Sick of waiting for years for Pharmac to fund standard, current therapy to treat their diseases, patients with Crohn’s disease and ulcerative colitis are taking to the street to plead for ustekinumab, a medication that is funded in over 35 other countries throughout the world.

After gathering more than 30,000 signatures for a petition patients, supporters, gastroenterologists, and nurses are today marching to Pharmac headquarters and then on to Parliament to take their message direct to the country’s decision makers.

Dr Richard Stein, Chair of Crohn’s & Colitis NZ Charitable Trust, said it is outrageous that patients suffering with these devastating diseases have had to go to such lengths to get access to medications that are standard treatments funded throughout the Western world.

“Symptoms of these diseases are bloody diarrhoea and severe abdominal pain. Lack of effective treatment results in bowel blockages, anaemia, and malnutrition, often resulting lengthy hospitalisations and repeated surgeries to removed diseased bowel. Many patients require a permanent ostomy bag.

“There is growing anger and desperation among medical professionals about the lack of availability of treatment for these patients, with more than 100 NZ professionals specialising in these diseases adding their names and support to a plea to the Prime Minister to heed this cause.

“Without access to this treatment doctors are effectively having to condemn patients to lives of unnecessary pain and potentially life-altering surgery, with profoundly isolating impacts. We are literally years behind the rest of the world in our treatment these diseases.”

Professor Richard Gearry, a leading NZ IBD researcher, said today there appeared to be a complete block by Pharmac on treatments for Crohn’s and colitis, and a total lack of understanding, knowledge and empathy regarding these diseases.

“I question Pharmac’s spin about the great job they’ve done to minimise the drug spend in New Zealand. They may have saved money, but they have also cost lives, cost opportunities and cost money through the direct and indirect costs of diseases that they ignore in their modelling.”

“That is why our community of patients, whanau, friends, doctors and nurses have come together and campaigned to support those with these debilitating diseases. I urge the Government to hear our loud and united voice, which will not be going away,” said Professor Gearry.

The petition will be presented to Act Party Leader David Seymour and Act Health spokesperson Brooke Van Velden on the steps of Parliament at 1.00pm 3 December

New Zealand has one of the highest rates of these diseases in the world. Over 20,000 people are affected, most of whom are diagnosed as children, teens, and young adults. These diseases are chronic, life-long, and there is no cure. The medication they are requesting is funded in over 35 countries throughout the world.

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