Skopje, 11 April 2023 (MIA) — A month has passed since the legislative changes yet no progress has been made in procuring Trikafta for any other people with cystic fibrosis except the 12 most critical patients, Cystic Fibrosis Association representatives told a press conference Tuesday.

Gathered in front of the Ministry of Health, they urged the institutions to speed up the process. "We know there is some committee they are forming at a very slow pace, which is not what we expected," Cystic Fibrosis Association board member Fiki Gaspar told reporters. 

Gaspar said the state had not contacted the company about procuring other quantities and no work was being done on a program to provide the medication to other people with cystic fibrosis.

"Ten days ago we officially emailed all the authorities involved in this matter: the Health Insurance Fund, the Ministry of Health, and government representatives who are members of that health committee, but we have not received any replies in ten days," he said.

The cystic fibrosis patient's premature death that caused a storm of reactions in the media had resulted in providing Trikafta for the most critical cases only, Gaspar said.

"Our members feel that getting the drug for these 12 patients was only to appease the public and the media so the process could be delayed," he said.

He added that the health authorities had not discussed any programs, plans, or schedules of providing Trikafta to other people with cystic fibrosis or told them if the state had found a way to finance the medication.

"Public perception is that the work is done, but the reality is far different. Even though the purported legal obstacles were removed, no progress has been made in a month. Yet we were promised that in a very short time all patients will receive Trikafta," Gaspar said.

The association announced a protest if the state did not procure the medication.

Gaspar pointed out that it was hard to say how many of the 140 people with cystic fibrosis in North Macedonia were in critical condition because their health could rapidly deteriorate.

"There are 140 of us in total," Gaspar said. "Some have already told us they are entering that critical state, which is below 40 percent functionality although they had over 50-60 percent functionality when we started this work [demanding the state procure Trikafta] two or three months ago. But it is impossible to say anything with certainty because the parameters are always changing." mr/