On 2 December 2020, David Seymour, leader of the ACT party, received our petition asking Parliament to fund ustekinumab. The petition has over 30,000 signatures and now sits with Parliament’s Petition Committee who will determine its fate.
The seven-member committee can act on the petition themselves, they can pass it on to the Health Select Committee for further consideration, or the petition can just sit with no further action.
I have sent letters to all the committee members explaining why funding of ustekinumab is so important. I have made two requests for face-to-face meetings to discuss the issues and answer any questions. All the committee members were sent copies of our book of patient stories. To date, only one committee member has responded, but expressed strong support for further discussion.
We, of course, would like to see more action by our representatives in Parliament. However, even if the petition does not move forward, it has served its purpose. The general public is aware of our dire need for the medication, the petition has received extensive media coverage, and we have made it very clear to Pharmac that their delay in funding ustekinumab is compromising people’s quality of life.
The petition has also found us partnerships with other organisations such as Patient Voice Aotearoa and Rare Diseases New Zealand with whom we share common goals. And, perhaps most importantly, it has shown the power of us coming together as a collective voice.
CCNZ is by no means stopping its efforts. The seven-member committee that worked on the petition has a strategy to continue its pressure on Pharmac and to ensure that the government’s current review of the agency does not just give it a rubber stamp of approval.
We will keep everyone informed of our plans and progress and update you on our social media pages. Special thanks to our committee members who have worked so hard on the petition and ongoing plans: Professor Richard Gearry, IBD nurses Marian O’Conner and Jacqui Stone, Belinda Brown, and Drs. Malcolm Arnold, James Fulforth, and Richard Stein.