Description
From February 26 to March 3, 2024, the MATIO Foundation is organizing for the twenty-third time a social campaign called “XXIII National Cystic Fibrosis Week”, which will be entirely devoted to disseminating knowledge about cystic fibrosis, its symptoms, diagnosis and treatment and the prospect of living longer with this disease. On March 1, 2022, when, by the decision of the Polish Minister of Health, all causal drugs available in the world were included in the list of reimbursed drugs and patients were systematically qualified for the drug program, the prospect appeared that the disease, which until recently was treated as a sentence, may be considered chronic. New treatment for cystic fibrosis patients works and makes the disease no longer the dominant problem in their lives. Through better care for children with cystic fibrosis and therapy with new drugs, the lives of people with cystic fibrosis are significantly extended. Thanks to the introduction of the drug program, the number of necessary hospitalizations and, most importantly, lung transplants in patients with CF decreased dramatically, which is the most visible indicator of the effectiveness of the drug program. The use of treatment also influences the change in the degree of disability certificate to lower degrees than those issued so far. Currently, an important challenge is to expand the group of patients for whom treatment with causal drugs will be available. Since the introduction of reimbursement for patients meeting the qualification criteria for 2022, there has been no extension of indications for patients with other mutations or for the youngest patients. Because cystic fibrosis develops in early childhood and is a progressive disease. If reimbursement were expanded to include age and new mutations, the group of patients covered by treatment would be significantly larger on a national scale. Currently, in Poland it is estimated that approximately 15 – 18% of patients do not have access to causal therapies (resulting from various reasons, including age /up to 2 years of age/, lack of detected mutations or other contraindications).
This year’s edition of the National Cystic Fibrosis Week, “One disease – two lives”, wants to familiarize society with the current situation of cystic fibrosis patients in Poland. The knowledge we promote in this year’s will allow the average recipient to understand, even to a minimal extent, this invisible disability and the problems that appear in patients on the way to achieving the so-called “normality of life”, so obvious for a healthy person, and what is the current situation of cystic fibrosis patients in Poland.
This campaign is accompanied by various activities taking place throughout Poland. The date of the National Cystic Fibrosis Week also coincides with the celebration of Rare Disease Day.
If you want to get more information, write an e-mail: [email protected]
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