“Opzelura”. Eight letters for a therapeutic revolution, that of the very first medicine against vitiligo, a funny name for a funny chronic skin disease, which creates white spots on the body. And causes discomfort, even shame, for the 600,000 to one million French people who suffer from it. But everything will soon change: the European Medicines Agency announced on Friday the marketing authorization of the first treatment ever developed, “a cream that should be in pharmacies in the coming months”welcomes Martine Carré, president of the French Association of Vitiligo (AFV), the time to clarify certain regulatory points, including reimbursement – or not – by social security.
0.5 to 1% of the world’s population is affected by vitiligo
Delivered on prescription and under medical supervision, Opzelura is the promise of alleviating the burden of the sick. According to the WHO, 0.5 to 1% of the world’s population is affected by these patches of depigmentation that evolve from day to day. The two-tone beard of former Prime Minister Édouard Philippe is, despite himself, one of the most famous examples. But also Nathalie Simon, the sportswoman who has become a presenter, Gaëlle Pietri, the ex-girlfriend of actor Gaspard Ulliel, or even Winny Harlow, 29, this Canadian model, who was the first to make her a strength. Known or not, they wake up every morning not knowing what their bodies will look like. Some talk about it. “Others, many, shut themselves up in silence and taboo, to the point of isolating themselves”laments Martine Carré.
First hopeful results
For more than thirty years, the AFV has been fighting against clichés: no, this autoimmune disease is not contagious. Yes, it strikes without predominance of sex or race, contrary to a still well-established belief, according to which it would be frequent among black skins. All undergo the same implacable mechanism: “The immune system attacks the melanocytes, preventing these cells from producing melanin in the skin”, explains Professor Julien Seneschal, head of the specialized unit at the Bordeaux University Hospital, one of the three reference centers in France, along with Créteil and Nice. Patients had no hope of being cured before Opzelura, developed by the American biotech Incyte. Two international studies carried out over the past three years (in which six French services in Bordeaux, Créteil, Martigues, Nice, Rouen and Toulouse took part) showed that“about 31% of patients […] achieved at least a 75% improvement in their facial pigmentation after six months of treatment”.
A huge victory for all those who for years have struggled to find an effective remedy for a disease that is gradually erasing them. “If you go to ten dermatologists, a good portion will tell you not to go in the sun. But this is precisely one of the recognized treatments “says Nathalie Simon, who has suffered from vitiligo since the birth of her daughter, twenty-four years ago. Long years of medical wandering, make-up and other subterfuges followed… Three years ago, his daughter told him to stop hiding. “She saw my difference as a strength”says the former windsurfing champion, who now reveals her “giraffe hands” facing the camera. Better still, the host displays them on social networks, joining these Instagram or TikTok accounts dedicated to vitiligo, like that of Amara Aleman, an American artist who has made her spots a support for body art. These changes in outlook broke the wall of silence, the arrival of the medicine that of the “therapeutic desert”, rejoices Professor Seneschal, who reveals that other innovative treatments should follow. “ Our team is evaluating an oral treatment combined with phototherapy [exposition aux rayons UV], he announces. We hope to communicate the results in October, at the European Congress of Dermatology in Berlin. » Enough to make vitiligo finally invisible.
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