Families across New Zealand are growing increasingly frustrated as Pharmac delays a decision on approving the gene therapy Luxturna, a potentially life-saving treatment for children with a rare genetic eye condition. Advocates argue the delay is putting young patients at risk, as the treatment could prevent irreversible vision loss if administered early. The therapy, which targets mutations in the RPE65 gene, has shown remarkable success in restoring sight in clinical trials, yet Pharmac has not yet determined whether it will be funded for use in New Zealand. The condition, known as Leber’s Congenital Amaurosis (LCA), affects approximately 200 children in the country. Without treatment, these children face a future of complete blindness. Parents have described the emotional toll of watching their children struggle with everyday tasks and the anxiety of waiting for a decision that could change their lives. Pharmac has acknowledged the urgency of the case but has cited cost-effectiveness as a primary concern. The drug, developed by Spark Therapeutics, comes with a price tag of around $1.2 million per treatment. Pharmac is currently reviewing whether the long-term benefits of the treatment outweigh the initial costs, particularly in the context of New Zealand’s publicly funded healthcare system. Health advocates and ophthalmologists are calling on the government to intervene, arguing that the unique nature of gene therapy—offering a one-time treatment with lasting effects—makes it a worthwhile investment. Some have suggested a special funding pathway for rare diseases, similar to those used in other OECD countries, to expedite access to critical treatments like Luxturna. The delay has sparked a national conversation about the balance between fiscal responsibility and patient care. Many are questioning whether New Zealand’s healthcare system is prepared to adapt to the rapidly evolving landscape of medical treatments. As the families continue to wait, the hope remains that a decision will be reached soon—one that prioritizes the health and future of these children.