Nic Burkin was diagnosed with Crohn's disease when she was 12, since then she has had "countless" stays in hospital and says her life is what happens when the right medication is not available.
Burkin, 35, from Hastings, is one of many involved in signing a petition to the Government to urgently fund the drug Ustekinumab for severe Crohn's disease and ulcerative colitis, (collectively known as Inflammatory Bowel Disease - IBD) for patients for whom all other treatments have failed.
The petition started by Crohn's & Colitis NZ Charitable Trust exceeded the goal of 20,000 signatures within four days, and by Sunday had reached 25,758 signatures of the new 30,000 goal.
The signatures included those of 177 leading NZ gastroenterologists, surgeons, scientists and clinical nurse specialists.
For Burkin the medication is vital.
Burkin said she lives with fatigue every day of her life, trying to function "normally", looking after her family, working, coaching sports teams, all while having "nothing in the tank" from breakfast time.
"My life is what happens when you don't have the right medication," she said.
"I have had countless stays in hospital from my teenage years onwards. Some were only a few days, other were weeks and at one point it was two months at a time.
"I have had all the procedures you can think of repeated over and over, ultrasound, CT, small bowel barium x-rays, pill cameras, gastroscopies, colonoscopies and at times blood tests done weekly.
"I was in day surgery so often that I knew all the nurses and anaesthetists by name and they knew me."
Burkin said she had never been over 50kg until she was 21 years old.
"Constant diarrhoea, bleeding, stomach pain, absolutely no energy, I was exhausted for a good nine years of my life," she said.
"I have had a bowel resection and have ended up with a "temporary" ileostomy when I was 21 (14 years ago) and still have it now.
"I have rheumatoid and Crohn's related arthritis. Daily pain in my back, neck, fingers, ankles, knees, wrists and hips.
"If we had access to decent medication, I may not have had to have my ileostomy. I still live with fatigue every day."
Richard Stein, Crohn's & Colitis New Zealand Charitable Trust chairman said Burkin's example was sadly one of many.
Stein is a consulting gastroenterologist, and currently practices in Lower Hutt, but also works at Northland and Hawke's Bay DHBs.
"It's frustrating to know that there is a medication available, is funded in Australia and 38 other countries, and is not funded in New Zealand," Stein said.
"We have been meeting with Pharmac for roughly a year, and nothing has been happening. We are doing this [the petition] out of desperation, and frustration.
"The drug has been registered in New Zealand for two years, but Pharmac keeps downgrading it to medium priority.
"I understand that Pharmac is working with a limited budget, but it's looking at dollars and cents instead of the impact the diseases have on people.
"It's really, really bad to live with."
Symptoms of IBD are severe, urgent, bloody diarrhoea, bowel blockages, abdominal pain, perforated intestines, and abscesses and inflammation in the anal area.
"Flares" of the disease are common and frequently involve emergency hospitalisation, and repeated irreversible surgeries to remove sections of the bowel.
"We are just asking to treat those people for whom the drugs aren't working, and the available medication has failed," he said.
"It's a cost-effective way, and when you factor in the cost of surgery, emergency visits, hospital stays, we know the cost of drug is a lot less.
"It is hard for us to sit back and watch our patients suffer. It's a drug that could help the few hundred people in New Zealand who are impacted.
"New Zealand has the third highest IBD per capita rate in the world, and it is growing at over 5 per cent per year."
Pharmac's medical director Ken Clark said the agency had heard from its clinical advisers, and through regular engagement with people who treated and managed patients with IBD, about the need for further treatment options.
"We meet regularly with the Crohn's & Colitis NZ and appreciate their efforts to advocate on behalf of New Zealanders with IBD," he said.
Pharmac currently funds a number of drugs used in the treatment and management of IBD including steroids, amino salicylates, drugs that suppress the immune system, and biologics, he said.
"We are aware that there are other biologic treatment options for IBD," Clark said.
"We have received and assessed funding applications for both Ustekinumab (brand name Stelera) and Vedolizumab.
"We have compared both these medicines with, and ranked them against, other medicines that we would like to fund.
"Ustekinumab is registered with Medsafe for treatment of ulcerative colitis. Vedolizumab is not currently registered with Medsafe, but we are aware that an application has been submitted to Medsafe for assessment."
Clark said possible opportunities for investment in new medicines would always exceed the budget Pharmac had available.
"Pharmac will continue making the best choices we can, expanding available treatments for all New Zealanders based on a robust, evidence-based approach."