Not a day goes by that I do not give thanks for living in New Zealand. Having worked as a doctor in the States for over twenty years, practising in New Zealand was like breathing fresh air for the first time.
New Zealanders do not have to choose between buying groceries for their families or paying for their medications. They don’t worry that an admission to the hospital could land them in bankruptcy court. Medical coverage cannot be suspended by an insurance company because someone has reached their coverage limits.
But we face other problems. Anyone with IBD knows about long waits for appointments and procedures. We are acutely aware that we don’t have enough medical specialists and many of us know that there is no funding for newer, more effective medications that could turn our lives around.
Collectively, we have a voice that is just starting to be heard. We need to pressure our representatives in Parliament to allocate more funds to give us care that is in line with most other western countries. We need to write to our District Health Boards to allocate more funding for IBD doctors and nurses and for better access to endoscopic procedures. We need to raise awareness of IBD through social media and the press.
The IBD National Care Working Group, under the leadership of the Hon. Peter Dunne, was established only last year and is funded by CCNZ to advocate for these changes. This month the group will be meeting with the Shadow Minister of Health to press our agenda - the creation of national guidelines for the treatment of those with IBD, funding of critical new medications, the creation of a national database of IBD patients, and better access to IBD doctors and nurses.
This should be a year of change and the next twelve months should be especially exciting. Planning for our sixth annual Camp Purple Live is in full swing and we are in the early planning stages of our first annual young adult retreat in mid 2020.
In November, Ally Bain, who successfully advocated for a law for toilet access in the States when she was only fourteen (known throughout the US as “Ally’s Law”) will be coming to NZ. Ally, now a lawyer for the American Civil Liberties Union and Nicole Thornton, whose petition for a similar law in NZ is well known, will be speaking at the annual scientific meeting of the NZ Society of Gastroenterology.
I would like to conclude with a thank you to all our generous supporters, our committed nine member Board of Trustees, and all of the volunteers who have made CCNZ the organisation it is today. A special thank you to Viv Gurrey for all her contributions to CCNZ over the past 36 months. She will be missed.