The lack of treatment for those with severe inflammatory bowel disease is being described by experts as disgraceful.
New Zealand has the third-highest rate of the disease in the world, but there are only two funded drugs here to help treat it.
There are thousands of Kiwis with Crohn's disease or ulcerative colitis; both are types of inflammatory bowel disease.
Danielle Barber is one of them. She was diagnosed with Crohn's disease when she was 19 years old.
She tried both funded medications, both of which didn't work, so her only option left was life-changing surgery.
She was then fitted with a permanent ostomy bag, at just 20 years old.
"There's not a day that goes by when I can't not think about it, it's in every decision I make, it's in the clothes I wear, the things I do," Ms Barber told 1 NEWS.
"The biggest thing that it's affected for me, I've decided not to have children."
Now 23, Ms Barber, along with 20,000 other Kiwis affected by the disease and leading New Zealand gastroenterologists, are petitioning the Government for access to at least two new treatments.
Professor Richard Gearry, a Christchurch-based gastroenterologist, says these drugs would be life-changing for sufferers of inflammatory bowel disease.
"These drugs would prevent people being hospitalised, prevent surgery, would prevent not being able to finish their schooling," he says.
"These people want a normal life. They don't want anything special, they just want a normal life."
The existing drugs were funded in 2007 and 2009, meaning there have been no new ones introduced to New Zealand in 11 years.
Pharmac has acknowledged the effectiveness of the new drugs, but won't yet commit to delivering them.
"When we are able to fund them, they are worthy of funding, I'm afraid I can't give you a timeline, but they are, both of those medicines, at the forefront of our thinking at present," Pharmac's medical director Dr Ken Clark says.
The petition is aiming to get at least 20,000 signatures to give sufferers a better chance to have a normal life.
The petition can be signed online here .
SHARE ME