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‘Heart-breaking’: 30,000 sign petition urging Pharmac to fund inflammatory bowel disease medicine

It is too late for Hayley Greer.

The 24-year-old from Lower Hutt had surgery to remove her colon in January, after medicine for her inflammatory bowel disease stopped working. She will live with an ostomy bag for the rest of her life.

She joined dozens of protestors on a march through Wellington’s streets on Wednesday afternoon to present a 30,000 signature petition to Parliament calling on Pharmac to fund ustekinumab, a medicine used to treat bowel disease.

More than 20,000 New Zealanders live with diseases such as Crohn’s or colitis but if the funded drugs don’t work, or for only a limited time, there are no other options but surgery.

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Hayley Greer, 24, says she may not have needed major surgery if ustekinumab was funded in New Zealand.

ROBERT KITCHIN/Stuff

Hayley Greer, 24, says she may not have needed major surgery if ustekinumab was funded in New Zealand.

“If it was funded it could’ve prevented me having to have my colon out. It could’ve prevented my whole surgery,” Greer said.

“That is really hard to process.”

Ustekinumab is funded in more than 35 countries overseas. Without the expensive treatment, doctors condemn patients to a life of unnecessary pain, Crohn’s and Colitis NZ chair Richard Stein said.

“When people don’t respond to medication we have nothing left except surgery. The disease also comes back,” he said.

Marian O’Connor, co-chair of the Inflammatory Bowel Disease nurses group said nurses found it “frustrating, heartbreaking and soul-destroying” to tell young patients they needed to have major surgery.

People are most commonly diagnosed with Crohn’s or colitis as teens or young adults.

“Sitting with a 17-year-old girl explaining 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,” she said.

Pharmac’s own committee advised that it fund ustekinumab in May. Its chief executive Sarah Fitt told protestors she had regular discussions with suppliers and hoped the medicine would be funded soon. The drugs were on a waiting list.

Chair Steve Maharey said they would “do their best” to get the medicine funded.

Jessica Port, 34, (right) from Porirua was the last person in the country to get ustekinumab on compassionate grounds, and wants others to have the same opportunity.

ROBERT KITCHIN/Stuff

Jessica Port, 34, (right) from Porirua was the last person in the country to get ustekinumab on compassionate grounds, and wants others to have the same opportunity.

“I want to reassure you these issues are in the top of our mind. We would like to solve them and will do our best to solve them,” he said.

“I know these are difficult moments. We would love to give you [a resolution]. We are going to try our best.”

But the words are of little comfort to Greer, who underwent life-altering surgery in January and has been in-and-out of hospital since then.

She was diagnosed in 2014, as a first-year university student. She had two years in remission before the disease came back. Towards the end of last year all medication stopped working.

Her last option was surgery, and her colon was removed in January.

“I have now got an ostomy bag. I have been to hospital eight times already for more surgeries,” she said.

And although it’s too late for Greer, she doesn’t want others to have to go through what she has experienced.

“When you lose a major organ in your body, you lose yourself. My life has completely changed from it,” she said.

“If it was funded it would stop other people potentially going through with surgery.”

Act Party leader David Seymour received the petition. He told the rally the legislation under which Pharmac is operated needs to be reviewed.

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