Text: Joëlle Cachin
Photo: François Wavre / Lundi13

“Light burns my skin”

Nadia Coutellier suffers from an extremely rare disease, erythropoietic protoporphyria (EPP), a genetic intolerance to sunlight. Costly treatments exist, but reimbursement is not guaranteed.

Nadia Coutellier’s disease was diagnosed when she was five. “I remember being on a family outing on the train to Morges. My feet started swelling so much that they wouldn’t fit into my shoes. I was screaming and hanging onto my dad, but even the contact with his skin hurt me. I was burning up.”

Now 26, the young woman works as a medical assistant and shares her memories with emotion. She was deprived of her childhood and adolescence, she says, because of the mocking, restrictions and physical pain she had to endure because of her illness, erythropoietic protoporphyria (EPP). Less than 80 patients in Switzerland have EPP. In some cases, just a few minutes of even
indirect exposure to light leaves burns that can last up to four or five days.

When I found out that research was under way to develop a treatment, that someone was interested in my disease, it was magic.” In 2012, the Australian laboratory Clinuvel launched a test phase for a unique drug. Nadia takes Scenesse, delivered via a subcutaneous implant that is changed every two months. Results have been spectacular. “Now I can work, go on bike rides, ski, without pain every day. Live like a normal person. The only thing that influences my decision to do something is my determination, not my disease.”

The drug was officially launched on the market in early 2016 at 19,000 Swiss francs a dose. Nadia’s health insurance offered to reimburse 7,000 Swiss francs. “I told them that basically meant I was trapped. I sent letters, I personally contacted the medical advisor who supported me. After months of negotiations and media coverage, Nadia won her case. The celebration was short-lived. In late 2016, her health insurance informed her that it would stop reimbursing her treatment. Another struggle, another victory. But the threat is always hanging over her head. When Nadia talks about it, her voice trembles,
I can’t imagine my future without that drug. That would send me back to the nightmare of my old life, deprive me of a future. Keep me from being myself.”