A leading expert in severe inflammatory bowel disease has criticised Pharmac for its "inhumane" decision to refuse to fund further treatment options for sufferers.
The government agency recently decided to halt its funding of further drugs for the treatment of severe inflammatory bowel disease (IBD), which includes Crohn's disease and ulcerative colitis, for patients who have failed every other funded treatment.
Its decision leaves sufferers, many of whom are children and young adults, facing lives of severe pain, disfiguring surgery, and social isolation, Professor Richard Gearry says.
In an open letter to Prime Minister Jacinda Ardern, Gearry, the head of the department of medicine at the University of Otago in Christchurch, calls for an urgent inquiry into the agency's "indefensible" decision, saying Pharmac's model is "deeply flawed".
"... You need to be aware that this taxpayer-funded government agency is failing
in its core functions, and urgently needs to be independently investigated and held to account," he writes.
Inflammatory bowel disease is a term which encompasses both Crohn's disease and ulcerative colitis. They are chronic, lifelong, incurable diseases that are unpredictable in diagnosis, disease course and treatment.
Symptoms include abdominal pain, diarrhoea, rectal bleeding and weight loss.
Pharmac has not funded any new drugs to treat IBD since 2011, Gearry said, leaving New Zealand well behind other countries in treating symptoms of the debilitating disease.
"The drugs we urgently need are mainstream treatments funded throughout the Western world – in 37 countries – but not in NZ," he writes.
Gearry, says he and Dr Malcolm Arnold, the President of the New Zealand Society of Gastroenterology, recently met with Pharmac senior executives to talk through the agency's decision.
At the meeting, also attended by Pharmac's deputy medical director Dr Peter Murray, Gearry says he was "astounded" by the drug agency's lack of knowledge on severe IBD.
Gearry said Pharmac had no data on the most important current treatment costs for IBD sufferers and had little knowledge on current direct health costs for IBD patents who don't respond to conventional treatments.
Pharmac even asked Gearry and Arnold if they could provide the relevant data to it.
"For many years I had read and believed the Pharmac-generated spin about the great job it does using data and tough negotiations to improve access to drugs for New Zealanders," Gearry writes.
"However, having interacted with Pharmac staff over this specific issue, I feel embarrassed that I accepted Pharmac decisions in the past.
"The suggestion that we need to generate data for Pharmac to do its job, is simply bizarre."
Gearry's letter to the Prime Minister has been personally endorsed by 105 medical professionals who work with Crohn's and colitis patients.
A petition launched to fund a drug called ustekinumab, which may offer some relief to thousands of IBD sufferers, has already received nearly 30,000 signatures.
But Pharmac's medical director Dr Ken Clark says Pharmac has not declined to fund ustekinumab, or vedolizumab, another drug that may help.
"We have received and assessed funding applications for both ustekinumab and vedolizumab," he said in a statement.
"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.
"We have compared both with, and ranked them against, other medicines that we would like to fund."
Pharmac already 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, which include infliximab and adalimumab, Clark said.
"While we recognise the challenges faced by patients and their whānau, and their understandable desire to try new treatments, our job is to look at all the evidence and make a decision that is in the interests of all New Zealanders," Clark said.
"Possible opportunities for investment in new medicines will always exceed the budget Pharmac has available."
Pharmac would continue to make the best choices it could, expanding available treatments for all New Zealanders based on a robust, evidence-based approach, he said
"My Crohn's disease was so severe, I was bedridden"
Kate Montgomery's symptoms were so severe that she spent an average of three months in hospital each year between 2011 and 2015.
But she's one of the thousands of people that want Pharmac to fund medication that might better her quality of life.
The debilitating disease left her bedridden over a particularly tough four years, before she had a permanent ileostomy (a procedure to create an ipenium in the belly, creating a stoma through which digested food passes) after 2015.
By then, she'd already undergone four bowel surgeries, including a partial, then full colectomy (which removed the entire colon), as well as a temporary ileostomy in 2010.
"While I've already had my surgery to have an ileostomy, I still have a lot of other symptoms that effect my quality of life, these symptoms have not been helped by the medications currently available, and could be helped by medications that aren't currently available in New Zealand," she says.