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It’s too late for Hayley Greer.
The 24-year-old from Lower Hutt underwent surgery to remove her colon in January after medications for her inflammatory bowel disease stopped working. You will live with an ostomy bag for the rest of your life.
He joined dozens of protesters in a march through the streets of Wellington Wednesday afternoon to present a 30,000-signature petition to Parliament asking Pharmac to fund ustekinumab, a drug used to treat intestinal disease.
More than 20,000 New Zealanders are living with illnesses like Crohn’s disease or colitis, but if funded drugs don’t work, or only for a limited time, there are no options other than surgery.
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ROBERT KITCHEN / Things
Hayley Greer, 24, says she may not have needed major surgery if ustekinumab was funded in New Zealand.
“If it had been funded, it could have prevented my colon from being removed. I could have prevented all of my surgery, ”Greer said.
“That is really difficult to process.”
Ustekinumab is funded in more than 35 countries abroad. Without the costly treatment, doctors sentence patients to a lifetime of unnecessary pain, said Crohn’s and Colitis NZ president Richard Stein.
“When people don’t respond to medication, we have nothing left except surgery. The disease also returns, ”he said.
Marian O’Connor, co-chair of the Inflammatory Bowel Disease Nurses Group, said it was “frustrating, heartbreaking and heartbreaking” for nurses to tell young patients that they needed major surgery.
People are most often diagnosed with Crohn’s disease or colitis as teenagers or young adults.
“Sitting down with a 17-year-old girl and explaining to her that her bowel is going to be removed and that she will have to live the rest of her life with a stoma bag is heartbreaking,” he said.
Pharmac’s own committee reported that it would fund ustekinumab in May. Its CEO, Sarah Fitt, told protesters that she had regular conversations with suppliers and hoped the drug would be funded soon. The drugs were on the waiting list.
President Steve Maharey said they would “do everything possible” to fund the drug.
ROBERT KITCHEN / Things
Jessica Port, 34, (right) of Porirua was the last person in the country to get ustekinumab for compassionate reasons and wants others to have the same opportunity.
“I want to assure you that these issues are on our mind. We would like to resolve them and we will do our best to resolve them, ”he said.
“I know these are difficult times. We would love to give you [a resolution]. We will do our best. “
But the words are of little comfort to Greer, who underwent life-changing surgery in January and has been in and out of the hospital ever since.
She was diagnosed in 2014 as a freshman college student. He had two years in remission before the disease returned. Towards the end of last year, all the medications stopped working.
His last option was surgery and his colon was removed in January.
“Now I have an ostomy bag. I’ve already been to the hospital eight times for more surgeries, ”he said.
And while it’s too late for Greer, she doesn’t want others to have to go through what she’s experienced.
“When you lose an important organ in your body, you lose yourself. My life has completely changed, “he said.
“If it was funded, it would prevent other people from having surgery.”
Act Party leader David Seymour received the request. He told the rally that the legislation under which Pharmac operates needs to be reviewed.
