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Specialists Outraged By Lack Of Treatment For Bowel Disease

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. 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.

‘Flares’ of the disease are common and frequently result in emergency hospitalisations and repeated, irreversible surgeries to remove sections of the bowel. Many patients are forced to live with permanent stoma bags.

Launching the petition today Dr Richard Stein, Chair of Crohn’s & Colitis NZ Charitable Trust, said NZ has one of the highest incidences in the world for these diseases, but treatments for those with the severest disease, routinely funded for patients throughout the Western world, is not funded in NZ.

“These are chronic, life-long, devastating diseases, currently affecting over 20,000 New Zealanders, including many children and young people, but they are not often talked about because of the terrible, often embarrassing symptoms,” said Dr Stein.

Dr Richard Gearry, a leading NZ IBD researcher, said that treatment options for New Zealand patients are severely limited.

“New Zealand funds only one class of the so-called biological therapies, while other classes of these medications are commonly available throughout the world. If patients fail to respond to the limited options, their only recourse in NZ is surgery, with potentially life-altering impacts.

“We are petitioning for urgent access to the biologic drug ustekinumab that is currently before Pharmac for consideration of funding. Ustekinumab has been registered in NZ by Medsafe since 2018. Vedolizumab, another treatment option for severe Crohn’s and colitis is currently awaiting registration by Medsafe, and we will also be seeking funding approval for this therapy, once it is registered,” said Dr Gearry.

Dr. Stein said these medications are standard, mainstream treatments throughout the world.

“They’re funded by over twenty-five countries, including Slovenia, Slovakia, and Croatia. The drugs are widely used in Australia. We are years behind the rest of the developed world. New Zealanders deserve better,” said Dr Stein.

Dr Malcolm Arnold, President of the NZ Society of Gastroenterologists, said a recent survey[1] of its membership revealed a sense of desperation and anger among doctors treating patients with severe Crohn’s and colitis, calling the lack of availability of treatment ‘hopeless’, ‘terrible’, and ‘next door to criminal’.

“The tragedy is that severe Crohn’s and colitis can be treated, giving patients the possibility of normal, productive and fulfilling lives. Instead we’re condemning them to suffer in silence, with a life of chronic pain and potentially life-altering surgery with profoundly isolating social and psychological impacts. For us, as medical professionals, this situation is deeply distressing,” said Dr Arnold.

The following are just a few of the comments from participants in the survey:

“These are young people who suffer chronic ill health and reduced life expectancy because they live in NZ. In Australia they would have access to drugs like ustekinumab with access to modern alternatives to anti TNFs they could have full lives and contribute to the economy. The cost of surgery/ long-term ill health and complications outweigh the cost of the drugs even if moral distress is not taken into account. They would be better off having cancer. This is an outrageous situation. The NZ gastro society must make this a priority.”

“I am sad and embarrassed that we are so far behind the rest of the world in relation to the available funded treatments for IBD. It is sad as patients who are unwell are severely affected with their symptoms which greatly affects their wellbeing and quality of life. I have several patients who have had to give up employment due to lack of treatments available.”

“People with moderate to severe IBD in New Zealand do not get a fair deal. These patients suffer from inequity when compared to patients in Australia and Canada. They also suffer inequity when compared to New Zealanders with non-gastroenterology conditions of similar or lesser severity who have access to therapeutics in our country.”

Dr Stein noted that Pharmac’s own Gastroenterology Pharmacology and Therapeutics Advisory Committee has repeatedly recommended that funding of ustekinumab be given ‘high priority.’

“However Pharmac has repeatedly ignored this recommendation and continues to give ustekinumab a lower priority for funding. We are determined to see that change.

“Cost can’t be an issue, as the cost of ustekinumab is comparable to the currently funded biologics. The irony is that many patients who fail to respond to the current treatments remain on them at twice the recommended doses, exceeding the costs of the medication we need.” said Dr Stein.

The petition is being widely circulated, and will be presented to Parliament following the election.

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