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Rare diseases: Visibility through art

Rare diseases: Visibility through art

by host

In the town of Wasserbillig, under the warm autumn sun, Benny J lays down the guitar he’s been playing on a bench overlooking the river Moselle.

“I’ve always been creative and since I was younger, my art has been encouraged,” says the Luxembourg-based Australian artist. “Art has always been a part of my life, as a way to express my pain and my trauma.”

Benny means ‘expressing pain and trauma’ quite literally. He lives with nail-patella syndrome, a rare genetic disease that causes deformities in the bones, joints and nails, various internal organ problems, and chronic, debilitating pain.

“I was born without solutions or answers to my symptoms. When I was 10, doctors said I would be in a wheelchair by the time I was 30. That has a big impact on the way you view the world,” he explains. “Art pushes my understanding of life, and the more I can learn about myself, the more I can manage my own pain and my health issues.”

Nearly 85 percent of all rare diseases affect fewer than one person in a million1 — which means there is little basic scientific research available and no viable commercial market for drug development.

The result: 95 percent of rare diseases, or 80 percent of patients, do not have an approved therapy available to them.2 For diseases that do have treatments available, differences in health care reimbursements and patient populations scattered across borders result in great regional inequities within the EU.

“The expertize isn’t there for my specific condition. I need to find a doctor who’s interested in me. Sometimes they’re not interested in dealing with the complexities that come with a rare disease,” says Benny.

Amid evolving policy debates around rare diseases, POLITICO hosted a working group presented by Sanofi to discuss how to improve conditions in Europe for the development of treatments — commonly referred to as orphan medicines.

“There is a necessity for more investment. Right now, innovation and products are coming out very slowly,” says Christian Deleuze, deputy managing director for innovation at Sanofi, on the sidelines of the working group.

“We need to structure research, not only academic but public-private centers in which we are able to attract and retain talent. It’s a question of how much money we put behind the ability to diagnose, how we better organize these European [Reference] Networks and how we make sure that, in every country in Europe, there are sufficient experts dedicated to research.”

To mark the occasion, POLITICO Studio commissioned an artwork from Benny J that is a reflection on rare diseases and his specific condition, ailments and support network.

In “Time = Disorder,” Benny J depicts how entropy increases over time. The artist’s silhouette, scattered throughout panels reflecting different aspects of society, represents how people with rare diseases are hidden within their communities.

“I’m already finding people that are connecting with me through my art. [It’s helping] people connect when they’re going through their own pain,” he says.

Back on the banks of the Moselle, the invisible border over the bridge between Luxembourg and Germany becomes a fitting allegory. Collaboration, investment and the exchange of health data within Europe have and will continue to ensure innovation — and ultimately, speedier diagnoses and better care pathways.

“We are in a worldwide innovative space and what we want is people creating, developing and ensuring that patients have access in Europe,” says Deleuze.

The Rare Disease Paradox is an ongoing series from POLITICO Studio and Sanofi. Click here to read our immersive article on improving care pathways for patients. To discover more about Benny J, visit his website and Instagram profile.

REFERENCES

1 Nguengang Wakap S, Lambert DM, Olry A, et al., “Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database,” Eur J Hum Genet, September 2019, www.nature.com/articles/s41431-019-0508-0.

2 “Expanding research into rare diseases,” Horizon, ec.europa.eu/research-and-innovation/en/horizon-magazine/expanding-research-rare-diseases.

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