A culmination of its extended research into psoriasis and psoriatic arthritis, global pharmaceutical company Celgene is launching a fictional dramatization highlighting the unhappiness and frustration experienced by patients struggling with these common, currently incurable inflammatory disorders that can have profound psychosocial implications for patients.
As part of a new “edu-tainment” approach in support of ongoing international efforts to raise awareness of the extent of the sometimes hidden burden psoriasis and psoriatic arthritis impose on patients, healthcare providers, and society, Summit, New Jersey-based Celgene, with European operations based in Boudry, Switzerland, has announced the official release of “Millefeuille” (A Thousand Leaves).
The innovative short film has been developed and produced in collaboration with Bedrock Multimedia, a privately owned, U.K.-based communications agency that creates and delivers insight-driven medical communication and education programs, and Turtle Canyon Films — an award-winning film production company based at Pinewood Studios in Buckinghamshire, England.
Millefeuille’s fictional protagonist Élodie Laurent, a French pastry chef who loved nothing more than baking for the people who visited her employer’s café, but whose joy is shattered by something out of her control — psoriasis.
Élodie has obvious physical symptoms of the disease, including the red, scaly patches on her face and arms, but a closer look into her day-to-day life reveals that an immense emotional and psychological toll has also been imposed on her by the immuno-inflammatory disease. Self-conscious about her appearance, Élodie imagines her disease to be much worse than it is, and avoids family and friends. Having been forced to give up her job, she flees to the U.K. to take up a solitary and isolated existence in London.
Image screen capture from “Millefeuille” trailer
Although she initially resists her outgoing young English neighbor Holly’s friendship, Holly’s understanding and acceptance of her disease ultimately helps Élodie change her outlook on life and her sense of belonging to a community, and to rekindle her passion for baking and for life.
Typically, filmmakers who set out to educate on a topic close to their hearts will employ a documentary style, but the producers of “Millefeuille” instead decided to make a short drama, hoping to attract a wider audience and to inspire and encourage patients who may have given up hope that life with psoriasis could be different.
Celgene reports that 88 percent of psoriasis patients say their condition has affected their emotional well-being, according to surveys conducted by the National Psoriasis Foundation between 2003 and 2011, and that most psoriasis patients said they have experienced anger, frustration, and helplessness because of their disease.
“It’s been a really fascinating process doing this,” the film’s director, Alistair Clayton, said in a Celgene release. “It’s not something I’ve seen done before.”
Celgene notes that more than 100 million people worldwide — including some 14 million Europeans — are living with psoriasis, and up to 30 percent of them, in addition to the visible skin effects, are likely to develop psoriatic arthritis, a complication that can cause painful swollen joints resulting in a loss of physical function. The toll of these disorders is often hidden from the public, with patients like Élodie wearing long sleeved clothing and donning hats to cover skin lesions and hide psoriasis flares from friends and family. Difficult-to-manage symptoms like itching can also often become greatly burdensome for some patients, as is depicted in the film.
“‘Millefeuille’ is an accurate portrayal of the experiences that commonly affect those living with psoriasis,” said Nikhil Yawalkar, a dermatologist at the University Hospital Bern in Switzerland who served as a consultant on the film. “Many people with psoriasis isolate themselves because of such a deep sense of shame, embarrassment, and low self-esteem, and Élodie’s experience is reflective of this.”
But “Millefeuille” also offers hope for people living with psoriasis, and when Élodie ultimately befriends Holly, she finds understanding and acceptance and discovers that Holly is a millefeuille herself — deep, sweet, with many layers — helping Élodie rediscover her passion for baking and her place in the world.
Élodie is played by Anne Parillaud (“The Man in the Iron Mask,” “La Femme Nikita”) alongside Rosie Day (“All Roads Lead to Rome,” “The Seasoning House”) who plays Holly. The film’s international cast also includes Wolf Kahler (“Indiana Jones: Raiders of the Lost Ark,” “Sherlock Holmes”).
“We’re delighted to see a story that shows us the value of looking beyond the disease and seeing the person. It’s fabulous to see psoriasis getting this type of creative exposure,” said Christine Janus, BA, B.Ed, MBA, FICB, the CEO of the International Alliance of Dermatology Patient Organizations (IDPOC), and executive director for the Canadian Skin Patients’ Alliance (CSPA).
“Most people love cinema and a good story, and we’re delighted to see a story that shows us the value of looking beyond the disease and seeing the person,” she added.
The film opens on Friday, May 20. Inspired by the character Élodie’s passion for baking, Celgene is also launching a new Instagram campaign called #BakeADifference, which includes a baking competition inspired by Élodie’s passion for baking to help spread the word about the movie.
