Isabelle Schaal suffers from a chronic neurological disease, cluster headache, nicknamed suicide disease. A treatment exists, but it is not reimbursed in France.
When Isabelle talks about the effects of her first injection of Aimovig (Novartis laboratory), in 2019, a treatment with monoclonal antibodies, tears accompany her story. Tears of happiness, that of an unexpected rebirth. Isabelle Schaal, 48, suffers from cluster headache (AVF), nicknamed the disease of suicide, as the pain endured leads to desperate acts. After twenty years of medical wandering, a failed neurological operation from which she still suffers the consequences, AVF was finally diagnosed in January 2018.
“I was having ten seizures a day at the time. My face was swelling with swelling under my eyes, dental pain and burning sensations in my eyes to the point of wanting to pull out my teeth and eyes. I was a zombie bedridden, I was on the edge of the suicidehonestly, but I was holding out for my two kids.” Isabelle tests everything, without result, to the point of becoming drug-resistant. In 2019, this is the point of no return. All treatments in France are exhausted.
Isabelle must pay out of her own pocket €560 every 28 days
In a Canadian scientific journal, an article then caught his attention: a monoclonal antibody treatment, Aimovig, was developed for chronic migraines. “There is no cure for AVF, all are diverted from their initial use. I was 46 years old, two children: I did not want to give up. I went to Switzerland to buy the injection at the price of 560 € . I prayed it would work. It was the cure for the last chance.”
Isabelle goes through four days in hell. Crises are on the rise. “My neurologist told me that my body was fighting against the antibody. But on the morning of the fifth day, it was over, confides Isabelle, in tears. I woke up as if I was new. I no longer had nothing. Since then, I keep a diary. Every twenty-eight days, I get an injection. I lost all my hair [un effet indésirable qui affecte 2 % des patient-e-s, NDLR], but I was no longer in pain. My body took fifteen months to accept the molecule. I haven’t had a seizure since. A rebirth at a high price: €560 to be paid out of pocket every 28 days and, for some time now, every 56 days. “I can afford it, but not everyone can.”
“Medication cannot be a question of money”
There are 150,000 people diagnosed in France, not counting people who are wandering about their diagnosis. According to Isabelle, the antibodies emitted on the market to treat chronic migraine would be effective. “I am fighting for them to be sold in pharmacies in France and reimbursed. As such, I have launched a petition (available on change.org/p/disease-of-the-head-and-neck-living-in-hell) signed by more than 128,000 people, I requested an interview with the Minister of Health…”
“Since March 22, 2021, a monoclonal antibody, Emgality (Lilly laboratory), has been on sale in France. It is a subcutaneous injection at €245. I am campaigning for the National Security Agency of medication and health products (ANSM) validates a temporary recommendation for use (RTU) with a reimbursement agreement. Getting treatment can’t be a question of money, it’s inadmissible!”
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