PRESS AND MEDIA RELEASES
INFLAMMATORY BOWEL DISEASE (IBD) PATIENTS CELEBRATE PHARMAC DECISION
11 October, 2022
On 2 December 2020, braving the wind and rain, Crohn’s and Colitis NZ Charitable Trust led a march of patients and medical professionals to the steps of Parliament. The purpose was to present a petition with over thirty thousand signatures pleading for funding of ustekinumab, an urgently needed medication to treat people with severe Crohn’s disease and ulcerative colitis. The medication, also known by its brand name Stelara, is funded in over 35 other OECD countries.
Today, Pharmac announced it has initiated their consultation process to fund the medication, anticipating it being made available to patients with IBD who have failed to respond to other medications in February, 2023.
#ibdhasnoage - World IBD Day 2022
19 May, 2022
New Zealand has one of the highest rates of Crohn’s disease and ulcerative colitis in the world (known as Inflammatory Bowel Disease or “IBD”). World IBD Day, observed in over fifty countries, commemorates the five million people worldwide who live with these diseases every day of their lives. 20,000 of these people are our neighbours, friends, and family.
IBD does not discriminate by age or sex. It impacts the lives of children, teens, young adults, and the elderly. And it brings to each stage of life its own unique set of challenges.
From work to school, travelling, starting a job, becoming a new parent or grandparent, we hope that these series of films will give insight into what it is like to live with IBD.
The people in this film are not actors they are real New Zealanders who live with IBD. Thank you so much to Pete, Hannah and Charlotte for opening up and sharing their journey's with IBD.
Click here to watch the video>>
WORLD IBD DAY 2022
16 May, 2022
There are over 5 million people worldwide who are challenged daily by the symptoms of Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease or “IBD”). 20,000 of them live in our small country, which has the third highest rates of these diseases in the world.
Every year, World IBD Day is observed in fifty countries. It commemorates people of all ages who are affected by these diseases, from the very young to the very elderly. New Zealand’s World IBD Day will take place in the Grand Hall of Parliament on 17 May.
PARENTS RESORT TO PETITIONING STARSHIP FOR BETTER CARE OF THEIR CHILDREN.
10 May, 2022
Concerned parents are sending a petition with a strong message to Starship Hospital: they are tired of waiting for basic, standard-of-care treatment of their children with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or “IBD”). Specifically, they are tired of waiting for the hospital to hire a paediatric IBD Clinical Specialist Nurse, whose role would significantly decrease the chances of their children ending up in the hospital and under the surgeon’s knife.
STAKEHOLDER ANNOUNCEMENT
14 October, 2021
Crohn’s and Colitis New Zealand Charitable Trust is pleased to announce the appointment of Belinda Brown as its Chief Executive Officer.
WORLD IBD DAY 2021 – EXHIBITION AT PARLIAMENT
19 May, 2021
Exhibiting their artistic talents, politicians and leaders across New Zealand have put up their hands to raise awareness of people living with chronic illnesses. On the 24th of May, an artistic installation called “Unmasking IBD” will be unveiled at the Grand Hall of Parliament, representing the masks that people with chronic diseases like Crohn’s disease and ulcerative colitis wear to hide their illnesses in everyday life. The installation will travel throughout the country during 2021-2022.
Prominent New Zealanders are creating doodles and drawings, empathising with those behind the masks. These doodles will be exhibited as a key part of an installation created by noted Wairarapa artist Katie Gracie who was diagnosed with ulcerative colitis nine years ago.
WORLD IBD DAY 2021
11 May, 2021
Exhibiting their artistic talents, politicians and leaders across New Zealand have put up their hands to raise awareness of people living with chronic illnesses. On 24 May, an artistic installation called “Unmasking IBD” will be unveiled at the Grand Hall of Parliament, representing the masks that people with chronic diseases like Crohn’s disease and ulcerative colitis wear to hide their illnesses in everyday life.
MP'S TO VISIT CAMP FOR CHILDREN AND TEENS WITH CROHN'S AND COLITIS
3 January, 2021
On 4 January over seventy five children and teens with Crohn’s disease and ulcerative colitis from all over New Zealand will be arriving at Camp Carey in Waitakere, Auckland. They will be attending the seventh annual six day camp for children with these diseases.
