At 19, she had 2 serious autoimmune diseases. Now, she fights for others

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Patient advocate Lilly Stairs

Six years ago, after an onslaught of testing and doctor visits, I was diagnosed with psoriatic arthritis, an autoimmune disease that resulted in total body arthritis and paralyzing pain that made even the slightest movement excruciating. The diagnosis turned my life upside down. Every day was a battle against my joints, fatigue, and my self-confidence.

Five months after my diagnosis, even drinking water was unbearable. I was in and out of the E.R. three times in one weekend.  While many of the doctors were convinced it was all in my head (even though I was on 90 milligrams of morphine that didn’t come close to taking away the pain), a camera study proved otherwise when bleeding ulcers were discovered in my small intestine.  I was diagnosed with yet another autoimmune disorder: Crohn’s disease.

At 19, I had received back-to-back diagnoses of serious chronic illnesses. I endured countless failed treatments, debilitating fatigue, strained relationships, and experienced more pain than I could have ever imagined.

I often felt powerless. But one thought kept me empowered: The notion that I might one day help change the healthcare landscape for other patients. From the time I was in the hospital bed, I knew that this would become my life’s mission, my reason for being. I had to find a way to advocate for autoimmune patients, so that someday, no one would have to undergo the pain and suffering myself and my loved ones endured.

My journey as a patient empowered me to launch a career in patient advocacy. Through my work I have become passionate about doing anything and everything I can to help make patients’ lives easier through digital health. In an age where we can order a taxi or groceries with a press of a button and swipe right to find the love of our lives, it is remarkable that healthcare has trailed so far behind.

And there is one area in particular that we desperately need a digital solution for: clinical trials. Clinical trials are the lifeblood of medical innovation, and they can’t happen without patients. In fact, it is other patients who saved my life. Because of the brave patients that took part in clinical trials, the biologic therapy that has kept me in medically controlled remission for four years was approved by the FDA.

But I am one of the lucky ones. There are countless patients desperately waiting for a new treatment. Unfortunately, with millions of patients needed to fill clinical trials around the world and 80 percent of these trials falling behind (or worse, halting) because they fail to enroll patients, those breakthrough treatments are not getting into the the hands of patients who need them most.

The system is broken. In addition to archaic trial finders, unresponsive site coordinators, and lack of support for patients considering trials, there is an alarming lack of awareness about clinical trials among patients, providers and the general public. But I am confident this will soon change. We’ve started to see a major paradigm shift in healthcare. In the age of Google, health trackers, and social media, patients are taking health into their own hands. They are doing their own research and pushing back against the status quo.

Ultimately, it’s patients who hold the power. It is essential that we arm them with the knowledge they need to make informed decisions about their health and treatment plan. To support patients like me now and in the future, clinical trials must be a part of the narrative.

Lilly Stairs is the Head of Patient Advocacy at Clara Health, a company working to connect patients to clinical trials and support them throughout the process, where she is responsible for conceiving and executing patient engagement strategy and ensuring the patient voice remains firmly at the center of the company. A Boston resident, she is a board member for the American Autoimmune Related Diseases Association (AARDA) and also works closely with notable healthcare and biotech companies to ensure their initiatives remain patient-centric. This column appears through  our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for more than one million patients and caregivers.

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