Open Letter to Honourable David Seymour,

Congratulations on Pharmac’s Proposed Funding for CF Treatments

On behalf of Cure Kids I am writing to warmly congratulate you on the announcement that Pharmac has moved to widen access to groundbreaking cystic fibrosis (CF) treatments including Trikafta and Alyftrek, for children of all ages, including toddlers. This is truly heartening news for families across Aotearoa who are affected by this challenging condition.

Cure Kids Founder, the late Sir Professor Bob Elliott was instrumental in extending the life of children with CF through his research and he would be so proud of this development.

For too long, younger children have faced significant hurdles in accessing these therapies, with some families having to consider relocating overseas to secure treatment.

Your leadership in highlighting the profound impact of early intervention, and the importance of giving clinicians the flexibility to prescribe based on clinical need, is especially commendable. This move signals real progress in making sure that children with CF can begin treatment as soon as it is clinically appropriate, helping prevent irreversible harm and improving long-term outcomes.

I also appreciate your emphasis on working collaboratively with the cystic fibrosis community, advocacy groups, and healthcare professionals throughout this process. This kind of partnership strengthens public confidence and ensures decisions are grounded in lived experience and evidence.

Thank you for championing this significant step toward better health outcomes for children and families living with CF. I wish you every success as Pharmac’s consultation concludes and the proposal progresses toward implementation.

Yours sincerely,

Frances Soutter CEO Cure Kids