It is unfortunate that in the 21st century, when there is a drug for this disease, cystic fibrosis patients die. We are very outraged by the long wait and deciding whether to bring the drug and for how many patients. There is no more time to wait, said Irena Vasilevska, mother of a child with cystic fibrosis.
The Cystic Fibrosis Association protested in front of the Government building today, outraged by the attitude of the state from which they have been demanding the “Trikafta” drug for their disease for years. Blagojce Ilievski died yesterday, suffering from this rare disease while waiting for the drug that could have saved his life.
Cystic fibrosis patients cannot wait another minute. I request all the authorities to bring the drug for all 60 patients who are eligible for the drug. If they had decided earlier, Blagojce might have been alive, said Vasilevska, who added that they came before the Government to pay respect to their comrade Blagojce who lost the battle with the rare disease.
Before today’s protest in front of the Government bulding, Minister of Health Bekim Sali announced on Facebook that 140 million denars have been provided for the “Trikafta” drug for 8 patients with cystic fibrosis.
It is about of budget funds intended for the Clinic for Children’s Diseases, where the sum of 563,504,040 dens increases to 703,504,040 dens, that is, for an additional 140,000,000 dens, Sali announced on Facebook.
In the country, there are about 130 patients with cystic fibrosis who have been begging and protesting for the past months for the state to provide them with the “Trikafta” drug, which significantly improves their lives.
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