Internationally respected medical specialist slams Pharmac, urges PM to investigate

In a blistering open letter to Prime Minister Ardern, world renowned expert in Crohn’s disease and ulcerative colitis, Professor Richard Gearry, blasts Pharmac for “gross obfuscation” around their refusal to fund a desperately needed medication for people with these diseases.

He calls their decision “inhumane” and “indefensible”.

After attempts to meet with Health Minister Chris Hipkins have been repeatedly declined, he is now appealing to the Prime Minister to urgently investigate the agency’s “deeply flawed decision-making processes”.

Professor Gearry’s letter has unprecedented support from the medical community, listing personal endorsements from 105 of the country’s most respected gastroenterologists, surgeons and other medical professionals who work with Crohn’s and colitis patients.

Professor Gearry who is Head of the Department of Medicine at University of Otago, Christchurch, is an internationally recognised educator, clinician, and the author of 260 articles published in medical journals. He is on the Faculty of the World Gastroenterology Organisation IBD Guidelines Group and Chair of the International Organisation for the Study of IBD Globalization Cluster.

Citing the example of a recent meeting with Pharmac to discuss their decision, after a cost-benefit analysis, not to fund critically-needed medications to treat advanced Crohn’s disease and ulcerative colitis, Professor Gearry said he was “astounded by Pharmac’s lack of knowledge on the current direct health costs of Crohn’s and colitis patients failing conventional treatments, and to learn that Pharmac does not actually have the data on current treatment costs.

A petition wecantwait.nz to fund ustekinumab, launched by Crohn’s and Colitis NZ Charitable Trust in partnership with the New Zealand Society of Gastroenterology and the IBD Nurses Group of the NZNA, has garnered close to 30,000 signatures in less than a month. The drug is a mainstream treatment funded throughout the Western world. 38 other western countries fund he medication, including Australia, which has done so since 2015.

Without this medication, New Zealanders who fail to respond to the 15-year-old medications that are available in this country face unnecessary multiple hospitalisations and irreversible surgeries to remove sections of the bowel, often culminating in permanent stoma bags.

Professor Gearry calls on the Prime Minister, to investigate this decision and provide “justice, fairness and compassion to New Zealanders suffering unnecessarily with this terrible disease.”

Read the full letter https://crohnsandcolitis.org.nz/ and attached below.

Wednesday 30 September, 2020

Rt Hon Jacinda Ardern

Prime Minister

Parliament Buildings

Wellington 6160

Dear Prime Minister,

I am writing to inform you of deeply flawed decision‐making and gross obfuscation on the part of your drug-buying agency, Pharmac.

I understand that the Government prefers not to intervene in Pharmac’s processes and decisions on grounds of maintaining its ‘independence’, but 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.

I am writing to you because there is no other avenue to achieve justice for our patients on this matter, and all of our attempts over several weeks to engage with your Minister of Health have been declined. To ensure this issue is properly drawn to the attention of the public, we are sharing this letter with the media.

Recently Pharmac arrived at a decision not to fund any further drugs for the treatment of severe inflammatory bowel disease (IBD) in patients who have failed every other funded treatment. They regard it as not cost effective.

The drugs we urgently need are mainstream treatments funded throughout the Western world – in 37 countries – but not in NZ. There are currently five additional drugs funded to treat IBD in other countries. There have been no new drugs funded for IBD in NZ since 2011. The options for NZ patients in this situation are multiple hospitalisations, usually through the emergency department, and irreversible surgeries to remove sections of the bowel, often culminating in permanent stoma bags. Consigning people (most of whom are children and young adults) to lives with severe pain, disfiguring surgery and social isolation is unnecessary and a heavy cost to the health system.

Dr Malcolm Arnold (President of the New Zealand Society of Gastroenterology) and I met recently with Pharmac Deputy Medical Director Dr Peter Murray and other senior Pharmac executives to attempt to understand this inexplicable and inhumane decision.

We were astounded by Pharmac’s lack of knowledge on current direct health costs for IBD patents failing conventional treatments, and to learn that Pharmac does not actually have the data on the most important current treatment costs. Incredibly, they asked us if we could provide the data to them!

