“My Battle With IBD Has Fueled My Passion for Helping Patients Like Me”
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Twenty years ago, I was living in Boston and wrapping up my college studies in computer science when I was struck by a constellation of uncomfortable and alarming symptoms. I knew that frequent bouts of abdominal pain, diarrhea and bleeding weren’t normal so I sought help, and found out I had Crohn’s disease, a type of inflammatory bowel disease (IBD) that causes chronic inflammation of the digestive tract.
In a way, I was lucky because I was diagnosed relatively quickly and had some of the best care available; some people with IBD wait years before they get the right help. But that’s not to say my path to healing was an easy one. For a while I had to take steroids—powerful anti-inflammatory drugs that control IBD flares but come with potential side effects. While I was taking them my skin broke out, I struggled with insomnia and had frequent headaches.
Then I started a biologic drug, which can work in part by suppressing the body’s hyperactive immune response. That makes sense when you have an autoimmune disease like Crohn’s, but it can increase your chances of having side effects, including infections—in fact, I ended up getting an infection, and only after several weeks of sick leave and almost nine months on antibiotics was I able to fully clear it.
Living With a Chronic Condition
Then for about five years, starting in 2009, my Crohn’s disease left me in constant abdominal pain and I had to stay within close proximity to a bathroom at all times. I was also losing a lot of blood, which caused my hemoglobin levels to drop dangerously low. I remember being so lethargic I’d drag through the workday and go for iron infusions about once a month. My bosses at the time were supportive, but my health was clearly taking a toll on my career. I even thought about taking time off and going on long-term disability. It took a toll on my family as well, and I couldn’t have made it through that phase without the love and support of my family and friends, especially my wife.
What ultimately helped me the most was a series of surgeries. Between 2009 and 2014, I had three bowel resections to remove damaged portions of my colon. During the last procedure, nearly my entire large intestine was removed. These surgeries were painful and were followed by wound infections, putting me out of work for six to eight weeks at a time.
Whenever I hear about a novel drug in development or the possibility of using an existing drug to treat another disease, I get excited, because it ultimately means that patients may have more choices.ShareDid you like reading this story? Click the heart to show your love.
I’ve been fortunate to lead a relatively normal life since then. Yet even now I require medication to stay in remission. It’s helped a lot, but it’s not perfect. I still deal with urgency, which can make daily life, as well as travel—which I love—pretty difficult. Perhaps most importantly, I remain immunosuppressed, so living through the COVID-19 pandemic has been especially scary.
Feeling Inspired to Work Even Harder
IBD patients like me deserve better, as do those with
other chronic diseases who are struggling to manage their condition. Whenever I hear about a novel drug in development or the possibility of using an existing drug to treat another disease, I get excited because it ultimately means that patients may have more choices.
There are some great IBD treatments on the market, but—as with any treatment—they don’t work for everyone. While we keep moving toward the goal of finding a cure, there needs to be continued research on treatments that address symptoms and get more people into remission with fewer side effects and less invasive therapies.
Given my health history, healthcare has always been a passion for me and has been a career of choice for 20 years. About three years ago I joined the Janssen Pharmaceutical Companies of Johnson & Johnson as Head of Data Science for Global Development within our R&D Data Science & Digital Health team. While my team and I are not actually creating new drugs in a lab or testing them on patients, we play a crucial role in helping to accelerate clinical trials so that patients can get the help they need faster.
Building Better, More Inclusive Research
One of the major focus areas in clinical trials is patient recruitment. In general, only 3 to 4% of patients who are eligible for a given clinical trial actually participate in one. And, importantly, that percentage does not always reflect the diverse patient communities impacted by the disease. Making sure trial participants mirror the population with the disease helps ensure we create medicines that work for everyone.
I'm part of a team that is leveraging the power of data science to help drive patient recruitment and site selection efforts for clinical trials—including in the IBD space.
Using anonymized medical records and the latest methodologies, including artificial intelligence and machine learning, we are able to pinpoint sites with patients who may be able to participate in clinical trials. We can then analyze historical site and investigator performance data to determine which sites would be best positioned to participate in our trials. These recommendations are then used by our clinical trials operations colleagues to inform site engagement and, ultimately, patient recruitment.
The end goal? Bringing treatments to patients faster. And this new approach is already paying off, helping to expedite recruitment and clinical trial timelines.
I appreciate the opportunity to work toward making life better for all patients, and I feel immense gratitude whenever my team and our Janssen colleagues are proactively focused on a project related to IBD. Identifying new trial sites and enrolling participants faster isn’t merely convenient; it’s propelling research forward more quickly than before and, in doing so, bringing new hope to patients—like me.
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