Tauranga terminal bowel cancer patient takes on Parliament with drug funding petition

Stephen Dunne visited Parliament for the first time yesterday - a trip not of casual curiosity, but rather a matter of life or death.

The 79-year-old Tauranga man is suffering from terminal bowel cancer and he made the one-day trip to Wellington with his daughter, Kristin Dunne, to present their petition calling for Cetuximab to be funded for bowel cancer patients.

The Dunne family has spent more than $120,000 - her parents' entire life savings - on private treatment, including a drug called Cetuximab that costs $2000 just to administer.

The duo was one of eight groups presenting a petition, each calling for Pharmac to fund various drugs. According to the Parliament website, 1165 people signed the Dunnes' petition that opened on August 14.

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Kristin Dunne presented the petition with a speech addressing the 50-strong crowd gathered and the Bay of Plenty Times understands Dunne called on the Health Committee to have Pharmac fund the drug as she presented the petition.

"I will never forget the hideous day of his terminal diagnosis. But that was over three years ago when Dad was given just nine months to live. One of the reasons he is here today is because of Cetuximab."

The Bay of Plenty Times understands Pharmac began assessing whether to fund the drug, which is publicly funded in 52 countries including Australia, in 2013.

"Six years later there is no decision," Dunne said. "In life and death situations, this is appalling . . . the system is broken."

Dunne said since her father had been on Cetuximab, his scan results had shown he was stable with some improvement.

She understands the next steps will take place next year, where she will present to a select committee on why the drug should be funded.

Stephen Dunne said he was "very proud" of Kristin and the way she fought on his behalf.

"She's an angel . . . all of my children have been marvellous."

Stephen Dunne said he had seen two great-grandchildren born and was set to celebrate his 80th birthday on Boxing Day with a cruise to Australia, none of which would be possible without Cetuximab.

He received a treatment every two weeks and found his strength restored after each session - a stark contrast to chemotherapy.

"Chemo affects all of your body while Cetuximab only affects the part of the body that need it."

Bay of Plenty MP Todd Muller, who was at the petition presentation, said Kristin Dunne was "incredibly eloquent" when speaking to the crowd.

"It's very emotional, especially seeing someone from Tauranga there. It puts a local face to a national problem."

Patient Voice Aotearoa chairman Malcolm Mulholland said Dunne's speech was "powerful" and people were shocked that Pharmac had been considering applications for funding since 2013.

"The non-action is costing lives and if it isn't costing lives, it's costing houses and mortgages."

Bowel Cancer New Zealand spokeswoman Mary Bradley said it was "incredibly distressing" for patients and their families to not be able to get Cetuximab if they could not afford to pay for it privately.

Bradley said Cetuximab should have been funded years ago, with New Zealand lagging behind Australia, where the drug is funded.

Pharmac director of operations Lisa Williams said the organisation had received four separate applications for funding of Cetuximab for colorectal cancer.

Three were recommended for decline by Pharmac's expert clinical advisers and one was recommended for funding by Pharmac's Cancer Treatments Subcommittee in July 2019 with medium priority.

"Pharmac is now undertaking assessment using our decision-making framework, the Factors for Consideration, and will then compare and rank Cetuximab against other medicines' investment options.

"There is no timeframe on when or if a ranked medicine will be funded. Pharmac decides what will be funded, considering all the options for funding, to ensure we are getting the best possible health outcomes for New Zealand," Williams said.

Stephen Dunne's cancer fight

Stephen Dunne has been fighting stage four bowel cancer for four years. After he was diagnosed in December 2014, he had an operation and was told no follow-up treatment was needed at the time.

A check-up a year and a half later showed the cancer had spread to his lungs and liver and Stephen was given between 12 and 18 months to live with treatment.

He received chemotherapy and radiation before he started using Cetuximab.

Kristin Dunne previously told the Bay of Plenty Times her father's tumours have shrunk and decreased in number while he has been on the drug, with the only side effects being a skin rash.

Stephen Dunne and his wife, Therese, have drained their life savings, sold their rental property and have considered selling their home to continue paying for the drug.

The drug was free after a certain number of treatments. Dunne had passed that point, but it still cost $2000 to administer.