Emily Beswick says it's devastating treatment for her daughter, Stella, exists but is out of reach. Photo / Boris Jancic
Emily Beswick says it's devastating treatment for her daughter, Stella, exists but is out of reach. Photo / Boris Jancic
A mother has pleaded for the Government to urgently fund a million-dollar treatment that could prolong her 14-year-old daughter's life, amid a series of petitioners calling for more money for New Zealand's drug-buying agency and a review into its decision-making.
Parliament's Health Select Committee last week rejected a petition's call for an inquiry into Pharmac, describing the agency's independent processes as robust and evidence-based.
On Wednesday, the committee faced 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.
Pharmac announced today it planned to fund two new cancer drugs - one for breast and the other for lung cancer - following similar petitions earlier this year.
Emily Beswick's 14-year-old daughter, Stella, has been wheelchair-bound by spinal muscular atrophy since the age of two 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 extended 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.
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," she said.
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.
Afterwards, Beswick said it was frustrating seeing that families in Australia had treatments those here couldn't get.
"We've had families that we've known that have moved over and it's just so devastating just to be so close," she said.
"You see all these kids that are doing well and we're stuck here."
Speaking about breast cancer funding, Emma Crowley told the select committee the funding for Pharmac was "pathetically small". Photo / Boris Jancic
Other submitters, from a variety of cancer groups, shared that frustration on Wednesday.
Speaking for Breast Cancer Aotearoa, Emma Crowley was critical of the small portion of New Zealand's Government budget going towards funding medicines, compared to other OECD countries.
"We only spend 5.4 per cent of our total health budget on medicines and the OECD average is 14 per cent," she said.
"Of 36 OECD countries, only Mexico spends less per capita on medicines than New Zealand. We're not too poor to do better than this."
She described Pharmac's budget as "pathetically small", saying it needed to be tripled.
"As a country we're compassionate enough, advanced enough and prosperous enough to provide these medicines."
In her submission, the Ovarian Cancer Foundation's Rachel Brown also pointed to the gap between the treatments available in New Zealand and those given to the public in Australia.
"What is it that Pharmac knows that all of the rest of those countries don't know?" she said.
"There needs to be an inquiry. In reality, no one in this room knows if Pharmac is defensible."
The Lung Foundation and Myeloma New Zealand also raised the international disparity.
Chair and Labour MP Louisa Wall said while the Committee had rejected a call for an inquiry into Pharmac had been rejected last week, it had recommended work on the early access scheme be sped up.
"We are listening to you," she said.
In a statement, Pharmac said comparing the number of medicines overseas didn't reflect results.
"Australia is often cited as a place that funds medicines that aren't available here," director of operations Lisa Williams said.
"When it comes to having funded access to medicines, it's not about how many you have, but having access to ones that work.
She said Pharmac's spending on cancer medicines had been increasing significantly in recent years and was now over $220 million.
Minister of Health David Clark has said he won't interfere in the way to Pharmac makes its decisions, saying it's best left to the experts.
He's due to unveil the Government's long-awaited cancer action plan this month and has promised it will include help in speeding up access to medications.
Pharmac only received a $10 million boost to its nearly $1 billion budget in May, which has been criticised by the Opposition.
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.
While the agency was a promise from Labour during the 2017 election, Clark has recently said he has reservations about the policy and wants to keep the work inside the Ministry of Health.
