From the Chair - Chairman's Report.

It has been a difficult year for many of us. The COVID pandemic has interrupted our lives in so many ways. It has caused endless worry among those on immunosuppressant medications and has affected our access to the health care system. We are experiencing delayed procedures, long waits in ED waiting rooms, and GP’s are finding it difficult to keep up with the demand for their services.

On top of all this, we still are waiting for new medications like Stelara to be approved and we do not know what lies ahead as our DHB’s are disestablished and Health NZ takes over.

Despite all these uncertainties, we can count many successes since our last newsletter. The government’s review of Pharmac was released and recommended many changes in how the agency works. The very first sentence of the official document reads:

“It was the stoicism of the young woman who… had dragged herself out of bed to attend a meeting with me as head of the Pharmac review, that simply took my breath away. She was speaking on behalf of Crohn’s disease sufferers.”

Our celebration of World IBD Day was held at Parliament in May. It was sponsored by MP Brook Van Velden and attended by several Members of Parliament. Along with the countless other attendees, they were sincerely moved by our video “IBD Has No Age” and the over 100 submissions from our community describing the impact of IBD on their lives. It was at this event that the Mayor of Wellington met our Youth Ambassador, Nicole Thornton, and reached out to arrange a meeting at City Hall to discuss how the City of Wellington can support her “I Can’t Wait” campaign.

The media attention surrounding our petition for a paediatric IBD Clinical Nurse Specialist at Starship has attracted a potential donor to fund the position. Camp Purple Live is currently being organised for the 90 children and teens who have registered to attend in January. Our 12 support groups around the country continue to grow as has general awareness of IBD in New Zealand; there are now very few Kiwis who are not aware of the challenges of people with Crohn’s and colitis. Talking about these diseases and taking them out of the closet has become commonplace.

As a community, there is so much we have achieved. Thank you!