Pharmac under fire over ‘inhumane’ funding decisions affecting severe inflammatory bowel disease patients

A leading expert on severe inflammatory bowel disease has criticized Pharmac for its “inhumane” decision to refuse to fund more treatment options for patients.

The government agency recently decided to suspend funding for more drugs for the treatment of severe inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis, for patients who have failed with all other funded treatments.

His decision leaves those who suffer from it, many of whom are children and young adults, facing lives of severe pain, disfiguring surgery and social isolation, says Professor Richard Gearry.

In an open letter to Prime Minister Jacinda Ardern, Gearry, director of the department of medicine at the University of Otago in Christchurch, calls for an urgent investigation into the agency’s “indefensible” decision, saying that Pharmac’s model is “deeply flawed. “.

“… You should be aware that this taxpayer-funded government agency is failing
in its core functions, and urgently needs to be independently investigated and held accountable, “he writes.

Inflammatory bowel disease is a term that encompasses both Crohn’s disease and ulcerative colitis. They are chronic, long-lasting, and incurable diseases that are unpredictable in diagnosis, disease course, and treatment.

Symptoms include abdominal pain, diarrhea, rectal bleeding, and weight loss.

“The drugs we urgently need are conventional treatments funded throughout the Western world, in 37 countries, but not in New Zealand,” he writes.

Gearry says he and Dr. Malcolm Arnold, president of the Gastroenterology Society of New Zealand, recently met with senior executives at Pharmac to discuss the agency’s decision.

At the meeting, which was also attended by Pharmac deputy chief medical officer Dr. Peter Murray, Gearry says he was “astonished” by the pharmaceutical agency’s lack of knowledge of severe IBD.

Gearry said Pharmac did not have data on the most important current treatment costs for IBD patients and had little knowledge of current direct health costs for IBD patients who do not respond to conventional treatments.

Pharmac even asked Gearry and Arnold if they could provide the relevant data.

“For many years I had read and believed Pharmac’s spin on the great job it does in using data and difficult negotiations to improve access to medicines for New Zealanders,” Gearry writes.

“However, having interacted with Pharmac staff on this specific issue, I am ashamed to have accepted Pharmac’s decisions in the past.

“The suggestion that we need to generate data for Pharmac to do its job is just weird.”

Gearry’s letter to the Prime Minister has been personally endorsed by 105 medical professionals who work with patients with Crohn’s disease and colitis.

A petition launched to fund a drug called ustekinumab, which may offer some relief to thousands of IBD patients, has already received about 30,000 signatures.

But Pharmac’s chief medical officer, Dr. Ken Clark, says Pharmac has not refused to fund ustekinumab or vedolizumab, another drug that may help.

“We have received and evaluated funding requests for both ustekinumab and vedolizumab,” it said in a statement.

“Ustekinumab is registered with Medsafe for the treatment of ulcerative colitis. Vedolizumab is not currently registered with Medsafe, but we know that a request has been sent to Medsafe for evaluation.

“We have compared and ranked them with other drugs that we would like to fund.”

Pharmac already funds several drugs used in the treatment and management of IBD, including steroids, amino salicylates, drugs that suppress the immune system, and biologics, including infliximab and adalimumab, Clark said.

“While we recognize the challenges that patients and their whānau face, and their understandable desire to try new treatments, our job is to analyze all the evidence and make a decision that is in the interest of all New Zealanders,” Clark said.

“The potential investment opportunities in new drugs will always exceed the budget that Pharmac has available.”

Pharmac would continue to make the best decisions it could, expanding the treatments available to all New Zealanders based on a strong, evidence-based approach, he said.

“My Crohn’s disease was so bad I was bedridden”

Kate Montgomery’s symptoms were so severe that she spent an average of three months in the hospital each year between 2011 and 2015.

But she is one of thousands of people who want Pharmac to fund drugs that could improve their quality of life.

The debilitating disease left her bedridden for four particularly difficult years, before she underwent a permanent ileostomy (a procedure to create an ipenium in the abdomen, creating a stoma through which digested food passes) after 2015.

By then, he had already undergone four intestinal surgeries, including a partial and then complete colectomy (which removed the entire colon), as well as a temporary ileostomy in 2010.

“While I have already undergone surgery to have an ileostomy, I still have many other symptoms that affect my quality of life, these symptoms have not been alleviated with currently available medications and could be improved with medications that are not currently available in New Zealand, “he says.