A few years ago, researchers studying and treating cystic fibrosis at a variety of Midwestern institutions decided to revive a dormant tradition, an annual conference inviting all the regional CF researchers. Addressing the crowd gathered last Friday evening, Tim Starner, MD, explained that they realized, given the enormous strides occurring and the great variety of work being done, a day spent updating each other and building new connections would be worth everyone’s time. Each year since, hosting duties have rotated among the participating institutions; this year it fell to the University of Iowa. Dr. Starner, Associate Professor of Pediatrics – Allergy, Immunology, and Pulmonary, and Tahuanty Pena, MD, Clinical Assistant Professor in Pulmonary, Critical Care, and Occupational Medicine, served as this year’s directors.
More than 160 attendees included researchers and providers from 15 different centers across the Midwest, including University of Oklahoma, Lurie Children’s Hospital of Chicago, University of Nebraska, University of Missouri, Children’s Mercy – Kansas City, and University of Minnesota. Each institution’s representatives, whether fellow or faculty, came prepared to present on their recent discoveries and initiatives and, more important, to learn from what they heard.
Friday evening began with a social hour and dinner, followed by a plenary presentation from Mike Welsh, MD, Director of the Cystic Fibrosis Research Center at Iowa. Dr. Welsh served up ”tapas-style”-introductions to the arc and direction of Iowa CF research, from the doors that the CFTR gene’s discovery had opened to what the airway models in both pigs and ferrets have allowed scientists to explore. In less than 30 minutes, Dr. Welsh summarized a tremendous amount of Hawkeye activity.
The consortium began in earnest Saturday morning. Susanna McColley, MD, described the usefulness of collaborative learning in quality improvement projects. The bulk of the rest of the day gave attendees lots of options. Five different breakout rooms were located on the second and twelfth floors of the Hilton Garden Inn. More than a few hour-long breakout sessions were further divided between two presenters.
This resulted in a day filled with nearly 25 different presentations, including ones from Iowa’s internists, pediatricians, pharmacists, dietitians, and researchers, such as Drs. Doug Hornick, Katie Larson Ode, Brittany Bruch, Michael Eberlein, Julia Klesney-Tait, Megan Cannon, Alejandro Pezzulo, and Mahmoud Abou Alaiwa.
Certain themes began to emerge. The average life expectancy for a person with CF now reaches well into their late 30s, when previously CF was known as a pediatrics disease. But because of new treatments and a better understanding of the mechanisms extending their lives, patients are also beginning to face many of the same conditions any adult can face. A big portion of the day, therefore, was spent disucssing management strategies for people with CF and:
- Colorectal cancer
- Depression or other mental health problems
- Diabetes or other endocrine-related problems
- Digestive issues
In each case, special considerations are needed for a person with cystic fibrosis. It is both a great sign of success and, perhaps, a signal that more work and work in new directions needs to be done. “This is a good problem to have” was a common refrain from many presenters.
As the day came to a close, Dr. Starner introduced the final pair of speakers to the assembled crowd. The previous year’s surveys revealed a desire for the patient perspective to also get a voice at the event. And so, Lisa Greene, MA, CFLE, and her teenaged daughter, Kasey, each spoke about what Kasey’s diagnosis of CF has meant for their lives. It was an emotional 90 minutes as they detailed the weight of adherence to regimens, the amount of planning required for a sleepover at a friend’s house, but also the joy that could easily be found in clean bills of health or crossing monumental life markers. Both mother and daughter shared perspectives that reminded everyone present of how important it was to keep the focus on working as a team, on defining “quality of life,” and on maintaining empathy.
Congratulations to the Iowa hosts of the 2018 Midwest Cystic Fibrosis Consortium on an impressive event, especially to Brian Wayson and Renae Juska for keeping things running so smoothly. Next year, the group will reconvene in Columbia, Missouri.