Q&A with Dr. Meena Bewtra, IBD Patient and Researcher

March is Women’s History Month. The Crohn’s & Colitis Foundation would like to take this opportunity to put the spotlight on some of the fearless women leaders committed to making a difference for IBD patients. For this edition, Cecile Norris, Senior Research Manager at the Foundation, interviewed Dr. Meena Bewtra and asked her to share her story with you.

Dr. Bewtra is a researcher and gastroenterologist practicing at the University of Pennsylvania, and is also an IBD patient. She has been involved with the Crohn’s & Colitis Foundation for several years, investing her time and effort in accelerating research in IBD, participating as an investigator in the Foundation’s research initiatives and advocating for patients.

Please tell us about your journey as an IBD patient and researcher.

I was diagnosed with IBD during my first year as a Medical and Doctorate student (MD/PhD) in medical school—actually, my first month of medical school—and within 6 months had become so sick that I was hospitalized for nearly 2 months and had to withdraw for the remainder of the year.

I experienced first-hand many of the issues IBD patients face: the symptoms worsening (instead of improving); challenges navigating the health system with a chronic illness; the frustration of medications not working; the fear of the unknown complications and believing I may not make it out of the hospital; and the side effects of the medications I needed.  As a result of health insurance issues and the severity of my illness, I had to compromise on my initial goals and withdraw from the PhD portion of my program. This was extremely depressing for my Type A personality (high-dose prednisone didn’t help that depression, or the Type A personality!).

I think my gastroenterologist doctor felt badly for me so he gave me a very straightforward research project I could do at home—a simple analysis of a J-pouch website the University of Pennsylvania had started. This was my first exposure to clinical research. And as a result of my illness, I had to accommodate an extra year of medical school, so I turned this into an opportunity and [went] to Boston where I got my Master in Public Health (MPH) in biostatistics and epidemiology.  That experience further sparked not only my interest in clinical research, but also my passion for public health and patient advocacy.  Building on what I learned in completing that MPH, several years later I was able to finally get my PhD—in epidemiology—during my fellowship. I would never wish this illness on anyone; but I will give it credit for completely changing my life and helping me to find a new passion in research.

What are you particularly interested in IBD research?

I actually have a three-prong research interest in IBD.  As an epidemiologist, I am interested in clinical trials and outcomes studies in IBD—studying the natural history of IBD and how our treatments changes disease course; and the side effects of the medical therapies we use.  A clinical trial can only tell us so much about a medication—many of these trials are for a relatively short time period and in a relatively smaller group of patients.  Outcomes research allows us to look at the bigger and longer effects of these treatments (both good and bad).

My PhD was in something called discrete choice experiments, which look at patient (or provider, society, etc...) preferences for various treatment options, and how they value the risks and benefits of the choices they have to make.  I tend to focus on patient preferences—I think it’s increasingly important that we give a voice to patients in the complex process of decision-making with their disease.  After all, patients are the ones who carry the burden of the disease and the decisions about how to treat it.

I am also the Principal Investigator of our institution’s IBD prospective biobank.  The goal of the biobank is to enroll every IBD patient seen in our department and collect their disease history and tissue, stool and blood on an on-going basis throughout their disease.  At a larger scale, I am one of the site Principal Investigators for the Crohn’s and Colitis Foundation’s initiative, IBD Plexus. IBD Plexus is one of the largest research databases centralizing clinical data and biosamples of IBD patients across North America. It will allow us to really examine what is going on in patients at a molecular level, and pair that information with their disease history so we can define (for example) why some patients respond to certain medications, or what predicts who will or will not have a complication from their disease. By partnering with institutions across the country, IBD Plexus truly accelerates this type of research—and I am so excited to see how the landscape of IBD research changes as a result!

There is one more aspect of research in IBD that I think is essential, and that is the aspect of public advocacy.  I think all researchers, doctors, scientists need to be more vocal and active in our fields—and IBD is no exception.  This is a disease of a lifetime, with ramifications beyond just the disease itself.  Therefore, research cannot be limited to just finding new mechanisms of disease or new therapies—we need to advocate for the whole patient, including protections for their access to health care.  I am so proud to see more and more physicians, especially in the field of IBD, doing this; the Crohn’s and Colitis Foundation and patients themselves have been doing this advocacy work from the beginning—we as physicians need to catch up with all of you!

Would you have a last message to share with our readers?

We are at an important watershed in American history for women.  Increasingly, the difficulties and unique challenges that women face are being exposed and recognized.  Now imagine facing those more general challenges as a woman with a chronic disease like IBD.  Trust me—it is not easy.  Self-confidence may mean something as simple as getting through a meeting without running to the bathroom.

The research we do in IBD shapes how we approach this disease.  And for women, this may have additional meaning in any number of ways.  It may provide support that surgery is not the end of the world—that you are still beautiful, still lovable, and now part of a special group of even more beautiful sexy women.  It may provide a new therapy that finally gives you the confidence to go back to school, apply for the promotion in your job, or run for office!  It may be reassurance that you are not a bad mother and you did not *cause* this to your child.  It may provide the reassurance that you are not harming your pregnancy by responsibly treating your disease.  Perhaps it simply provides validation that this is not just *you,* but something suffered by a greater group of people.  As events have shown, this may be the most important message we can send to our patients—a message of inclusiveness and support.

We would like to thank Dr. Meena Bewtra for her work and commitment, and for sharing her perspective.  Stay tuned to this blog for interviews with other extraordinary women working in IBD research!

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