Thousands of people are backing a petition to improve the lives of hundreds of New Zealanders with Crohn's disease and ulcerative colitis.
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Leading gastroenterologists want the government to urgently fund up-to-date therapy for severe Crohn's disease and ulcerative colitis for patients for whom all other treatments have failed.
The organisation Crohn's and Colitis NZ launched the petition this week, which has been backed by nearly 200 health professionals and garnered more than 19,500 signatures.
New Zealand has the world's third highest rate of inflammatory bowel disease and more than 20,000 New Zealanders live with Crohn's or colitis disease.
The petition calls on the government to get Pharmac to fund a medication called ustekinumab, which was approved by Medsafe in early 2018 and has been given high priority by Pharmac's gastroenterology sub committee, but has not been funded by Pharmac.
It is one of two effective but unfunded treatments for people with severe Crohn's and Colitis who have failed to respond to medications available in New Zealand, along with and vedolizumab, which is awaiting Medsafe registration.
Despite there being funding in Australia and throughout the Western world, gastroenterologists and specialists treating these patients said New Zealand was behind the eight ball and found it 'outrageous' and 'disgraceful' and believed patients 'would be better off having cancer'.
Symptoms of severe Crohn's and colitis include frequent, urgent, bloody bowel motions, severe chronic abdominal pain, abscesses, and inflammation in the anal area.
IBD also costs New Zealand an estimated $245 million in healthcare costs and lost productivity.
Young adults in particular are affected, with onset occurring typically between the ages of 15 and 35.
Otago nurse Dana Smith was declined a one off exception to use ustekinumab. She said she was, ironically, told it was "better if the drug was funded to a group of people suffering with the disease rather than just one person."
"Rushing to the bathroom.. having to go to the toilet 20 times a day passing diarrhoea, blood ... being fatigued. I lost about 10kg, wasn't able to eat. It was just awful."
She said it was a "miserable" way to live, so she made the tough call to have surgery to remove her colon, and now had minimal symptoms.
After surgery, many patients like Smith must live with a permanent ostomy (bag).
"It would have been nice to have the option of the biologic drug," she said.
"I want to advocate on behalf of others so they can have a choice ... not everyone responds well to surgery and it is life changing ... it took me months to tell my partner about my ostomy.
"I would hate for them to go through something so heartbreaking because there wasn't a choice for them," she said.
Dr Richard Gearry, a leading New Zealand IBD researcher, said that treatment options for New Zealand patients were severely limited.
"New Zealand funds only one class of the so-called biological therapies, while other classes of these medications are commonly available throughout the world. If patients fail to respond to the limited options, their only recourse in New Zealand is surgery, with potentially life-altering impacts."
Most people are diagnosed in childhood, their teens or early adulthood, and suffer with these illnesses their entire lives. Children in particular are impacted in their most formative years.
NZ Society of Gastroenterologists president Malcolm Arnold said a recent survey of its membership revealed a sense of desperation and anger among doctors treating patients with severe Crohn's and colitis, calling the lack of availability of treatment "hopeless", "terrible", and "next door to criminal".
"The tragedy is that severe Crohn's and colitis can be treated, giving patients the possibility of normal, productive and fulfilling lives. Instead we're condemning them to suffer in silence, with a life of chronic pain and potentially life-altering surgery with profoundly isolating social and psychological impacts. For us as medical professionals, this situation is deeply distressing," Dr Arnold said.
The chair of the Crohn's & Colitis NZ Charitable Trust, Dr Richard Stein, said funding the drug would be life changing for many people.
"Cost can't be an issue, as the cost of ustekinumab is comparable to the currently funded biologics. The irony is that many patients who fail to respond to the current treatments remain on them at twice the recommended doses, exceeding the costs of the medication we need," Dr Stein said.
When asked about whether the life changing drug could be funded this year, Pharmac's medical director Ken Clark said it was possible, "but with every medicine we consider we have to go through a careful and robust process in terms of what we can and cannot fund".
Dr Clark said the Pharmac board would take into account the petition and support for the new drugs.
"I can promise you that we will do all we can to fund these medicines ... as a doctor I am deeply sorry that people continue to suffer with these conditions," he said.