Crohn’s disease and ulcerative colitis have received extensive coverage recently in the media. On 2 December close to a hundred people marched from Civic Square to Parliament, where David Seymour received a petition with over 30,000 signatures ...
PRIME MINISTER COMMITTED TO PHARMAC INVESTIGATION, BUT HEALTH MINISTER AT ODDS
PRIME MINISTER COMMITTED TO PHARMAC INVESTIGATION, BUT HEALTH MINISTER AT ODDS15 October, 2020
On 30 September Prime Minister Jacinda Ardern committed to having an investigation into Pharmac’s decision-making processes, the same day she received an open letter endorsed by 105 medical professionals slamming Pharmac’s processes, but official correspondence shows Health Minister Chris Hipkins appears not to have heard about it.
Earlier in the day Act Leader David Seymour announced an independent review of Pharmac as policy. Then under pressure that evening from host Patrick Gower in the Newshub Leaders Debate, both the Labour and National leaders agreed to a Pharmac investigation (with the Greens joining the call a week later).
INTERNATIONALLY- RESPECTED MEDICAL SPECIALIST SLAMS PHARMAC, URGES PM TO INVESTIGATE
30 September, 2020
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”.
CLINICAL NURSE SPECIALISTS SAY PLIGHT OF SEVERELY ILL BOWEL DISEASE PATIENTS IN NZ IS HEART-BREAKING AND BITTERLY UNFAIR
8 September, 2020
Senior Clinical Nurse specialists caring for some of New Zealand’s sickest bowel disease patients say the Government has turned its back on their patients by refusing to fund routine, mainstream treatments that have been in use around the world for the past several years. They say that in denying treatment for these severely ill patients the Government is heartless, negligent and totally out of step with all other first world countries*.
SPECIALISTS OUTRAGED BY LACK OF TREATMENT FOR BOWEL DISEASE
24 August, 2020
Leading NZ gastroenterologists are petitioning 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. With respect to access to effective medications, specialists treating these patients say the current situation is ‘outrageous’ and ‘disgraceful’, and that 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.
NZ has world's third highest rate of inflammatory bowel disease
NZ has world's third highest rate of inflammatory bowel disease2 November, 2017
New Zealand has the third worst rate of inflammatory bowel disease in the world and it is growing at an alarming rate, a new study has found.
The study, launched this morning in Parliament, estimated 20,792 New Zealanders were affected by the disease. That's a rate of one in every 227 people which puts the disease on par with type 1 diabetes.
Help group 'missing link' for sufferers
Help group 'missing link' for sufferersNovember 25, 2015
A new patient support group will provide the "missing link" of care for more than 300 local Rotorua patients suffering from two inflammatory bowel conditions. Check out the full story...read more
Crohn's can't slow crime-fighting cop!!
October 19, 2015
Detective Constable Rebecca "Becs" Parker, 25, works on the crime squad at busy Counties Manukau Police Station. Read how Bec's battle to remain on the beat with incurable bowel disease has earned her national recognition and a new role. Check out the full story...read more
Battling Crohn's tough work for youngster !
February 2, 2015
Living with Crohn's disease is all Ranger Leary knows.
Last week, the 10-year-old from North Canterbury finally had the chance to meet other children who share the condition he has had since he was six weeks old. Check out the full story...read more
Speech given by Lady Janine during her visit to "Camp Purple Live".
January 30, 2015
Our Patron, Lady Janine Mataparae visited the camp on the final morning to present certificates of
Camp Purple: Living with Crohn’s and Colitis
January 31, 2015
This one-week summer CCNZ Children and Teen's camp was held at Auckland’s YMCA Camp Adair, attended by 48 young people aged 10-19 from all over New Zealand who live with IBD. Check out the full story...read more
Jetstar Flying Start Programme
January 31, 2015
The Crohn’s and Colitis New Zealand Charitable Trust (CCNZ) is our 11th recipient of the Jetstar Flying Start grant, receiving $15,000 cash and $15,000 in travel to host the first NZ-based camp for children and teenagers living with Inflammatory Bowel Disease (IBD). Check out the full story...read more
