Tears of joy at funding for CF drug

Hugs, smiles, cake and getting “the best Christmas present ever”.

Cystic fibrosis sufferers are celebrating after Pharmac announced funding of the “miracle drug” Trikafta is proposed to start on April 1.

Cystic fibrosis is an ultimately terminal condition that produces thick and sticky mucus and mainly affects a person’s lungs and digestive system. Trikafta treats its underlying cause but at $330,000 per year, the drug was out of reach for many families as it had not been publicly funded in New Zealand.

On Sunday, Pharmac said it had reached a provisional agreement with medicine supplier Vertex to fund the drug and it was initiating a consultation on its funding for people aged 6 and older with cystic fibrosis who met certain eligibility criteria.

Tauranga woman Jessie McKay, who has cystic fibrosis, said she celebrated with her family with a cake and candles after the announcement.

The 21-year-old said her days were “long” made up of working full time and having treatments.

But once she starts taking Trikafta, life would be “such a breeze”, she said.

“The main thing that it was affecting was my goals. I couldn’t go and travel without having to take an extra whole suitcase of medication.

“I have so many plans that I can actually do. I want to travel and go places and it’s just going to be so much easier now.”

Rotorua mother Natalie Wineti, who has cystic fibrosis, said the announcement left her and her whā nau “in tears” as she never thought the day would come when Trikafta would be funded.

“My husband and I . . . we were literally planning a future in Australia. We’ve been living in so much uncertainty,” the 38-year-old said.

Wineti, who was told in October to consider getting a lung transplant due to her condition, said she would no longer have to go through with this.

“I won’t have to uproot my whā nau and make that move to Australia. It means that I can stay in the job that I love. It means that I’ll finally have a quality of life.

“That is the best Christmas present ever . . . I’ve got a smile from ear to ear.”

Vertex Pharmaceuticals said more than 360 New Zealanders with cystic fibrosis would have funded access to Trikafta under the agreement.

A company spokesperson said it was a “significant milestone” in ensuring they received “timely and sustainable” access to Trikafta.