'It's life-changing': Cancer sufferers say proposed drugs funding amazing

Cancer patient Tracey Elliott with husband Troy. Photo / Supplied

Cancer drug advocate Troy Elliott, whose wife Tracey was diagnosed with breast cancer in 2014, says Pharmac's decision to fund kadcyla is "life-changing".

Pharmac announced plans today to fund two new cancer drugs pending public feedback.

It came after the committee received seven new petitions from groups asking for improved access to a series of treatments for ovarian, breast and lung cancers, leukaemia, myeloma, as well as the rare conditions spinal muscular atrophy and Pompe disease.

It proposed kadcyla, for HER-2 positive metastatic breast cancer, and alecensa, for positive advanced non-small cell lung cancer, be made publicly available.

"It's life-changing and it's not just life-changing for us, it's life-changing for hundreds of families in New Zealand," Elliott told the Herald.

But the road to get the drug funded hasn't been easy for the couple.

They have had to pay $3000 a week, or over $120,000 a year, for the kadcyla treatment, he said.

They were even forced to put their Auckland home on the market to continue to be able to afford the drug.

However, ASB, their mortgage holder, has now contacted the Elliotts to tell them not to sell the house.

"ASB said they don't want us to sell the house, they wanted to help us over the next few months," Elliott said.

"They said 'you're doing a great job on behalf of so many people' so ASB has helped us out phenomenally. The house is officially off the market."

For the past six months, Tracey has been on the kadcyla drug which had enabled her to "live life and not just survive".

But the work wasn't over just yet, Elliott said.

Wiki Mulholland, who has advanced breast cancer, has been on the front line of the campaign. Photo / Mark Mitchell

"We've managed to get this one drug funded but there are so many other drugs that need to get funded just for breast cancer, let alone other cancers.

"From our side, Tracey and I are committed that we'll keep the fight and push it because advocacy is starting to show it works."

Ocrevus, a drug which treats relapsing-remitting multiple sclerosis, is also planned to be funded.

Public consultation closes on August 21 but if given the go-ahead, changes for kadcyla, alecensa, and ocrevus would be made from December 1.

Pharmac's board, or its delegate, would consider all of the feedback received from the public prior to making the final decision on the proposal.

Elsewhere, Emily Beswick pleaded with the Government today to urgently fund a million-dollar treatment which would prolong her daughter's life.

Stella, 14, has been wheelchair-bound by spinal muscular atrophy since the age of 2 and may soon need machines to help her breathe and eat as she weakens.

A treatment that could halt the progress of the condition and potentially extend her life, Spinraza, was publicly funded in Australia a year ago.

Pharmac has deferred a decision on funding the treatment until it has more information.

Emily Beswick says it's devastating treatment for her daughter, Stella, exists but is out of reach. Photo / Boris Jancic

The drug's list price was about $1 million for the first year of treatment although it was not clear at what price Pharmac could acquire it, Beswick said.

"We feel all hope is gone. We have been waiting for 13 years for a treatment to arrive and now that it's finally here it is out of reach," she told the select committee as part of a wider petition.

"[Stella] has never been able to crawl, walk or stand … If Stella gains access to Spinraza the progress of her disease would be halted and she may even regain some movement or abilities she has lost.

"Please don't allow Pharmac to condemn her to the devastating prognosis her genetics have given her."

Petitioner Janine Yeoman said about 26 people were thought to share the condition in New Zealand and there had been no discussion by Pharmac about the price.

Pharmac received a $10 million boost to its nearly $1 billion budget in May, which has been criticised by the Opposition as too low.

The Government has previously defended the small increase, saying the agency had received a 13 per cent boost in the 2018-19 Budget.

The National Party last month promised to increase funding for proven cancer drugs by $50 million a year and to set up an independent national cancer agency if elected.