Despite a lengthy follow‐up description from Pharmac’s Medical Director, Dr Ken Clark, of the organisation’s costutility assessment methodology and its processes, it has become clear to me that the Pharmac model is deeply flawed. No matter what the processes are, if the data Pharmac puts into its models is incorrect with false assumptions, then the results of such models will also be flawed.

Even without counting the indirect health costs of ruined lives and lost productivity, we know that the treatments we are asking for are affordable when weighed against the current health system costs, including futile double dosing of current funded treatments (eg infliximab).

How is it that the rest of the Western world saw fit to fund these treatments, but Pharmac does not?

Does it mean New Zealanders are worth less?

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. 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. Surely it is Pharmac’s role to know how and where drugs are being prescribed in New Zealand? Surely it is Pharmac’s responsibility to ensure that the right data is entered into their models to ensure that the right decisions on drug access are made for New Zealanders?

In searching Pharmac’s website for insight into its processes, I discovered its six strategic priorities:

• enhance key functions
• medical devices
• equitable access and use
• data and analytics
• public understanding, trust and confidence
• relationships and partnerships.

In our interactions with Pharmac on this issue, it is clear these do not apply. Pharmac has failed to enhance its key functions, it denies equitable access to IBD patients (whilst those with similar inflammatory diseases have multiple funded treatment options), it asks others to generate the data that it needs and uses incorrect assumptions (even though it should have these data), it has lost the trust and confidence of the public (30,000 signatories to a petition at present www.wecantwait.nz) and has failed to engage in meaningful relationships through a lack of transparency in its dealings.

Dr Clark concluded his email to me by stating “…we believe we are all looking for the same end result – better outcomes for people with IBD.” The actions of Pharmac to date on this issue demonstrate that this is patently untrue. If Pharmac was genuinely looking for “better outcomes for people with IBD” it would acknowledge these realities and proceed actively and urgently with the processes required to fund this medicine.

I am happy to provide you with a full record of my exchange with Pharmac, and my colleagues and I are more than willing to meet with you if that would achieve meaningful progress on this matter. My views are strongly shared by the membership of the NZ Society of Gastroenterology, the NZ IBD Nurses Group, Crohn’s & Colitis NZ, and 20,000 IBD patients and their families throughout NZ. Listed below are the names of 105 colleagues/specialists who personally endorse this letter.

We are not asking you to make an exception with this case. We are asking you to investigate this indefensible decision urgently and ensure that a fair, transparent and rapid process is pursued to provide justice, fairness and compassion to New Zealanders suffering unnecessarily with this terrible disease.

