I love most about my job, my answer is always the same: the patients. Over the years, my interactions with patients have taught me so much about what is truly important and about how to be a better marketer.
Here are a few of those discoveries:
1. Patients need our help to tell their stories.
In our society, a weak body is akin to a weak character. We see someone in a wheelchair and look away, or we stiffen when a child with deformities brushes against us in the grocery store aisle. We are conditioned to think that granting compassion will somehow cause us to absorb the burden of those who are sick and suffering. And so, many patients suffer in silence. They mask their symptoms so their partners don’t have to spend yet another day tending to them. They hide their diagnoses from their bosses to avoid the risk of losing their jobs.
I once attended an advisory board for people who were living with acromegaly, a hormonal disorder that can cause enlargement of the feet, hands, and face. One woman, a therapist, was desperate to share her story in an effort to increase awareness, but would only appear on camera if her face was hidden. She was too afraid that her clients, even longtime loyalists, would desert her if they knew she was diagnosed with a rare disease.
The greatest gift we can give these patients is not just a promise of what our products can do for them, but a platform from which to share their stories. When we build brands that are rooted in authentic patient experiences, we have the power to give a voice to those who are screaming for people to listen. We give them credibility to educate their families and even their physicians, and validation for the way their disease has impacted their lives.
2. Reading about a disease is not the same as witnessing its impact.
Anyone has the ability to read an article in a medical journal, extract data, and translate that information into promotional messages. We can learn the symptoms and build a diagnostic pathway. We can look at case studies and convey the prognosis. But these patients deserve more than facts on a page. They deserve a story with depth and meaning that can only come from first-hand interaction.
We are currently lucky to be working to bring a first-in-class medication to market for patients living with hereditary ATTR amyloidosis, a rare disease that causes progressive nerve damage and heart failure and can result in premature death in as little as 2.5 years after symptoms begin. It is a devastating condition, particularly for the patients who know it runs in their family and have seen the toll it’s taken on their loved ones.
Prior to building the campaign and web site, we had the opportunity to spend time with a family living with hATTR amyloidosis. Each family member lived in different parts of the country, and we were able to bring them all together. They hadn’t seen one another in a couple of years, but the palpable love and nonstop banter between them made it obvious they were a strong support system for each other, even from a distance. They cracked jokes, played pranks, and shared stories of a happy life together. But in the quiet moments, the physical and emotional burden of their disease was evident. One of the family members couldn’t open her eyes outside because the ocular damage she had suffered from the disease had left her eyes highly sensitive to light. During a video shoot, a father of 5 talked about his fear of what will happen to his wife and children once the disease starts to rob him of function. I sat behind the camera fighting back tears.
My time with this family gave me new appreciation for the burden of hATTR amyloidosis and had a direct impact on the way we shaped the campaign. It also reminded me of the incredible opportunity to help bring this new therapy to market and hopefully transform the lives of these patients.
3. Our work for these patients has only just begun.
For people living with rare diseases, they are simply grateful for the treatment options they have (if they have them). They remember a time when doctors knew nothing about their conditions and when they had no treatment options at all. They know that in order to take advantage of clinical benefits, they may have to put up with frustrating side effects or inconvenient administration. And so they count their blessings – and count on us to keep innovating.
Once during a photo shoot, I met a rare disease patient who was on the only preventative therapy approved for her condition, a twice-weekly IV infusion. After years of taking this therapy, she required a port to access her collapsing veins. She was 19 and in her first year of college. Years later, this disease community is awaiting the approval of a once-monthly subcutaneous injection. I can’t help but reflect on how far therapeutic advances have come for these patients, and the difference treatments like this will make in their lives.
Every orphan drug approval is a victory for our patients. We celebrate with them – and then we turn our eyes toward the future. With gene therapy and other exciting developments soon becoming a reality, there will be even more stories to hear, more people to help, and more reasons to get up and come to the office every morning.
Over the years, I’ve had the opportunity to bring incredible products to market through powerful creative campaigns. I’ve worked to unify the patient and physician perspective so that people who are living with these devastating diseases have a fighting chance at finding a treatment that can give them hope. My interactions with real patients has given me both professional and personal fulfillment beyond what I could have imagined during my first conversation with an HAE patient all those years ago.