The We Can’t Wait campaign started at the end of the Covid lockdown. CCNZ, through our National IBD Working Group, had been meeting regularly with Pharmac for over a year.

We were frustrated by the lack of progress in getting new medications funded, so made the decision to present a petition for funding of ustekinumab (Stelara) to Parliament.

The petition was written and a steering committee was formed. Members included Professor Richard Gearry from Christchurch, co-chairs of the IBD nurses group of the NZ Nurses Organisation, Marian O’Connor and Jacqui Stone, Dr. James Fulforth, gastroenterologist from Waikato, Dr. Malcolm Arnold, President of the NZSG, Belinda Brown, CCNZ Operations Manager, and me.

We then launched an aggressive media campaign and a website for the petition, www.wecantwait.nz, was created. The media campaign was hugely successful, resulting in extensive coverage on the evening news and in several publications.

Unbelievably, in less than two weeks over 20,000 people signed the petition. That number soon grew to 30,000.

With those 30,000 signatures in hand, close to100 people braved the wind in Wellington on 2 December. We met at Civic Square to march to Parliament, where David Seymour, leader of the ACT party, agreed to receive our petition. Mr. Seymour has long been advocating for a review of Pharmac, noting its failure to consider the quality of life of New Zealanders in its decisions.

At Civic Square directions for the march were outlined. More importantly, people met, talked, and exchanged stories. The excitement was palpable.

Then, with placards in hand and loudly chanting “WE CAN’T WAIT”, we made our way to Parliament. Lampton Quay, Wellington’s main boulevard, was cordoned off for the march. The press monitored our progress as several bystanders cheered us and photographed the event. Many joined in as we proceeded to the Cenotaph in front of Parliament.

Along the way we stopped in front of Pharmac’s offices on Mercer Street. We were met by Sarah Fitt, Pharmac’s CEO, and its Board Chair Steve Meharey. They respectfully listened to why we were petitioning. We, in turn,  listened as they told us they were aware of our petition and were working on getting the medication approved. Sarah told us that she read each and every patient story that was sent to her and was deeply moved by them. Sarah and Steve Meharey then joined us for three minutes of silence in support of those who are desperately hanging on, waiting for funding.

After regrouping at the Cenotaph we marched to the steps of the Beehive where several media outlets were waiting. We were met by David Seymour and Brooke Van Veldon, leaders of the ACT party. Our group was addressed by Mr. Seymour, followed by our own speakers: IBD nurse leader Marian O’Conner and patients Jessica Port, Haylee Greer, Belinda Brown, and Stan Nikitopoulos. Malcolm Mulholland, Chair of Patient Voice Aotearoa then spoke and read an impassioned address written by Professor Richard Gearry.

Unexpectably, MP from Dunedin Michael Woodhouse then addressed the group, telling us he understood and supported our petition, sharing the fact that he has Crohn’s disease himself.

I then presented the petition with over 600 pages of signatures to Mr. Seymour who, with Deputy Leader, Ms. Van Velden, carried it to the House.

News of the petition was broadcast on both major evening news channels.

While this campaign is by no means over, the march, by all estimates, was incredibly successful. Those who participated should feel proud of what we achieved. Our petition now sits in Parliament and our collective voice that WE CAN’T WAIT has been heard. However, we all need to keep the pressure on Parliament and Pharmac until the care we are entitled to in New Zealand is on par with the rest of the world.