Regards,

Dr Richard Gearry, MB ChB, PhD, FRACP

Professor of Medicine, University of Otago, Christchurch

Consultant Gastroenterologist, Canterbury District Health Board

Chair, International Organisation for the study of IBD Globalization Cluster

Faculty, World Gastroenterology Organisation IBD Guidelines Group

richard.gearry@otago.ac.nz

Dr Sarah Abbott

Colorectal Surgeon

Canterbury DHB

Dr Malcolm Arnold

President, NZ Society of Gastroenterology

Gastroenterologist

Canterbury DHB

Dr Nathan Atkinson

Gastroenterologist

Waitemata DHB

Dr Wayne Bai

Gastroenterologist

Waikato DHB

Professor Murray Barclay

Gastroenterologist

Canterbury DHB

Dr Juneid Beig

Gastroenterology Advanced Trainee

Waikato DHB

Dr Rachel Bergman

Gastroenterologist

Auckland DHB

Dr Jonathan Bishop

Paediatric Gastroenterologist

Starship

Auckland DHB

Dr James Brooker

Gastroenterologist

Waikato DHB

Dr Stephen Burmeister

Gastroenterologist

Waitemata DHB

Dr Michael Burt

Gastroenterologist

Canterbury DHB

Dr Rees Cameron

Gastroenterologist

Capital & Coast DHB

Dr Paul Casey

Gastroenterologist

Counties Manukau DHB

Dr Chris Cederwall

Gastroenterologist

Capital & Coast DHB

Dr Teresa Chalmers‐Watson

Gastroenterologist

Canterbury DHB

Dr Hui Chan

Gastroenterologist

Bay of Plenty DHB

Dr Simon Chin

Paediatric Gastroenterologist

Starship

Auckland DHB

Dr Adrian Claydon

Chair, NZ Advanced Training Subcommittee

Gastroenterologist

Bay of Plenty DHB

Sarah Cook, RN

Clinical Nurse Specialist IBD

Waikato DHB

Dr Rob Cunliffe

Gastroenterologist

Bay of Plenty DHB

Dr Charlotte Daker

Gastroenterologist

Waitemata DHB

Professor Andrew Day

Chair and Professor of Paediatric

Research

Paediatric Gastroenterologist

Canterbury DHB

Dr Dara De Las Heras

Gastroenterologist

Waikato DHB

Dr Graeme Dickson

Gastroenterologist

Waikato DHB

Dr Steven Ding

Gastroenterologist

Canterbury DHB

Dr James Falvey

Gastroenterologist

Canterbury DHB

Dr Paul Frankish

Gastroenterologist

Waitemata DHB

Dr Rowan French

President, NZ Association of General

Surgeons

Waikato DHB

Dr John Frye

Colorectal Surgeon

Canterbury DHB

Dr James Fulforth

Gastroenterologist

Waikato DHB

Dr Stephen Gerred

Gastroenterologist

Counties Manukau DHB

Dr Tamara Glyn

Colorectal Surgeon

Canterbury DHB

Dr Ben Griffiths

Gastroenterologist

Capital & Coast DHB

Lisa Griffiths, RN

Clinical Nurse Specialist IBD

Capital & Coast DHB

Dr Melissa Haines

Gastroenterologist

Waikato DHB

Dr Kyle Hendry

Gastroenterologist

Southern DHB

Dr Judy Huang

Gastroenterologist

Counties Manukau DHB

Dr Stephen Inns

Gastroenterologist

Hutt Valley DHB

Dr Estella Johns

Gastroenterologist

Capital & Coast DHB

Dr Sean Kelly

Gastroenterologist

Bay of Plenty DHB

Dr Clarence Kerrison

Gastroenterology Advanced Trainee

Counties Manukau DHB

Dr Afrasyab Khan

Gastroenterology Fellow Counties

Manukau DHB

Dr Bong‐Suk Ko

Gastroenterologist

Waikato DHB

Dr Jan Kubovy

Gastroenterologist

Canterbury DHB

Dr Dinesh Lal

Gastroenterologist

Counties Manukau DHB

Dr Alex Lampen‐Smith

Gastroenterologist

Bay of Plenty DHB

Associate Professor Mark Lane

Past President, Royal Australasian

College of Physicians

Past President, NZ Society of

Gastroenterology

Gastroenterologist

Auckland DHB

Dr Marianne Lill

Colorectal Surgeon

Whanganui DHB

Dr Gary Lim

Gastroenterologist

Canterbury DHB

Dr Ming Han Lim

Gastroenterologist

Counties Manukau DHB

Dr Tien Huey Lim

Gastroenterologist

Counties Manukau DHB

Dr Derek Luo

Gastroenterologist

Counties Manukau DHB

