Nurse Specialists Say Plight Of Severely Ill Bowel Disease Patients In NZ Is Bitterly Unfair
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*.
Marian O’Connor, clinical nurse specialist who cares for severely ill patients with Crohn’s and Ulcerative Colitis, worked in the UK for 15 years and has seen first-hand the transformative benefits of the newer biologic medicines not available here.
“I was shocked when I arrived here to find how desperately out of date NZ is with regard to treating these terrible diseases.”
Ms O’Connor is the past Chair of NECCO (Nurses European Colitis & Crohn’s Organisation) and led the Inflammatory Bowel Disease nursing service at the internationally renowned St Mark’s Hospital for more than 10 years.
“I was shocked when I arrived here to find how desperately out of date NZ is with regard to treating these terrible diseases.
“It is bitterly unfair to patients, and heart-breaking for us as medical professionals to have to tell someone living with the stigma and pain of these diseases, and now facing life-altering, disabling surgery, that treatments that could enable them to lead a normal life are not funded here.
“We’re the ones who have to tell a young woman who faces a total colectomy that the surgery may affect her ability to conceive; and tell a seventeen year old that she needs bowel surgery and months out of school; and try to explain to a seven year old why his mum has difficulty attending his school’s functions– all because the medications listed in our educational material are not funded here,” said Ms O’Connor.
Ms O’Connor is one of two clinical specialist nurses on the Crohn’s and Colitis steering group petitioning the Government to fund ustekinumab (Stelara). Fellow nurse Jacqui Stone is Chair of the Inflammatory Bowel Disease NZ Nurses Group and a Nurse Practitioner who specialises in Gastroenterology & Hepatology.
Ms Stone said on the basis of financial cost alone, funding the treatment is a no-brainer.
“Most of our sickest patients who need this are on double doses of expensive biologics that aren’t working, and will have multiple hospitalisations and surgeries, as well as potentially losing the ability to work. It appears that Pharmac operates in a silo and doesn’t factor these costs into their decisions.
“It is also deeply concerning to hear formally from Pharmac’s Acting Medical Director that feedback and correspondence they are receiving from patients and other members of the public as a result of our petition ‘does not influence our decision-making processes’. We ask: how else can patients, doctors and nurses get across the human impact and cost of not funding this treatment, when all other channels of communication with Pharmac over the years have failed?
“As nurses caring for patients suffering with these crippling diseases, including many children and young people, we are daily facing the evidence of the failure to fund this medication, and we will not stop fighting for it,” said Ms Stone.
The following are extracts from some of the patient stories received though the petition #wecantwait, that in one week has received 24,000 signatures:
“I don't want a lavish life, I just want a chance at life, and I want it for everyone else with IBD too.”
“Rushing to the toilet 20 times a day, passing diarrhoea, blood ... being fatigued. I lost about 10kg; it was just awful. Pharmac declined an application for a one-off exception for me to use ustekinumab. So I had the surgery and now I live with a permanent ostomy. It took me months to tell my partner about it. How I wish I’d had the option of the biologic drug.”
“I was diagnosed with Crohn's disease in 2017, I was 11. I have spent lots of time in hospital and had heaps of surgeries. I did 8 weeks of not eating food and only having special milkshakes to try and make all the ulcers and inflammation inside my body better, it was yuck.”
“My first year at high school I spent most of it at hospital and home and being taught by a health school teacher because I was too sick.”
“The hardest part is the invisibility of this disease.”
“IBD is hard to talk about, it’s private and embarrassing.
“I was experiencing excruciating pain every single day, diarrhoea, nausea, blood loss, weight gain, constipation, joint pains, bloating and the list goes on.”
“I have suffered bouts of depression and endured many humiliating and degrading side effects of Crohn’s disease. It is a real struggle to get myself out of bed some mornings.”
“I would be a lot more confident going out in public knowing I do not have to look for every single toilet for that 'just in-case moment'.
“Between 2011 and 2015 my Crohn’s disease was so severe, I was bedridden, and spent an average of 3 months in hospital each year.”
“The severe tiredness, the cramps, the bloody stools, just the unknown. I am scared for my future.”
“I really don’t want to go back to living within my four walls between my bed and toilet, with the fear of leaving my house in case I have an accident in public.”