Up In The Air With IBD
An award-winning project spearheaded by Takeda is making it easier for patients to FlyWithIBD
Long-distance flights can be an ordeal for a healthy traveler but for people with chronic diseases sitting in a pressurized metal tube at 35,000 feet for hours on end can present significant challenges.
Inflammatory Bowel Disease (IBD) is one such condition. Even when the condition is stable, people with IBD – which includes Crohn's disease and ulcerative colitis – run the risk of an exacerbation, and, for those currently experiencing a flare-up, aspects of flying that many healthy people take for granted – such as in-flight meals and quick access to toilet facilities – can become very important indeed.
However, thanks to an award-winning initiative from Takeda, flying with IBD is becoming a much less stressful experience.
Walking in patients’ shoes
FlyWithIBD came out of a wider focus on patient-centricity, says Rob Gallo, Head of Corporate Communications, Europe and Canada. “In Their Shoes is a two-day, fully immersive approach to learning that helps colleagues get into the mindset of patients. Employing an app, toolkit and role play, the simulation recreates the experience of living with IBD, both the emotional and physical impact of living with a chronic disease. It is a very powerful experience that has been enthusiastically embraced by colleagues who take part.”
For one colleague, the simulation was personal. “After we sent out the invites for In Their Shoes, Sarah (pictured left), a member of our Procurement team, knocked on my door and said she had been living with IBD for 14 years,” says Gallo. “Previously, she had not declared her condition to her employer but as she became more involved she became well-known within Takeda for her collaboration on these projects.”
For instance, after Sarah's involvement, the program developed the ‘night mode’ option; part of the app, it replicates the suffering of an IBD patient during a flare-up when sleep is severely disrupted. Today about 30% of participants opt for this extra mode. For Sarah: "The exercise needed to be as realistic as possible to be true to the patient experience."
Many people with IBD live with chronic fatigue, nausea and, worst of all, unbearable and unpredictable stomach pain on a daily basis. Living with IBD impacts physical and emotional wellbeing and, as a result, affects social interactions, family life and work or studies. “IBD generally affects people in the early part of their lives, in their 20s and 30s when their lives are taking off, when they’re building a career and getting on with their lives,” says Gallo. “However, because people with IBD can look healthy even when they may be going through some very challenging symptoms and treatments, they often have to deal with prejudice and ignorance.”
As more colleagues undertook the training, attitudes and levels of empathy within the organization began to evolve, he says. "A common language developed that enabled everyone to talk about IBD. When Sarah told colleagues about a mistake with an in-flight meal while travelling on our discussion forum, other people started commenting and sharing experiences, talking about how difficult travel is for people with gastroenterological diseases.”
It might sound like a simple issue – an airline got a passenger’s meal wrong – but it can leave passengers without food for hours. “When you have IBD, you book your in-flight meal well ahead, often a month in advance, because if you can’t eat on a flight or eat the wrong thing, when your immune system is already low, it can be a considerable health issue,” says Gallo.
Takeda decided to write to the five biggest airlines serving Europe to explain the situation and make four requests. These included more detail of the food being served at least 48 hours in advance, more meal choices, greater visibility of the ingredients, and, finally, priority seating near the toilet.
However, there wasn’t an immediate response, says Gallo. “FlyWithIBD was born out of waiting for a response from the airlines. Sarah’s team in Procurement offered to help by contacting the key account managers at the airlines. In parallel, we developed a Thunderclap in partnership with patient groups and a growing band of colleagues from all functions to raise awareness around what airlines could do to help people living with IBD.”
Each airline responded differently but, within six months, most had responded to two out of four requests and some had become highly engaged. “The situation was very complex, with so many different meal types and processes, but we aggregated the information, brought it to patient associations and IBD bloggers, then published it on a website, allowing patients to find out what is available from each airline in their country. We launched the Swiss website first and we’re about to publish the English site.”
An appealing proposition
At its core, FlyWithIBD is simply an appeal, says Gallo. “We are appealing another industry to consider simple changes that will help their customers. There is no commercial dimension for us, which the airlines realized quickly. We even had national carriers asking to meet national patient groups directly, which is music to my ears – starting this dialogue is a fantastic outcome.”
FlyWithIBD was recently recognized at the 2017 Eyeforpharma Awards, taking home the Most Valuable Patient Initiative trophy. “There were so many excellent schemes with a patient focus at the awards, but I believe the judges saw that FlyWithIBD was a relatively inexpensive program with the potential to have a positive impact on the lives of people living with IBD. It was also very quick and simple – we went from zero to Go in two months. The key is to keep things simple and have straightforward objectives are easily understood by all sides,” he says.