Dr Jasen Ly

General Surgeon

Waikato DHB

Dr Kirsty Macfarlane

Gastroenterology Advanced Trainee

Dr Paul Manuel

General Surgeon

Southland DHB

Dr David McGouran

Gastroenterologist

Bay of Plenty DHB

Dr Adele Melton

Gastroenterologist

Counties Manukau DHB

Lucy Mills, RN

Clinical Nurse Specialist

Counties Manukau DHB

Dr Stephen Mouat

Paediatric Hepatologist

Gastroenterologist

Starship

Auckland DHB

Dr Thomas Mules

Gastroenterology Advanced Trainee

Dr Helen Myint

Gastroenterologist

Auckland DHB

Dr Itty Mathew Nadakkavukaran

Gastroenterologist

Waitemata DHB

Dr Jeffrey Ngu

Gastroenterologist

Canterbury DHB

Marian O'Connor, RN

Co‐Chair, NZ IBD Nurses Group

Clinical Nurse Specialist

Taranaki DHB

Dr Paddy O'Connor

Gastroenterologist

Southern DHB

Dr Ravinder Ogra

Gastroenterologist

Counties Manukau DHB

Dr John Perry

Gastroenterologist

Waitemata DHB

Dr Ashok Raj

Gastroenterologist

Counties Manukau DHB

Dr Zoe Raos

President Elect, NZ Society of

Gastroenterology

Gastroenterologist

Waitemata DHB

Dr Sarah Rennie

General Surgeon

Clinical Skills Director

University of Otago

Harun Riza, RN

Gastroenterology Charge Nurse

Manager (CNM)

Counties Manukau DHB

Dr Amin Roberts

Paediatric Gastroenterologist

Starship

Auckland DHB

Dr Nicola Robson

Gastroenterology Fellow

Starship

Auckland DHB

Kirsten Rosser, RN

Clinical Nurse Specialist IBD

Canterbury DHB

Dr Charlotte Rowan

Gastroenterologist

Waitemata DHB

Dr David Rowbotham

Gastroenterologist

Auckland DHB

Dr Clare Russell

Gastroenterologist

Waitemata DHB

Dr Paul Samson

General Surgeon

Southland DHB

Dr Kurt Sanford

Gastroenterologist

Canterbury DHB

Dr Cameron Schauer

Gastroenterologist Fellow

Waitemata DHB

Professor Michael Schultz

Professor of Medicine

University of Otago

Past President, NZ Society of

Gastroenterology

Gastroenterologist

Southern DHB

Dr Anurag Sekra

Gastroenterologist

Counties Manukau DHB

Dr Sam Seleq

Gastroenterology Advanced Trainee

Waikato DHB

Dr Sriharan Selvaratnam

Gastroenterologist

Counties Manukau DHB

Dr Ahsan Siddiqui

Gastroenterologist

Canterbury DHB

Dr Nick Smith

General Surgeon

Waikato DHB

Associate Professor Catherine Stedman

Clinical Associate Professor

University of Otago

Canterbury DHB

Dr Richard Stein

Chair, Crohn's & Colitis New Zealand

Charitable Trust

Gastroenterologist

Northland & Hawkes Bay DHB

Jacqui Stone, NP

Chair, NZ IBD Nurses Group

Nurse Practitioner

Counties Manukau DHB

Dr Heidi Su

Gastroenterologist

Canterbury DHB

Dr Arjun Sugumaran

Gastroenterologist

Northland DHB

Dr Akhilesh Swaminathan

Advanced Trainee in Gastroenterology

Canterbury DHB

Dr Vivek Tharayil

Gastroenterologist

Waikato DHB

Dr Jimmy Tiong

Advanced Trainee in Gastroenterology

Canterbury DHB

Dr Marius Van Rijnsoever

Gastroenterologist

Waitemata DHB

Dr Sunny Veerappan

Gastroenterologist

Bay of Plenty DHB

Dr Christopher Wakeman

Colorectal Surgeon

Canterbury DHB

Dr Russell Walmsley

Chair, Endoscopy Guidance Group for New Zealand

Past President, NZ Society of Gastroenterology

Gastroenterologist

Waitemata DHB

Dr Henry Wei

Gastroenterologist

Counties Manukau DHB

Dr Frank Weilert

Clinical Director, Gastroenterology

Gastroenterologist

Waikato DHB

Dr Ian Wilson

Gastroenterologist

Capital & Coast DHB

Dr Philip Wong

Gastroenterologist

Auckland DHB

Dr Linus Wu

General Surgeon

Waikato DHB

Dr John Wyeth

Former Medical Director, Pharmac

Past President, NZ Society of Gastroenterology

Gastroenterologist

Capital & Coast DHB