Just a few short years ago, I had never even heard of an orphan disease. But my first encounter with a patient diagnosed with an orphan disease ultimately had a powerful impact on the way I approached my job.
In 2009, at work, I was introduced to hereditary angioedema (HAE) and a prophylactic medication for its treatment. I soon found myself swept up by the devastating facts and figures, including: random swelling attacks triggered by normal everyday activities, risk of asphyxiation due to throat attacks, missed days of school and work, and social isolation.
As the lead writer for a newly created patient program, I tried to put myself in these patients’ shoes and write copy that would reach them in what I imagined were scary, lonely lives. Part of me could relate to these patients. I was diagnosed with rheumatoid arthritis at age 17 and have been injecting myself with a biologic medication for more than 10 years. I know what it’s like to live with a chronic disease.
But HAE was different. For some, it is truly a life-or-death situation.
The first HAE patient I met was a sweet, pretty 16-year-old girl with a megawatt smile and a bright future. As we sat in a conference room talking about her college plans, the reality of her past slowly dawned on me. She had been sick. Very sick. She spent her childhood hiding swollen hands and excruciating stomach pain from her classmates.
And then I realized something else: Her life was different because of an orphan drug. In fact, her life was better because of an orphan drug.
Her doctor had the information and the necessary access for making the critical decision to prescribe the orphan drug and for teaching her how to infuse herself. And now, instead of skipping sleepovers and hiding under a hoodie, she could live as a normal person.
This one-hour meeting changed me as a person and as a writer. There I was, trying to write copy that would give hope and compassion to HAE patients and personify their collective voice. What I didn’t realize at the time was that I lacked the human perspective. One conversation with a real patient—followed by many more conversations with more patients—helped me see how important our work can be in the eyes of patients.
There are countless ways to measure success in our industry. But since I have seen the very real benefits these types of drugs have provided patients, I keep my heart focused on a bigger reason, one that doesn’t always get enough attention. Maybe, just maybe, a doctor will read the headline in a journal ad, or see a graph in a detail aid, or scroll through an infographic on a microsite, and it will light a spark. And someone’s life will change.
Kristin Morris is associate creative director of copy at Dudnyk.