2024-04-14 04:00:00
At every meal, 10-year-old Mathis must be careful because, at any moment, he might develop a severe allergic reaction. “For example, if I eat a muffin now and another one tomorrow, I’ll have a reaction. I don’t feel well, I have trouble breathing, and I wonder if I’m still alive.”
His disease is rare and little known: hereditary alpha tryptasemia. Mathis also suffers from an immunological pathology which causes cardiovascular, gastrointestinal, neurological, respiratory and dermatological problems. “It can react to food, to emotions, to heat, to cold, to smells… It’s a multitude of things. Its cells are ticklish. They are likely to react for no apparent reason”, explains his mother.
A source of concern for Audrey, her mother. “I’ll drive him to school in the morning, and I’m like, ‘Am I going to see him once more or not?’ If he has a reaction, are they going to have the right reflexes?”
But in recent months, Mathis’ allergic reactions have been less frequent thanks to a drug from abroad, Pentatop. Total cost: 250 euros per month, not reimbursed by the mutual insurance company, because Mathis’ illness is not recognized.
“If he doesn’t have this medication, his health deteriorates. He can have serious reactions. We feel abandoned. We’re really nothing.” regrets Audrey.
So his family mobilized and appealed for donations to the residents of the neighborhood. “The tests we do at Mathis, the blood tests, certain medications are not reimbursed either and it is becoming financially burdensome. The only way out is to raise awareness.” adds Mathis’ grandmother.
To be considered rare, the disease must affect fewer than 5 people in 10,000. There are more than 6,000 identified. But some treatments are not reimbursed. To be so, several criteria must be respected. “The process always starts with the submission of a file by a pharmaceutical company. Then, we can schematize the process with 4 criteria. If there is no therapeutic value, if the reimbursement requested is disproportionate to this therapeutic value, if there are other alternatives in the therapeutic arsenal and if the budget is not available, we will indeed respond negatively to the reimbursement request”says Mickaël Daubie, spokesperson for Inami (National Institute for Sickness and Disability Insurance).
> How does an orphan drug become reimbursable?
European reimbursement is required
In the case of Mathis’ treatment, the pharmaceutical firm did not file a reimbursement request in Belgium. Result: policies are different between countries.
For the rare disease association, this system must change. “We need European reimbursement to avoid discrepancies between countries. This would be the best way to negotiate prices,” indicates André Bosly, vice-president of the Rare Diseases ASBL.
In the meantime, Mathis’ family can contact their mutual insurance company to benefit from a solidarity fund.
“At Inami, the Special Solidarity Fund (FSS) grants patients suffering from a very serious illness financial assistance for certain medical services which are not covered by traditional health and care insurance coverage. which are particularly expensive. It thus constitutes yet another additional protection net.details Inami.
“The Fund intervenes as much as possible for patients suffering from a very serious illness, having to resort to exceptional, rare or completely innovative care, for which no reimbursement is yet provided, who are particularly expensive, who have already has passed the experimental stage and for which there are solid and scientifically based arguments. The FSS thus provides additional financial support to many patients, often for several years. Patients can contact the FSS through their health insurance. “
According to the latest figures from Inami, published in 2021, more than 600 patients suffering from rare diseases requiring expensive treatments have obtained financial aid from this fund, for a total amount of 4.3 million euros.
In the fight for “optimal and sustainable” access to care, Inami also emphasizes that cooperation between European countries must be strengthened. Belgium has therefore already joined forces with other partners within the framework of two initiatives: Beneluxa and International Horizon Scanning.
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