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The Minister of Health announced that patients with EB and Fabry disease will receive reimbursement care from the state. From next week, patients will be able to visit hospitals that are already signing annexes to contracts with the National Health Fund. The reimbursement of new drugs will start on September 1.
New refunds – patients with rare diseases have changed
On Wednesday, August 7, during a press conference, Minister Łukasz Szumowski announced that the list of fully reimbursed drugs will be expanded. The ministry responded to the call of patients with rare diseases such as bullous epidermal detachment (EB) and Fabry disease. ABOUT access to free therapy the sick had been fighting for several years.
In April, the Association of Families with Fabry Disease sent a petition to the minister. It emphasized that Poland is the only country in the European Union that does not provide refunds enzyme replacement therapy people suffering from this rare disease. A similar letter, in response to the increase in prices of specialized dressings, was issued by the EB Polska Foundation, which fights for access to medical supplies necessary to treat epidermal blistering.
Patients covered by the reimbursement will be registered
Free products for patients with EB to be released from next week. The staff of around 20 hospitals across the country will be waiting for patients to report their requests. The list of these facilities will be available any day now. Doctors will prepare an individual list of necessary medical devices (including specialist dressings, bandages, adhesive tapes, bands, conditioners, disinfectants and liquids, disposable needles and food for special medical purposes) for each. Patients will be able to pick up the products from the hospital or – in special cases – to have their home delivered.
Two key drugs in the treatment of Fabry disease (Replagal i Fabryzyme) will be reimbursed under the new program from September 1.
Also read: 70 percent doctors have never come across a rare disease
What are Fabry disease and EB?
Fabry disease has been diagnosed in about 70 people in Poland. It is a congenital defect in metabolism caused by a genetic mutation. The enzyme alpha-galactosidase A is impaired and GL3 builds up in the body. As a result of these disorders, a number of symptoms appear, such as excessive sensitivity to pain, skin changes, as well as renal and heart failure.
Blistering epidermal detachment (EB) is a problem faced by 200 to 500 people in Poland. In this case, we can talk about a whole group of diseases with one common symptom – disorders in the connection of the epidermis with the dermis. As a result of EB, skin blisters appear even after minor trauma. They can also be chronic and cover an area of the entire body.