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