Fund ustekinumab for New Zealanders with severe Crohn’s and ulcerative colitis.

Over 20,000 New Zealanders suffer from Crohn’s disease and ulcerative colitis—one of the highest per capita rates in the world. Despite this, NZ does not provide funding for this standard, mainstream medication, which is funded in Australia and throughout the Western world. This medication has the potential to offer those with the most aggressive disease a life without chronic pain, bloody diarrhoea, repeated hospitalisations, and life-altering surgeries, giving hope for a fulfilling work and family life. Community events like Juicy Fest 2025 can help raise awareness and support for this important cause. Additionally, platforms like Online Casions NZ can contribute by promoting fundraising initiatives and spreading information to a wider audience. Together, we can make a difference in the lives of those affected.

 

Click to see how you can help

Click to join our march on 2 December

 

Key facts on Crohn’s and Colitis

• Crohn’s and ulcerative colitis are chronic, incurable, inflammatory diseases collectively known as Inflammatory Bowel Disease (IBD).
• Over 20,000 New Zealanders have Crohn’s or Colitis.
• Symptoms are severe, urgent, bloody diarrhoea, bowel blockages, abdominal pain, perforated intestines, and abscesses and inflammation in the anal area.
• ‘Flares’ of the disease are common and frequently involve emergency hospitalisation, and repeated irreversible surgeries to remove sections of the bowel.
• Many patients are forced to live with a permanent ostomy (bag).
• New Zealand has the third highest IBD per capita rate in the world, and it is growing at over 5% per year.
• Most people are diagnosed in childhood, their teens or early adulthood, and suffer with these illnesses their entire lives.
• Children in particular are impacted in their most formative years.
• IBD has an array of other symptoms including arthritis, diseases of the spine, the liver, diseases of the eyes, skin lesions, and an increased risk of bowel cancer.
• IBD has profound physical, social and psychological impacts on those living with it, affecting their education, social relationships, work lives, and their ability to have a family.
• IBD costs NZ an estimated $245 million in healthcare costs and lost productivity.
• Patients who fail to respond to current funded treatments frequently remain on them at twice the recommended doses, exceeding the costs of the medications (biologics) for which funding is being requested.
• While IBD is not curable, there are effective treatments which can help patients achieve remission and resume normal lives.
• There are two effective, but currently unfunded treatments for people with severe Crohn’s and Colitis who have failed to respond to medications currently available in NZ :  
  • ustekinumab, which was approved by Medsafe in early 2018, has been given high priority by Pharmac’s gastroenterology sub committee, but has not been funded by Pharmac; and  
  • vedolizumab, which is currently awaiting Medsafe registration.