In June 2020, tired and frustrated waiting for a decision by Pharmac to fund the desperately needed medication ustekinumab (Stelara), a CCNZ subcommittee was formed to petition Parliament to directly fund the drug.

The committee worked tirelessly over the next few months organising the campaign. There was extensive media coverage, including several spots on the evening news and opinion pieces in the press. Over the next two months, over thirty thousand people signed a petition for Parliament to fund ustekinumab, a medication which should have been funded years ago.

On 2 December 2020 over a hundred people marched from Civic Square in Wellington to the steps of Parliament to present the petition, stopping along the way at Pharmac headquarters to engage its CEO and Board Chairman. Amidst TV cameras and several reporters, the petition was received by MP and ACT leader David Seymour who spoke of the urgent need to review Pharmac’s processes. Other speakers included IBD nurse Marian O’Connor, Dr. Richard Stein, and Malcolm Mulholland of Patient Voice Aotearoa.

The petition sat with Parliament’s Petitions Committee for the next several months as our country grappled with the threat of Covid. In June 2021 Dr. Stein was invited to make a written submission in support of the petition, followed by an oral submission in front of the entire committee last month. Also giving testimony were Professor Richard Gearry of Christchurch, Dr. Zoe Raos, current President of the NZ Society of Gastroenterology, and Taranaki IBD nurse Marian O’Connor. Their testimony was live-streamed and can be viewed on the Petition Committee’s Facebook page.

On 29 November 2021, Parliament’s Petition Committee issued their recommendations to the House of Representatives. They chose not to progress the petition, taking the position that Parliament should continue its “hands-off” policy when it comes to medication funding and wait for the Pharmac Review Panel’s final report, due out in February 2022.

While on the surface these results are disappointing, they come as no surprise. Parliament understandably does not want to get involved in deciding which medication to fund. But if Parliament does not take a stand, who should? Pharmac is underfunded and it is Parliament who dictates their budget. It is up to us and our sister NGOs to change the status quo.

Was the petition an exercise in futility? Definitely not! By bringing this debate into the public domain, we have raised awareness and started important dialog. The current review of Pharmac is a direct offshoot of our efforts. As an organisation, CCNZ will continue to strive to make adequate funding of health care a priority in New Zealand.

Members of the CCNZ petitions subcommittee include Professor Richard Gearry from the University of Otago, Christchurch, Co-Chairs of the IBD Nurses Group of the NZNO, Jacqui Stone and Marian O’Connor, CCNZ Chair Dr. Richard Stein, Dr. Malcolm Arnold, past President of the NZ Society of Gastroenterology, and Waikato gastroenterologist Dr. James Fulforth.