Half of patients with cystic fibrosis will receive medicine, the other half suspended?!
The Minister of Health Bekim Sally at yesterday's government session, he initiated to find money for 30 patients with cystic fibrosis to receive the drug Trikafta, which is a modular therapy that directly targets the disease, instead of just its symptoms. The problem is that according to unofficial data from the Cystic Fibrosis Association, there are 65 patients who need the drug, and this way there is a huge problem among patients about it.who will get it, and who will remain suspended.
According to Dr. Sally's announcement, a decision to provide the funds is expected to be made tomorrow. It is not clear what will happen to other patients who need Tricafta.
"It is not enough. We need it for everyone. A human life is a human life. They are causing problems among us, we are contacted by parents who have children with cystic fibrosis and are afraid that they will not get on the list. Our position is short and clear, we demand Tricafta for all but one patient," the president of the Cystic Fibrosis Association, Fiki Gaspar, told "Sloboden Pechat".
On Saturday, the association will hold a protest in front of the government, which has been ignoring the demands of cystic fibrosis patients for months.
More and more patients with cystic fibrosis move from Macedonia to neighboring countries where they receive modular therapy instead of just treating the symptoms of the disease, as is done in Macedonia.
Trikafta modular therapy affects the disease itself and not the symptoms like the drugs that are given to patients in Macedonia. It is a combination of several drugs in one and dramatically affects the improvement of the condition of many patients, especially with the lungs, which are the most affected.
Cystic fibrosis is a multisystem disease involving multiple organs. The lungs are most affected, but also the liver and pancreas. Some of the patients develop diabetes at the age of 15 or 20. The simplest explanation is that, the secretion that is cleared in other people in these patients remains and blocks the airways.