Skopje, 3 May 2023 (MIA) — The Cystic Fibrosis Association's fight for the medication Trikafta to be available through the national health care system will continue until the last patient receives it and until all newborns with cystic fibrosis can receive their therapy without having to fight for their chance to be healthy, according to association members who protested in front of the Ministry of Finance on Wednesday.

"We talked to their budgeting department. We said what we demand: a systemic solution for providing the medication without delay," Cystic Fibrosis Association president Fiki Gaspar said after meeting with officials.

"They responded that the government on April 25 had decided to procure the medication for those in severe and moderate condition. They estimate 18 other patients would start receiving the medication in addition to the 12 who are already taking it."

Gaspar said the association members requested that all people with cystic fibrosis should have access to Trikafta through the national health care system and "not only 18 patients, or 20, or however many they consider to be in severe and moderate condition."

"We know full well this disease is unpredictable and it can quickly progress from a mild stage to an intermediate or severe, and even terminal stage," he said.

"We already lost one patient because of such delays and we insist on a systemic solution, and not a solution of emergency imports [of the medication]," he added.

Gaspar said the Cystic Fibrosis Association would continue to put pressure on health authorities and organize more protests if necessary. Their goal was to remain visible "so they don't forget us," he said.

He also said some progress had been made.

"But we are not completely satisfied. We would have been if this [new procurement of Trikafta] applied to all patients and was a long-term solution," Gaspar pointed out.

"They told us they didn't need refinancing and they already had the funds, through some new budget for this year, which was bigger than last year," he said.

"Importantly, they said they could cover all patients with this. Which means we would be spared from waiting for refinancing, since they told us they had the funds.

"I think it's just a matter of willingness and organization. Those 18 and the 12 who are already taking the medicine, according to their registry, are moderately and severely ill. But the disease can progress very quickly," Gaspar said.

The Cystic Fibrosis Association's second president, Ivana Atanasovska, reiterated their request that all people with the disorder should have access to Trikafta.

"Thirty years, we have waited for this kind of therapy to be invented," Atanasovska said. "Now that it is available, when it does exist, there is no reason that it should not be available to us."

She said there were between 130 and 140 people with cystic fibrosis in North Macedonia.

Atanasovska also noted that the drug was approved for anyone over two years of age in the US, whereas in North Macedonia it was approved for children over six years.

Expressing hope that younger kids would be eligible soon, she said the earlier therapy was started the less the disorder would progress and damage their bodies.

With therapy, she said, "they may not have any damage whatsoever to their internal organs as we do." mr/