IBD Innovate: Patients as medical entrepreneurs

The following are two patient stories that were recently presented at the Crohn's & Colitis Foundation's second annual IBD Innovate Conference. They demonstrate how patients are taking active roles in creating new products to help IBD patients.

Crohn’s patient Slawa Madelska and Dr. Christianne Buskens, a colorectal surgeon at Amsterdam University Medical Center, have known each other through the years. Slawa, a Polish resident, traveled multiple times a year to Dr. Buskens’ facility for care. They both saw the need for better treatments for Crohn’s-related fistulas (abnormal connections that form between the intestines and another organ or the skin). About 35-50% of adults with Crohn’s disease will develop a fistula at some point.

Dr. Christianne Buskens, Mateusz Madelski, and Slawa Madelska

Dr. Buskens co-authored a study funded by the Foundation that found that, at best, only 50% of patients achieved long-term success with the usual surgical care for fistulas.  Too many patients, like Slawa, require repeated re-interventions, all involving hospitalization and sedation. Dr. Buskens also identified a great need for better tools, as current products on the market are often difficult to insert into open wounds. 

For Slawa, each surgical intervention required hospitalization, sedation, and precious time away from her young children. Slawa asked, “Why can’t we come up with something that can be used in an outpatient setting and doesn’t require sedation? Maybe we need a doctor to work with a patient and a designer to design a more empathetic solution.” 

Slawa, her husband (a jewelry designer), Dr. Buskens, and others at Amsterdam UMC came together to form Semiflex Dome Systems, which has created and 3D printed a customized wound care device shaped to fit the body more comfortably and can be manipulated more easily than the traditional products. This product was used successfully by Slawa, healing her fistula and improving her quality of life.

• Why this matters: With this product, patients do not require a surgical suite or sedation. It has the potential to reduce hospitalizations and decrease costs.
• Where it stands: Semiflex Dome System is planning on testing the product in Amsterdam in 2020.

“Let there be light" to heal IBD

Sharon Ben Yehuda is a biochemist and founder/ CEO of Photopill Medical, an Israeli start-up company founded in 2010. She is also a Crohn’s patient on a mission—to provide safe, affordable IBD treatment using light therapy. Sharon spoke candidly during IBD Innovate about her challenges as a Crohn’s patient of not being able to plan ahead, and going through all kinds of steroids and drugs. “I decided not to be passive, and instead try to make lemonade out of this lemon tree.”  

In 2010, Sharon founded Photopill Medical with the idea of using light therapy to change the microbiota, the trillions of bacteria, viruses, fungi, and other single-celled organisms that live in our bodies (with the greatest population in our guts).  

Sharon Ben Yehuda and Slawa Madelska

Light therapy refers to the use of low–level light sources for therapeutic purposes, including wound healing and tissue repair. Sharon had read that light therapy was approved in the UK to treat oral mucosal infections, and wondered, “how can we get this light therapy into the small intestine and GI tract to treat mucosal inflammation in IBD patients?” 
Sharon and her team have designed a swallowable, disposable, programmable light-producing pill (packed with electronics, software, and an algorithm for navigation and control) that can be pre-programmed to activate in specific locations in the body (depending on where inflammation needs to be controlled). 

• Why it matters: Sharon and her team are aiming to produce effective, affordable, and safe light-based therapy that can be personalized to target specific areas of inflammation. Sharon added that the technology may also help to heal fistulas.
• Where it stands: Sharon and her team have already conducted safety studies in ulcerative colitis patients, and are now seeking funding for additional clinical trials in Israel and the U.S.

The Foundation is looking forward to updates on these two potential life-changing products for IBD as they move through the research process.  

Sheila Roher, MPH, is a science writer for the Crohn's & Colitis Foundation.