‘Left on the scrapheap’ — Pharmac decision bittersweet for multiple sclerosis patients
A Motueka grandmother says the national drug-buying agency is leaving her on the scrapheap with “inhumane” testing criteria for who can get a new multiple sclerosis drug.
Pharmac yesterday confirmed it will fund three new medicines it proposed covering in August for lung cancer, breast cancer and MS.
While Multiple Sclerosis New Zealand has welcomed the news the drug Ocrevus will now be publicly funded — it previously cost individuals about $24,000 a year — for the most common form of MS, it’s worried more than 600, or 15 per cent, of patients with a different form of the disease will miss out over “out-dated” criteria.
MSNZ’s national manger, Amanda Rose, said Pharmac’s rules were “inhumanely strict”, and even those with the condition covered — Relapsing Remitting Multiple Sclerosis (RRMS) — were made to annually prove they could walk 500m unaided as part of a disability scale test.
“Several leading international experts have expressed astonishment at the strict criteria MS patients here in New Zealand are subjected to.”
Motueka woman Lesley Jackson had been running her own vineyard when she was diagnosed with MS seven years ago at age 52.
Three years ago she was taken off the last drug she had been prescribed because her condition had deteriorated too much. “I feel like I’ve just been thrown on the scrapheap.”
Jackson labelled the walking test “the Pharmac walk of shame”.
“I vomited the last time I lined up for the walk and was unable to even start it,” she said. “I’ve seen grown men cry having to face it. Nowhere else in the OECD is anyone made to sit this test — it’s inhumane.”
A Pharmac spokeswoman said the agency’s experts had concluded Ocrevus was not appropriate as a treatment for all kinds of MS.
“This was largely because of the lack of data to establish both the safety and efficacy of ocrelizumab for people with primary progressive multiple sclerosis,” she said.
The agency had found other forms of testing were “impractical and would likely lead to patients stopping treatment earlier”, she said.
The drug-buying agency said yesterday it would also be funding Kadcyla — a treatment for metastatic breast cancer that was last year the focus of a petition to Parliament — with the lung cancer drug Alecensa.
All three treatments will be publicly available from December 1.
“These medicines are going to make a real difference to the lives of people who, in some cases, are living with very severe conditions and symptoms,” said Pharmac’s acting medical director, Ken Clarke.
Campaigners have for about a year been pressing the government agency to pick up the tab for Kadcyla and another drug, Ibrance, which could prolong the lives of women with advanced breast cancer, which are publicly funded in Australia.
More than 600 Kiwi women die
each year from breast cancer, NZ’s third most common form of cancer.
Malcolm Mulholland’s wife, Wiki, was among the women who last year urged politicians to fund the breast cancer medications. She’s among hundreds who can’t take Kadcyla and still await a decision about Ibrance.
Pharmac is due to make a final call on that drug by April.
“It’s a good decision that will benefit many women, not just now but in generations to come,” Mulholland said of yesterday’s announcement.
But he questions why the process has taken so long, compared with similar agencies in Australia and Britain, and only came after lobbying.
“No one should have to go through what we’ve gone through to get a drug funded,” he said.
In August he submitted a new petition to Parliament, calling for Pharmac’s budget of a billion dollars a year to be tripled within two years.
Separately, a Lung Foundation petition this year called for more funding from Pharmac, saying only about 2 per cent of the funding the agency spends on the top five cancer treatments went to lung cancer.
That’s despite the disease killing five people a day.
The foundations’ chief executive, Philip Hope, said yesterday’s decision would prevent the premature deaths of eight lung cancer patients a month.
“We still have concerns around the delay and tactics that are being used for Pharmac to finally make decisions that are in line with international standards,” he said. “Sadly New Zealand is still dragging the chain when it comes to precision treatments.”
Prime Minister Jacinda Ardern said while the Pharmac model was more effective than some of its overseas counterparts, it hadn’t always kept pace on early access to some emerging drugs.
“We are looking at whether or not we can create an early access model, something like the UK has,” she said.
But she said decisions about what drugs to fund had to ultimately come from the agency, and could not be subject to pressure from politicians or pharmaceutical companies.
The Government in June said it was putting an extra $60 million into Pharmac’s $1-billion-a-year budget. National had criticised its adding only $10m in the national Budget in May.