'Left on the scrapheap': Pharmac decision bittersweet for MS patients

Pharmac has confirmed it will fund Kadcyla and two other treatments.

A Motueka grandmother says the national drug-buying agency is abandoning her on the scrapheap with "inhumane" testing criteria for who can get a new multiple sclerosis drug.

Pharmac on Monday confirmed it would fund three new medicines it proposed covering in August for lung cancer, breast cancer and multiple sclerosis.

While Multiple Sclerosis New Zealand has welcomed the announcement that 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 what it says are "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 500 metres 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," she said.

Motueka woman Lesley Jackson had been running her own vineyard when she was diagnosed with MS seven years ago at age 52.

Motueka woman Lesley Jackson has criticised what she calls the Pharmac "Walk of Shame". Photo / Supplied

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," she said.

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."

In a statement, 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.

She said the agency had found other forms of testing were "impractical and would likely lead to patients stopping treatment earlier".

The drug-buying agency announced on Monday it would also be funding Kadcyla – a treatment for metastatic breast cancer that was in 2018 subject to a petition to Parliament – along 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," Pharmac's acting medical director Ken Clarke said.

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, the nation'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 are still waiting on 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 Monday's decision.

But he questions why the process has taken so long, compared to 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 billion-dollar-a-year budget to be tripled within two years.

Separately, the Lung Foundation this year launched a petition calling for more funding from Pharmac, saying only about 2 per cent of the funding Pharmac 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 Monday's decision would prevent the premature deaths of eight lung cancer patients a month.

"We still have concerns around the unnecessary delay and tactics being used by Pharmac before they finally make decisions in line with international standards," he said.

"Sadly, New Zealand is still dragging the chain when it comes to providing access 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 announced it was putting an extra $60 million into Pharmac's billion-dollar-a-year budget. That came after criticism from the Opposition that it had only increased the agency's funding by $10 million in the national Budget in May .