At first glance, you’d never know Lilly Stairs is sick — very sick — with chronic health conditions, psoriatic arthritis and Crohn’s Disease. She’s an energetic, driven 23-year-old Boston professional, who just nailed a brand new job in patient advocacy.
But 5 years ago, life was different for Lilly. She could barely get out of bed or dress herself without help. She struggled to eat meals. And, she was in a tremendous amount of pain. Even though Lilly is in remission today, she closely identifies with the struggles of other patients with rare and chronic diseases. And, she’s dedicated her life to advocating for them.
We first met Lilly during Rare Disease Day at the Massachusetts State House. Everything about her appeared to be healthy, but she quickly opened up to us about her personal struggles with psoriatic arthritis and Crohn’s. Then, she visited our office to share even more information, with the hope of improving the lives of future patients who need specialty drug therapies.
During her visit, she explained in detail what it’s like to live with a chronic condition that requires specialty drugs. She also discussed:
Her most troubling experience accessing therapy.
Living with uncertainty.
What the specialty drug fulfillment process is like for patients (spoiler alert: it’s not always pretty).
What she wants to see from the pharmaceutical industry.