The below article was originally published on May 31st, 2017 on the International Pemphigus and Pemphigoid Foundation website, and is being republished here with permission.
It wasn’t easy getting to this meeting. After a four-hour train ride, I decided to walk to my hotel, nearly two miles away. It was rush hour, days after a major snowstorm. Boston was cold, and the streets were crowded with traffic barely visible beyond mounds of blackened snow. The walk was neither refreshing nor picturesque; it ended with a gauntlet of addicts outside the methadone clinic near my hotel. No sooner did I arrive in my hotel room when the phone rang. He was early, and I was spent. Everyone has a story.
There is a saying that one should never be too busy to meet someone new. Most of us are so harried or exhausted that we forget to hold a door, to let someone hop a grocery line, to stop for someone who seems lost. Or, these days, to even look up. Last month, during that post-snow Boston trip, I took a chance to set up a meeting with Cataldo Leone, DMD, the Dean for Academic Affairs and Professor of Periodontology and Molecular and Cell Biology at Boston University (BU).
It was immediately apparent that Dr. Leone was the type of person who takes the time to be kind. He was thoughtful and could not have been more accommodating, offering to pick me up directly at my hotel. From there, we headed to a favorite restaurant where he had much-needed business to conduct: confirming arrangements for his mother Carmella’s birthday brunch the following Sunday.
Students do show up—sometimes out of hunger and looking for free pizza—often with an intense curiosity at the opportunity to meet someone with a rare disease they might someday see in practice.
Dr. Leone was a catch of an interview, not only because he is such a busy person, but also because he has taken some of what the IPPF has provided in patient educator presentations and molded it to his needs at BU. As part of the IPPF Awareness Program, patient educators visit dental schools and talk to students in oral pathology courses about their diagnosis journeys. These presentations are paired with clinical disease information. The aim is to ensure that students recall what they have learned and understand the importance of early diagnosis from both a clinical and emotional perspective. But that isn’t quite how the story went at BU for the IPPF.
The IPPF has presented at BU twice in as many years. We have long asked for these experiences to be part of the curriculum, as a kind of requirement. Dr. Leone has felt that making it a requirement risks students coming with ulterior motives—namely, to get the credit. This past year, Dr. Leone acted on a visceral understanding that offering these “lunchtime learning opportunities” was memorable and effective enough that it was worth seeking out patients with other rare ailments. Students do show up—sometimes out of hunger and looking for free pizza—often with an intense curiosity at the opportunity to meet someone with a rare disease they might someday see in practice.
With this approach, Dr. Leone has created a kind of community of practice. It was not what we expected when the IPPF began the Patient Educator Program, but that’s the beauty of what Boston has done. Rather than turning away from the opportunity altogether, Dr. Leone worked closely with Kate Frantz, IPPF Awareness Program Manager, to ensure that BU’s participation aligned with the program’s guidelines. The IPPF’s Awareness Program can typically pay for the speakers’ travel and expenses if the school can meet an attendance requirement of 100 people. Because BU so valued the program, they offered to sponsor the IPPF’s visit. With approximately 80 students routinely attending the lunchtime presentations, it is clear from comments that students are actively learning lessons they will remember for years to come.
“We know each school is unique,” Frantz said. “Ultimately, what is most important is raising awareness of pemphigus and pemphigoid. Boston University is a terrific example of a school with a unique vision that is willing to work with us to make that vision a reality.”
About 10 to 15 percent of the BU School of Dental Medicine student body chooses this enrichment without enticements, according to Dr. Leone, further justifying the investment. Students take the time to show up. His eyes gleam as he admits he’d like to do more actual assessment of these programs. He’s also quick to point out that assessment is a tool to measure impact and that you can already feel that the “ball is rolling.” The patient educator approach is impactful precisely because it’s personal “when you interact with people. As people to people it is always better than one dimensional.”
Part of the multidimensional success of the BU School of Dental Medicine enrichment opportunities must be credited to Dr. Yoshiyuki Mochida. When he began to work at BU in 2009, Dr. Mochida’s interests were in rare diseases affecting craniofacial tissues. Mostly, he had been working on Dentinogenesis Imperfecta (a rare, inherited disorder in which the teeth are discolored, often translucent, and break easily). He was contacted by the boyfriend of a woman with the disease who must have seen his name associated with the research on the subject. The woman’s daughter also suffered with the same disease. Dr. Mochida helped by setting them up as patients in BU’s clinic. In 2015, a second family contacted him. This time, it was to get help advocating with an insurance company (Dentinogenesis Imperfecta is not covered in Massachusetts because it is considered a congenital dental issue. It is only covered in one state—New York). The problems patients faced became Dr. Mochida’s problems, and this led him from research to action. In that same year, the IPPF sent Becky Strong to BU as a patient educator, and the pair met.
Awareness is situational. It is about context. It is about the scene and the story.
“It struck me that this could be a series,” Dr. Mochida said. It could only benefit dental students to understand these complex awareness and advocacy issues as they embark on their professional careers. Perhaps P/P, like Dentinogenesis Imperfecta, are inherited, impacting the patient’s concerns about having a child. Maybe pemphigus and pemphigoid are not daily encounters in clinical practice, but clinicians will see these or similar diseases—with all their symptoms and accompanying complications. Dr. Mochida felt it was imperative to make this clear to his students. “I was already sparked on the rare disease path and the patient needs,” he explained, “but students might not be thinking about all those factors that affect a patient’s ultimate success.”
Dr. Mochida approached Dr. Leone with the idea about an enrichment series. He then contacted the National Organization for Rare Disorders (NORD) to find more patient speakers. NORD referred Dr. Mochida to the IPPF. Though clinicians have often used actual patients as models of one issue or another, the idea of partnering with patients as educators—true experts in their own experiences and diagnostic pathways—is an exciting and new development. According to Mary Dunkle, Vice President for Educational Initiatives at NORD, the IPPF’s program is an “excellent service” that is “absolutely innovative.”
In fact, NORD began to see the value of such a service three years ago when it sent a contingent of patients to the annual American Medical Student Association conference. Dunkle was hooked. “I was struck by the number of students who told us there, or who wrote to me afterwards, that they would ‘remember this for the rest of my life.’” It’s an effective way to train the whole clinician: remind them that patients are people, each with a unique disease story.
For the IPPF, partners like NORD can help to get patient stories across to a wider audience, while also paving the way for other patients to share their experiences. Though NORD’s program is newer than the IPPF’s, the “demand is there,” Dunkle affirms. “We often get requests for various community events—not necessarily in the classroom.” This is an important distinction from the IPPF’s focus on curricular ties. However it happens, the stories “go with these students the rest of their lives.”
There are myriad ways of communicating patient stories, especially when shared opportunities make sense for an organization and its patients. As a patient and former board director, what matters most to me is that there are passionate people who aren’t afraid to tell their stories with a clear goal in mind, even if it doesn’t begin the way we envisioned. Awareness is situational. It is about context. It is about the scene and the story. And while we can never be “too busy to meet someone new,” we should also never be so myopic as to ignore the opportunities that life presents when our stories come together. What is your story? How might being open to it, learning to tell it, and understanding how it intersects with others change the status quo?