The state should immediately provide funds for the introduction of modulatory therapy according to the principle as in all European and Balkan countries, with an appropriate plan and strategy to cover the entire population suffering from this rare disease.

This was requested at today's protest in front of the Government, organized by the Cystic Fibrosis Association, which appealed for the right to modulatory therapy for all patients with this disease.

– Our request for modern therapy is based on the positive experiences that patients with cystic fibrosis have in various countries in Europe, as well as in the countries of our closest neighborhood – Greece, Bulgaria, Serbia, Republika Srpska, Croatia, Slovenia, Montenegro, where these drugs are available, thus renewing our aspiration and hope that people living with this difficult condition in Macedonia can live to adulthood, form their own families and feel like equal participants in our society, emphasized the president of the Association, Fiki Gaspar.

He reviewed the benefits of modular therapy for patients and society. As social benefits of modular therapy, he pointed out, the development of fully able-bodied persons, reduced absences from work or school for persons suffering from cystic fibrosis to ensure continuity of activities, reduction of the total amount of the range of medicines that they must use daily, reduction of hospitalization for venous therapy and all additional services that are part of the hospitals every three months, reduction of absences from work for parents or guardians who take care of these patients, which will save the budget for sickness and absence from work, better quality of life to everyone who has and loves a person with cystic fibrosis.

This, according to him, will increase the sufferers' capacity for uninterrupted creation or work, better mental health of all involved parents, patients, spouses or children, which brings great overall benefits such as increased concentration, greater focus on current activities, greater proactivity and stability and strengthening of faith in institutions and the system.

As individual benefits from modular therapy, significantly improved health, no struggle for breath and constant coughing, longer and better quality life, opportunity to form their own families, reduced marginalization and stigmatization, better mental health of all involved parents, patients, spouses or children, gaining personal security and independence.

The protest demanded that the clinics for pulmonology and children's diseases create conditions for the treatment of patients according to the protocols for the treatment of this condition, by forming expert teams and appropriate and standardized conditions for hospitalization. The organizers of the protest called on the Health Insurance Fund to provide medical devices, which are necessary for every patient in daily therapy, such as inhalers with a high degree of diffusion on the recommendation of a specialist doctor and Pep/Flutter for physical therapy

- The health and life of a group of young people is something that must not be put at a price and must not be ignored. We have the right to medicine, and they have an obligation to provide it to us, Gaspar pointed out.

The second president of the Association, Ivana Atanasovska, said, among other things, that cystic fibrosis is a disease that does not choose whose host it will be, whose organism it will inhabit and whom it will choose as its companion.

Mario Neloski, who is 18 years old, shared that he is trying to prevent the progression of the disease through sports, appealing in the process to receive the "trifacta" medicine. His father Blagoja, as a single parent, said that the fight with his son's illness was difficult.

The Ministries of Health and Finance and the Health Insurance Fund announced yesterday that they will be in constant mutual communication with the manufacturer regarding the procurement of the drug "Trikafta" for patients with cystic fibrosis.

The Ministers of Health and Finance, Bekim Sali and Fatmir Besimi, after yesterday's meeting, informed that the therapy is initially for eight patients in a more serious condition, and the aspiration is to procure medicine for 30 patients during this year.

The Minister of Health, Bekim Sali, said that today it should be known when the medicine will arrive for patients with cystic fibrosis and expressed hope that it will be by the end of the week.

After the meeting, Sally said that he hopes that in the near future, with all the necessary amendments to the Law on Public Procurement and other laws related to the procurement of medicines and the provision of financial resources, therapy will be provided for these patients. He announced that he will initiate changes during the next week and hopes that they will be supported in the Parliament.

– In the price section, there is still no specific final price. We have initial information about the price of one treatment for one patient per year, but the final price remains to be received from the manufacturer, Sally clarified.

Minister Besimi said that a solution will be found to procure this drug directly from the manufacturer, as it is expensive.