This story was originally published on Stuff
“Why does New Zealand need to reinvent the wheel?” Posed by National MP Maggie Barry, that was the question at the heart of a fight to have dozens of life-extending – and life-saving – drugs funded.
Emotions ran high during Wednesday’s health select committee as plea after plea from those suffering at the hands of disease were heard by politicians from both sides of the aisle.
Boiled down, the pleas were simple; give more money to Pharmac for drug funding and do it quickly.
With his voice breaking and near tears, Dr Neil Graham told the committee his access to unfunded drug Ibrutinib for chronic lymphocytic leukaemia “saved his life” but others had not been so lucky.
“If you have sufficient wealth to fund them, you survive, if you don’t, you die.”
Those staring down the barrel had few options other than to sell their house, qualify for a clinical trial, travel to Australia or beg “in its various guises”. Graham said.
His story was echoed by the five submitters who followed him, discussing their experiences with lung cancer, multiple myeloma, spinal muscular atrophy and Pompe disease.
Met mainly with nods from committee members, including a revolving door of National Party MPs who subbed in throughout the morning meeting, those speaking were thanked for their time and promised consideration. Nothing more.
Later in the day Pharmac released a proposal to fund advanced breast cancer drug Kadcyla, Alecensa (for lung cancer) and Ocrevus (for Multiple Sclerosis).
Ahead of the committee going into public exclusion, chair Louisa Wall told those gathered that Pharmac would be called upon to address “too many unanswered questions”.
For Emma Crowley, deputy chair of Breast Cancer Aotearoa Coalition, consideration and future meetings didn’t go far enough, with the path forward very clear in her mind.
“They say they’re listening but … we need better processes, we’ve fallen behind and it’s only going to get worse.”
Harsh rationing, she said, led to early deaths. “Fund more drugs, it’s that simple.”
Talk of an interim drugs fund to pay for new medicines, while effectiveness evidence was still being gathered, began swirling in late 2017 but Pharmac swiftly warned that such a scheme could blow out the health budget by up to $90m.
With that effectively off the table, petitions and marches through Wellington had become the norm, as one of the few ways for patients to draw attention to their plights.
Those behind this week’s petitions were among the hundreds who marched through the city under the ‘Right to Live’ banner in May, stopping to hold a three-minute vigil outside the offices of Pharmac.
Malcolm Mulholland, chair of newly established patient advocacy group Patient Voice Aotearoa, said Wednesday’s avalanche of petition hearings was just the start.
Eight more petitions, covering a range of diseases and the unfunded drugs associated with them, were already in the pipeline, each echoing the call for more money and transparency as well an overarching inquiry into Pharmac.
In response to questions put to Pharmac by Stuff around its transparency and timeliness, director of operations Lisa Williams acknowledged that the agency’s funding decisions often took time; something many patients didn’t always have enough of.
She said the organisation was working on becoming more transparent by “making funding decisions faster, clearer and simpler.”
That process would include explaining decision-making process in more detail, working to close funding applications that were no longer being actively considered and publishing recommendations from expert clinical advisors faster.
Questions around Pharmac’s budget and calls by MPs for an inquiry into how the agency operates, were referred on to Health Minister David Clark’s office.
13 YEARS AND COUNTING FOR TREATMENT
Diagnosed with spinal muscular atrophy at 15 months old, the odds have long been stacked against Stella Beswick, with the medical opinion that she’d be “lucky to make it out of childhood”.
Fast-forward to today and looking at Stella, now 14 years old, most would not see a sick child but the reality, her mum Emily said, was that without access to expensive, non-funded drugs, a sharp decline was inevitable.
As her mum spoke candidly about having to consider an end-of-life plan for her daughter, sat among submitters and in front of MPs was Stella, listening intently, on behalf of those, like her, with spinal muscular atrophy.
It was hope that sustained the Beswick family with each year bringing more scientific evidence and eventually treatment options.
“Now that a game-changing treatment [Spinraza] is finally being made available, the thought that it’s inaccessible for Stella is utterly devastating,” Emily said.
In May, Pharmac deferred its decision on whether to fund the drug while it awaited the outcome of two clinical trials – now expected by the end of the year.
The advisory group cited Spinraza’s high costs against a lack of data to prove its long-term efficacy. While the drug was “promising”, it was seen as too new to be able to prove whether its positive effects might be lasting, especially when weighed up against other conditions that also demand funding.
Having been in a wheelchair from 2 years old, suffering poor sleep, severe scoliosis and trouble breathing, having Stella wait any longer to receive the drug was incomprehensible to her mum.
“We’ve been waiting 13 years for a treatment to arrive and now that it’s finally here, it’s out of our reach.”
WHAT THEY SAID:
* “The vast majority of OECD countries fund Lynparza [ovarian cancer drug] but we do not, so what is it that Pharmac knows that all of those countries don’t?” – Rachel Brown, Ovarian Cancer NZ
* “It is devastating for New Zealand families to watch their affected children actively decline while so many other countries worldwide have found sufficient evidence to fund nusinersen [Spinraza]” – Janine Yeoman, whose granddaughter has spinal muscular atrophy
* “No one should have to fight for their lives and fight their government for the necessary treatment.” – Allyson Lock, NZ Pompe Network president
* “If they don’t get access to treatments, they don’t live,” – Philip Hope, Lung Foundation NZ