The Power of the Patient Perspective: Q&A with Jackie Benson, Ph.D.
For more-than 700,000 men and women in the United States who have Crohn’s disease, a diagnosis often leads to a journey of trial and error, as patients learn how to manage symptoms the best they can. The causes of Crohn’s disease, which affects the digestive tract, are still not well understood. But like other chronic inflammatory diseases, Crohn’s disease comes in waves: patients tend to experience flare-ups of varying levels of severity, sometimes followed by periods of remission.
As part of Johnson & Johnson Innovation’s in-person patient Q&A series, the team recently met with Arielle, a woman diagnosed with Crohn’s disease when she was only 13 years old. In October, Arielle visited our South San Francisco JLABS to share her patient journey.
Jackie Benson, Ph.D., who leads west coast immunology-focused collaborations for Johnson & Johnson Innovation, moderated the conversation. Here, Dr. Benson discusses some of the key takeaways from the inspiring meeting with Arielle:
Tell us about Arielle’s journey, starting from the diagnosis.
Arielle has what I would consider a success story for modern medicine. She received an early diagnosis and was able to find a treatment that worked for her relatively quickly—in months, not years. I know this isn’t true for all Crohn’s disease patients. Having that early diagnosis is extremely helpful, as it allows the patient to begin treatment earlier. With her disease well-controlled, Arielle is living a fairly normal life today. She is married and has a young child, and doesn’t have to think about her disease at all times. Things for her have not always been easy, of course. And she does continue to keep an eye on her diet and levels of stress, which can exacerbate symptoms. But she is very tuned in to those cues and is able to adjust her activities accordingly.
Did any parts of the discussion with Arielle surprise you?
I was struck by how emotionally difficult the journey was for Arielle. She was only 13 at the time of diagnosis, an awkward age for many adolescents. Your body is already going through so many changes. Experiencing the symptoms of an unknown disease was very scary for her and for her family. She lost nearly 50 pounds in only a few months, which had impacts for her at school and among her peer groups. She also had to drastically change her diet after her diagnosis, which she did all on her own through trial and error. What makes these diet changes even more difficult is that they often work best when a whole family adopts them, to keep a person like Arielle on track. Now she knows that a plant-based, no-meat diet works for her, and what’s remarkable is she determined this without any guidance.
What factors allowed for Arielle to be diagnosed so quickly? Many Crohn’s disease patients struggle for years before getting any real answers.
I hear so often from patients that the key to their success was findings the right doctor. For Arielle, her mother is a physician and her father worked for a pharmaceutical company, so she had the resources to navigate to a top children’s hospital and ultimately find the right treatment. I am so very glad Arielle ultimately found the treatment that worked for her. But I can’t help to think about all of the patients who don’t have the resources and don’t even know where to start to find such resources, something Arielle expressed concern about as well. Many people simply aren’t geographically located near a top physician or academic center, and don’t have a great understanding of the healthcare system. It’s one of those facts of life that gives me great concern. It’s not enough to just bring a drug to market—there are many others factors at play that determine how someone finds that medicine.
Tell us more about the treatment landscape for Crohn’s disease. Arielle found a medicine that worked for her. Is there a need for more or better therapeutics?
Yes, we absolutely need new and more precise medicines for Crohn’s disease. The entire process of finding a medicine that works is trial and error, and it can take a patient years to achieve “treatment success.” Arielle did find a treatment relatively quickly, but it’s worth noting that even she had to cycle through several treatments before she got there. First-line treatments are often conventional drugs that are taken orally. If those don’t work, patients may progress to biologic medicines, which are infused or injected. However, these medicines don’t work for everyone, so there is a need for new mechanisms of action, especially oral medicines that can deliver biologic-like efficacy with improved safety profiles. We are seeking innovation in this space to build upon our commitment to inflammatory bowel disease.
Do you foresee a time in the near future when a patient could take a test for Crohn’s disease and immediately find the perfect medicine for their disease?
Yes, that’s in fact what we strive to achieve for patients. But first, we need more information. We need to understand the molecular basis of early disease and find out how to intervene before clinical symptoms arise—before patients have to endure so much discomfort and disruption to their lives. We're not there yet, but I’m hopeful that with continued investment in research and novel approaches, we will get to the point where we can predict who may develop Crohn’s disease and intervene to prevent the disease from ever happening.
What work is Johnson & Johnson Innovation doing in this area?
We are constantly looking to innovate in this space and continue to do so through collaborations with companies focused on novel science in bringing forward oral therapeutics, and through microbial approaches that harness the promise of the gut microbiome to potentially treat and intercept disease. Hearing stories like Arielle’s continue to motivate us to do our very best to continue to lead innovations in Crohn’s disease.