Patients denounce the often long diagnostic wanderings and especially the non-reimbursement of the only effective treatment against their pathology.
It is not a rare disease, and yet Verneuil’s disease is orphaned. While this skin condition affects nearly 600,000 French people, it is still very little known to the public and doctors, regrets the Collectif Maladie de Verneuil, which is now organizing its first awareness day. The time for patients to also denounce the injustice of which they would be victims: France is the only country in Europe not to reimburse the only drug marketed for this pathology.
Verneuil’s disease is not a fatal disease, but it seriously affects the quality of life of patients. It usually appears in early adulthood and progresses by painful inflammatory outbreaks characterized by the appearance of abscesses or fistulas in the armpits, anus, inside the thighs or even in the chest. . Although many forms are minor, the disease can progress to a chronic and severe form.
But faced with these symptoms, the medical profession often remains unanswered. Patients wander from doctor to doctor for an average of 8 years. “Putting the name on Verneuil’s disease, it’s me who did it,” says Christophe, 38, suffering from this disease for 13 years at stage 1. I saw more than 20 different dermatologists for 12 years before. to seek to meet with a specialist in Verneuil’s disease to confirm my own diagnosis ”. A diagnostic wandering that can lead to inappropriate treatments.
Therapeutic hope
For the moment, no curative treatment exists. Only surgical interventions can contain the progression of the disease. But this heavy and invasive gesture must be carried out for all affected areas of the body. In 3 years, Baptiste, a 17-year-old patient, underwent 36 operations.
The European marketing authorization (AMM) of anti-inflammatory drugs of the anti-TNF-alpha family, such as adalimumab, raised great hopes in patients suffering from a moderate or severe form. Already used for psoriasis or Crohn’s disease, this drug is the only treatment to have shown efficacy, underlines the Collective Maladie de Verneuil. But in France, the disappointment is great: the High Authority of Health issues an unfavorable opinion for its reimbursement. France is an exception in Europe.
Source: Verneuil Disease Collective
“Injustice”
“While this drug represents real hope for patients with moderate to severe forms of Verneuil’s disease, the non-reimbursement decision adds inequality to injustice,” deplores Mrs. Dominique Orliac, Member of Parliament for Lot and member of the social affairs commission which supports patient associations. Indeed, this decision will result in the facts either by prescription outside Marketing Authorization, or by a situation where only a few patients lucky enough to join a cohort will be able to benefit from it ”.
The Collectif Maladie de Verneuil therefore called on the Minister of Health to provide her support to “crucially improve the lives of thousands of patients who today find themselves in a therapeutic impasse”.
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