Installation features 'forbidden' medicines denied to New Zealanders

Locked up medicines on display to highlight unfunded treatments

Patients waiting for life-changing medicines to be funded say people should not have to fundraise, go into debt, or travel overseas for treatments and therapies that could be administered here.

More than a dozen patient organisations are hosting the Forbidden Pharmacy, online, and this weekend at Auckland's Shed 10.

It's an installation that shows shelves of white medicine packets and bottles locked behind doors - representing what people may need but can't access, because they are not funded by Pharmac.

When Jemma Gerring was diagnosed with stage four bowel cancer in late 2023 she had no symptoms till the day she went to the doctor thinking she might have appendicitis.

"It was surreal. It was just like being hit by a freight train. It took a long time to process what that meant," she said.

"You start off really optimistic about, okay, that's great, we'll have treatment and be all better. Very quickly you start looking at the statistics and realise it's not going to be that easy."

She has health insurance but that has a cap for the unfunded drug that is buying her more time with her family.

It has so far cost her hundreds of thousands of dollars for the drug and life-prolonging surgeries in Australia; something she said is unfair to anyone without such means.

"I think the thing for me is I feel guilty that I can afford to pay for this. It's inconvenient and it costs money, but I can pay for it and I really do credit this drug with making a difference in my life," she said.

"I'm still working full-time, I'm still being a mum full-time."

Gerring drives six hours from New Plymouth to Palmerston North each fortnight to have the drug she pays for, Bevacizumab, administered.

It is funded in other countries, including Australia and the UK.

"It's that sort of continual guilt that you feel too, of 'Am I taking money away from my children's future, from my husband's ability to live when I'm not here?'," she said.

"But I'm literally in the situation of buying time, and I like to think it's worth it.

"It's certainly worth it for me."

Locked up medicines on display to highlight unfunded treatments

The Forbidden Pharmacy has the medication on a shelf, and spokesperson for the installation, Tim Edmonds, said for patients waiting for medicine to be funded, the cost of living is a burden.

"This is having to make decisions no New Zealander should ever have to make, remortgaging homes, setting up Givealittle pages, moving to another country," he said.

"There is a financial cost, an emotional cost, but actually for many people those aren't options and the cost is going without, worsening health and less time with family and loved ones."

Edmonds is chief executive of Blood Cancer NZ and said a recent international report found patients in New Zealand have the poorest publicly-funded access to modern medicines out of comparable OECD countries and that the majority, 95 percent, of modern medicines don't make it to the shelves here.

"We want the future government to solve this for New Zealand," Edmonds said.

"We want the medicines that Pharmac have recommended to the government to be funded over three years and clear the backlog, and we want to plan for sustained investment so that we stop getting further behind the countries that we like to compare ourselves to."

For Bart Schroder, having access to an unfunded cancer medication means he is still alive after being diagnosed with metastatic prostate cancer five years ago.

His health insurance has covered the cost since diagnosis, otherwise he would have had a long wait.

"In my case, I'm still here four years later, which is pretty good, and I'm still feeling really good," he said.

"That wouldn't have been the case, because my cancer is very aggressive... it would have taken me out so the standard treatment wouldn't have been very effective."

Schroder would like to see the medicine funded so everyone with his diagnosis can access it early on.

An engineer, he is still working for the company he founded and recently sold, it sells specialised equipment around the world.

"Five good years of working, contributing, selling stuff all over the place is way better than six months in a hospital. Hospital is much more expensive than just looking after me for five good years," he said.

"So why don't they fund it? It makes a lot of sense."

Looking ahead, Gerring wants more life-changing medicines funded so everyone can have the same chance as she has to enjoy more of their life.

"I was sort of told average life expectancy from diagnosis is two and a half years. I'm beyond that now, so... I definitely feel like I'm living on borrowed time, but every extra month I get with my children at this very formative age for them is worth it."

Politicians from National, Labour, ACT and New Zealand First visited the Forbidden Pharmacy today.

It's open to the public on Saturday at Shed 10, near The Cloud on Auckland's waterfront.