The company says #BakeADifference is a call to everyone to celebrate and support the journeys of the 163 million people worldwide who are living with psoriasis and/or psoriatic arthritis. People are asked to get creative in the kitchen and upload their baking creations. You can find out more by visiting @Millefeuille.Movie on Instagram or the movie’s website: https://www.millefeuillemovie.com/bake-a-difference/.
The making of “Millefeuille” was inspired by qualitative and quantitative research, including the Multinational Assessment of Psoriasis and Psoriatic Arthritis (MAPP), a first-of-its-kind, multinational, population-based survey of nearly 4,000 psoriasis and/or psoriatic arthritis patients and healthcare professionals in North America and Europe, to gain the perspective of patients and help physicians understand some of the unmet treatment needs. The survey identified that nearly half of patients had not seen a doctor in the past year and nearly 20 percent believed that their healthcare provider could not help them.
Producers of “Millefeuille” say that building a true picture of the psoriasis patient experience could not have been achieved through numbers and statistics alone, and in a bid to pressure-test the large-scale survey findings against a real-life, patient analysis, P.S.LIVE was created — a video ethnography project featuring patients recording themselves in their own homes discussing the impact of living with psoriasis and/or psoriatic arthritis.
From nearly 2,000 minutes of footage, insights were gathered that confirmed the findings of MAPP but also deepened the filmmakers’ understanding of the burden of the disease through patients’ own voices, and clarified that some psoriasis patients’ well-being is severely impacted by the disease, leaving them merely coping, rather than feeling empowered to address its demands.
“We believe that coping is not good enough and that patients deserve more. The World Health Organization recently published its Global Report on psoriasis, advocating for further engagement in multi-stakeholder efforts to raise awareness of the impact of this multi-faceted disease,” said Lee Heeson, vice president, Inflammation & Immunology, Celgene EMEA.
“Millefeuille has been launched to support these ongoing international efforts and it is our hope that using an approach which goes beyond the standard definition of disease information and uses fiction to bring the message to life can help those who are less motivated or not seeking psoriasis education, to challenge the status quo and live better lives,” Heeson said.
To ensure the accurate portrayal of the patient experience, the “Millefeuille” script was reviewed by expert consultants who assessed the content for medical-scientific accuracy, including University Hospital Bern’s Yawalkar and Prof. Ennio Lubrano, an aggregate professor of rheumatology and professor of the Ph.D. School in Health Sciences at the University of Molise in Italy.
Yawalkar observes in the Celgene release that “Millefeuille is an accurate portrayal of the experiences that commonly affect those living with psoriasis; disease manifestations can span several areas, including visible symptoms including the nails and scalp as well as the more commonly recognized lesions on the elbows and joint areas. These can further exacerbate some of the complex emotional and social challenges that patients are known to face; many people with psoriasis isolate themselves because of such a deep sense of shame, embarrassment and low self-esteem, and Élodie’s experience is reflective of this.”
Celgene points to a growing body of evidence suggesting that psoriasis may also be associated with serious comorbidities like metabolic syndrome and cardiovascular disease, and that the still not-fully understood pathomechanisms of psoriasis probably involve a complex dysregulation of both innate and acquired immunity.
The company notes that recent insights into the immunopathogenesis of psoriasis are providing new therapeutic opportunities, including biologics. In addition to clinical and therapeutic studies, Celgene is strongly interested in investigating basic immunological mechanisms, such as cytokines (IL-12/IL-23) and chemokines and their regulation through therapeutic interventions in inflammatory diseases like psoriasis in comparison to different forms of eczema. These investigations will hopefully identify new targets for future therapeutic intervention.
“Up to 30 percent of patients with psoriasis develop psoriatic arthritis,” said consultant Lubrano, “and it can take up to 10 years before symptoms in the joints start. A substantial number of patients with psoriatic arthritis suffer from enthesitis and dactylitis, both of which cause soreness and pain, heavily impacting daily activities which we normally take for granted, like showering, bending, getting dressed, or even chopping vegetables, like we see in the film.”
“We welcome ‘Millefeuille’ with excitement. We are very familiar with the challenges, the shame, and the pain faced by people living with psoriasis and other visible and disfiguring skin conditions,” says the IDPOC’s Christine Janus. “Finding new ways of getting this message across is important so that people can feel empowered to face their condition, seek help, support, and eventually live their best possible lives. It’s fabulous to see psoriasis getting this type of creative exposure.”
The full Millefeuille film can be found at www.MillefeuilleMovie.com, accompanied by a behind-the-scenes documentary and information resources about psoriasis and psoriatic arthritis, as well as the baking campaign.