Improved quality of life and better health for people with haemophilia A

Stories Kauneke Update

"This will mean less joint pain, fewer injections, and it will help keep people with haemophilia out of hospital.”

Karl Archibald is smiling. He has a beard and brown hair. He is wearing a blue shirt..
Karl Archibald

That’s the reaction of Deon York, the Chair of Haemophilia New Zealand, to Pharmac’s decision to widen access to emicizumab (branded here as Hemlibra) for the treatment of haemophilia A without factor VIII inhibitors.

“It’s the most significant change to care and treatment for people with haemophilia in nearly quarter of a century,” says York, who also lives with haemophilia A.

Karl Archibald, Vice-Chair, says “having access to Hemlibra has improved my quality of life, enabling me to do more with my young family, and be active."

Haemophilia A is a hereditary life-long bleeding disorder caused by a deficiency of factor VIII, which impairs the body’s ability to make blood clots. It causes prolonged and spontaneous injury-related bleeding. Untreated, people with severe haemophilia A can experience significant health problems.

Pharmac’s Director, Pharmaceuticals, Geraldine MacGibbon, says emicizumab prevents or reduces the frequency of bleeding episodes in adults and children.

“Previously, people with severe haemophilia A needed regular intravenous infusions of factor VIII, often multiple times per week. Emicizumab is given as a subcutaneous injection which means that people with haemophilia A, or their caregivers, can administer the treatment themselves.”

She says the decision to widen access, which took effect in October 2023, is an example of Pharmac’s determination to make the best use possible of the medicines budget for the benefit of New Zealanders.

York says increased access to emicizumab will mean less joint damage over time for people with haemophilia A and will help improve their quality of life.

“More people will be able to manage their chronic pain so that they can then hold down a job, have a family, and participate fully in their communities,” he says. “It’s going to make a big difference.”