Patients with Crohn’s disease and ulcerative colitis marched to Parliament today with a 30,000-signature petition for Pharmac to fund a medicine that would help sufferers – with National MP Michael Woodhouse speaking of his own experience with Crohn’s.
Ustekinumab is a medication that helps block inflammation and ease pain and symptoms for patients.
Woodhouse greeted the crowd, revealing he suffers from Crohn’s disease.
“I was diagnosed several years ago and I'm not the only Member of Parliament who has an inflammatory bowel disease,” Woodhouse said.
“You know what it’s like to go out to a function and the first thing you do is find the nearest toilet."
“To sit for four hours in a select committee room and have one's colleagues wonder why you keep leaving every quarter of an hour…and the pain,” he said.
Eden Leigh Standing, 26, who marched to Parliament today, was diagnosed with Crohn’s disease 10 years ago.
“I lost a lot of time at school, I lost a lot of friends, they didn't understand why I was away and why I couldn't go out with them,” Standing said.
“It’s a very lonely disease,” she said.
ACT leader David Seymour and deputy leader Brooke Van Velden received the petition.
Seymour was unaware of Woodhouse’s Crohn’s diagnosis until today.
“I think it shows how people who live with this often keep it so quiet,” Seymour said.
Professor Richard Gearry from Otago University said ustekinumab is funded in 38 other countries.
“We need Pharmac and the government to listen and grant availability to the medicines,” said Marian O’Connor, representing Crohn's and colitis nurses.
Pharmac’s Chief Executive Sarah Fitt told 1 NEWS it recognised “the need for further treatment options for IBD but are reliant on budget availability”.
Woodhouse said he understood the Health Select Committee would hold the Pharmac inquiry.
The Prime Minister said she wants the public to have confidence in the Pharmac system.
“I will always stand very strongly on the principle of political separation from pharmaceutical purchases,” Jacinda Ardern said in Parliament.