Skopje, 5 July 2023 (MIA) - Trikafta will be provided for at least 42 patients with cystic fibrosis by the end of 2023, Health Minister Fatmir Mexhiti has promised to representatives of the Cystic Fibrosis Association during a meeting at the Ministry of Health on Wednesday.

"By the end of the year, maybe even earlier, as talks with the company have already started. At least 30 patients, and additionally 12 more will be provided with the medication, although the number can increase because we are waiting for results from the department of Pulmonology," said Ivana Atanasoska, president of the Cystic Fibrosis Association.

The other president of the Association, Faki Gaspar, said that cystic fibrosis patients are still waiting for a systemic solution, and a decision will be made on Wednesday whether a protest will be staged. 

Three representatives of the Association attended Wednesday's meeting at the Ministry.

"We discussed the two key topics which are most important to us, as patients. The modulator therapy, which we are fighting to make it available to all patients, and the adult clinic, which was undecided until now. We were told that the working group we were waiting on were finishing their talks, they are waiting on the Pulmonology results, which are to arrive soon. We were also informed that they are in constant contact with the company about procuring the medication," Gaspar noted.

He added that they also discussed the adult clinic.

"We related our experiences, and how patients were not satisfied with the progress of things. They assured us that there will be no such scenarios from now on, and it remains to be seen what will happen next," said Gaspar.

He noted that members of the Association are set to hold a meeting on Wednesday. 

"We mentioned that we are considering to stage a protest, because we gave our trust and waited for them to give us information. If what we have been told is true, that things are moving in the right direction, I believe that the members will be satisfied. But, we will have to wait and see the voting results. I hope that in a week or two, the Ministry will provide more information. Unfortunately, summer holidays have already started. We don't have time to wait. If the entire membership votes that they are unsatisfied, I assume that we will protest," Gaspar stressed.

Ministry of Health Spokesperson Berna Sherifovska said that during the meeting with representatives from the Association, they discussed the previous work of the Ministry and the expert group responsible for solving the problems faced by patients with cystic fibrosis.

"This commission was not formed until now. After it was set up, it worked hard on finding a long-term and systemic solution for cystic fibrosis patients. The expert commission so far have prepared a treatment protocol for the patients," Sherifovska said, adding that the protocol was prepared in accordance with global standards.

In response to a reporter's question, Minister Mexhiti said that concrete steps are taken regarding cystic fibrosis patients.

As the Minister noted, patients will be accommodated in a new clinic at Kozle and will no longer be reassigned to the Children's Pulmonology Clinic or the Adult Pulmonology Clinic.

"We are nearing the end of all preparations, and we already have a protocol, which we did not have before. We have a Commission, a positive response from the Health Insurance Fund, and now I have a meeting with the Cystic Fibrosis Association where we will be slowly resolving the issue. We will provide a modern clinic for them, which will soon be renovated," Mexhiti pointed out. ssh/nn/

Photo: MIA, MIA archive