Patients with blistering epidermal detachment spend enormous amounts of money on dressings each month. With the announcement of the July reimbursement list, it turned out that their costs will increase even more. Fortunately, this is about to change now – they will receive dressings for free.
The epidermis epidermis is a group of rare, genetically determined diseases, the common feature of which are disorders in the connection of the epidermis with the dermis. As a result, people with EB have an extremely delicate and vulnerable epidermis. Even a minor trauma to a patient with EB can lead to the detachment of a large area of the epidermis from the dermis. In patients with the most severe form of the disease, even 70 percent. the surface of the body is covered with wounds. The disease causes skin deformation, contractures of hands and feet, loss of teeth in early childhood, adhesions in the esophagus, malnutrition and anemia.
– Patients suffering from blistering epidermal detachment (EB) will receive all the necessary dressings completely free of charge – said Minister of Health Łukasz Szumowski on Monday. He indicated that this solution would apply to approximately 100 patients.
Along with the July reimbursement list, patients’ surcharges for epidermolysis bullosa (EB) dressings increased. The parents of patients pointed out that this was yet another increase in subsidies to dressings used in EB in recent years. They estimated that the monthly cost of caring for a patient with EB from July amounts to approx. PLN 8. PLN (these include the costs of dressings, needles, disinfectants, ointments, conditioners).
Minister Szumowski met with those suffering from EB on Monday.
In an interview with journalists, the minister informed that in the coming days an informal team of patients and representatives of the National Health Fund and the Ministry of Health will develop a list of products that patients with EB need, as well as a list of places where they are treated.
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Szumowski assured that the ministry would like to offer these patients “comprehensive care, that is, that they should get all the products they need to function, live, and treat this serious disease”.
– There are about 100 patients who benefit from reimbursement in the field of dressings to a large extent in Poland, therefore it is a very narrow group and we will reach everyone individually and each one will individually receive the therapeutic kit they need, and the National Health Fund it will finance it – he said.
Szumowski ensured that patients would receive free dressings and other necessary products, such as needles and supplements.
– The entire cost will be included in a medical visit or a one-day visit, in such a way that it does not go through pharmacies anymore, because the reimbursement act operates here, only that it is an element of a doctor’s visit, where the patient will be provided with all the necessary funds. In two weeks I would like it to be ready and practically done – he informed.
The minister pointed out that the so-called the reimbursement act is not aimed at rare diseases. – It has mechanisms that save public money and are important, but in the face of rare diseases, where these individual forms of therapy are extremely important, this solution is not the happiest. We already have it corrected in the amendment, but it will take some time before it goes through the whole (legislative) cycle, and patients need these products here and now, ‘he said.