Pharmac looking to fund ulcerative colitis, Crohn's medicine ustekinumab following four-year fight

Pharmac is looking to fund life-changing medicines for Kiwis fighting Crohn's disease and ulcerative colitis.

The news follows a four-year fight for sufferers, but for some, the damage is already done.

At just 28 years old, Eden Standing has already faced the fight of her life. There's been unexpected blood loss, debilitating pain, and her organs have been cut up - sometimes removed - during emergency surgery. 

"I had to wear a bag on my tummy," she said.

But it all could've been avoided. Medsafe approved the life-changing ulcerative colitis and Crohn's medicine ustekinumab back in 2018.

Doctors and sufferers marched on Parliament two years later to get it funded by Pharmac but, until now, nothing.

Now, finally, there's some light at the end of the tunnel because the therapy could soon be funded for others.

"We've recently reached a provisional agreement with the supplier, Jansen, so we're now at the point of consulting on the funding of this medicine," Pharmac chief executive Sarah Fitt said.

Pharmac said approval would benefit 500 people with inflammatory bowel disease (IBD) in the first year, then up to 1500 after three years.

"For both of these medicines, we would aim for them to be listed from February 1 next year," Fitt said.

Ustekinumab is one of several medicines the state drug-buying agency is keen to fund, but it all comes down to supplier negotiations and having enough money.

It's a funding conundrum Crohn's and Colitis NZ chief executive Belinda Brown said is longing for a cure.

"We need more medications funded in New Zealand, not just for IBD, for all New Zealanders that are struggling daily with cancers, rare diseases, and things like that," Brown said.

So she's challenging the Government to help more Kiwis live life and avoid the knife. 

"Yep, I missed the Bon Jovi concert because I was in hospital having surgery," Brown said.

The prayer for those living with IBD? That Pharmac's consultation ends on a high note.