Kyowa Kirin International (KKI) takes highlighting awareness of rare disease X-linked hypophosphatemia (XLH) literally with its immersive virtual exhibition, the “Shine a Light on XLH” campaign.
The virtual exhibition, which launched earlier this month for International Day of Light, features 11 digitally enhanced portraits of people with XLH, an inherited disorder characterized by low levels of phosphate in the blood. As the disease’s effects cause bone issues and abnormalities, the subjects have been “painted” by make-up artist and finalist of the reality show “Glow Up: Britain’s Next Make-Up Star” James Mac Inerney in glowing lines and designs mimicking the radiance of phosphorus.
The new effort is an expansion of Kyowa Kirin’s previous work in 2020 continuing to raise awareness around this rare but debilitating genetic disease, for which it markets Crysvita. Affecting one in every 20,000 to 60,000 people, XLH is difficult to diagnose, and, as with many progressive diseases, the earlier treatment begins the better the outcome.
The original project featured three patients in the glowing portraiture, but the Japanese pharma realized that there was so much more they could do with the project, so the idea of the exhibition was born.
“It was a wonderful idea, but it was quite limited in just three individuals which didn’t exactly signify the scale of the issue,” said KKI President Abdul Mullick in an interview. “The objective is so huge, that it’s going to take the community to mobilize as much as possible behind this if we’re to be successful.”
The exhibition, which is meant for viewers in the U.K., Ireland, Finland, Denmark, Norway and Sweden, features a short video of the participants discussing the challenges they face living with XLH. One woman, Ainhoa, talks about how she used to be able to run 5 kilometres at the gym and now she can barely walk around her house. Another woman, Annette, references a quote from a book about the disease that says people with XLH have “weak bones, strong wills.”
There is a recurrent theme throughout the exhibition—people who don’t live with XLH not understanding the disease and the feeling of isolation for those who do—but the overall look and feel is illuminating, literally. The glowing portraits are strikingly beautiful, both for the strength the subjects project as well as the delicate illuminated designs.
“When we think about raising awareness of diseases, the natural inclination is to go to how bad the disease is — how awful it is, what an impact it has. But I think to draw people’s attention as humans, we tend to be more optimistic. We respond to things that are positive, beautiful, and that makes us feel good. And I think this is exactly what this campaign is designed to do it. It pulls you in. And it helps you realize that there’s beauty and emotion here and then once you’re in, you understand what sits behind it, there is a story behind that beauty,” Mullick said.
Kyowa Kirin and rare disease biotech partner Ultragenyx’s FGF23 hormone blocker Crysvita nabbed FDA approval for XLH treatment in 2018 and in June 2020 added a nod for tumour-induced osteomalacia. Sales for 2021 had been estimated in the $180 million to $190 million range.