The Simpkins' health insurance will pay for Irinotecan and the private nursing care to administer both drugs, but will not fund the Avastin component of the treatment, estimated at $50,000.
The Simpkins say Pharmac is simply not keeping up with funding the most effective forms of treatment. For example, families once lobbied Pharmac to fund Temozolomide when it was new to the market and considered more effective than what was then on offer. Now, years on, other drugs are still being funded but their efficacy has been superseded by the likes of Avastin.
"By the time Avastin is funded, something better again will have come along," said Shane.
"I understand New Zealand has a budget that is only big enough to fund a certain number of medicines, but when you're at the point end of something like this, it's not a very nice position to be in. What we are able to get our hands on [in the public system] isn't the best. And the doctors there feel bad about it too.
"In years to come, Avastin probably will be funded but we need this right now."
Shane and Sam, who have two daughters aged 4 and 11 months, had earlier set up a Give A Little fundraising web page that helped pay for complementary treatments such as meditation and cancer retreats, osteopaths and homeopaths, the cost of organic foods, and more recently fees to be under the care of a US-based nutritionist who specialises in GBM.
That web page's purpose is now to help fund Shane's Avastin treatments.
And while the Simpkins are hopeful they can raise the money needed to pay for the drug, they are mindful there are other families facing the same circumstances -- having to find the money to pay for Avastin themselves or accept a less effective, but publicly funded course of treatment.
"Pharmac needs to get with the times," said Shane, a former raft guide. "They are too slow to update treatments when more effective treatments become available."
"It's so shit," added Sam. "This is people's lives we're talking about."
The Simpkins have committed to the course of Avastin and Shane had his first treatment on Wednesday.
To donate to Shane's fund, visit https://givealittle.co.nz/cause/kickingcancercampaign.
Have you faced the same circumstances at the Simpkins? Do you require treatment not funded by Pharmac? Email danielle.nicholson@nzme.co.nz with your story.
WHAT ROCHE SAYS
The distributor of Avastin in New Zealand is Roche Products. Roche general manager Lance Baldo said Avastin was "approved for a number of oncology indications" including metastatic (spreading) colorectal (bowel), kidney, breast, brain and lung cancers.
While it's an approved medicine, it's not funded at all by Pharmac.
Mr Baldo said that since 2004 Roche had submitted several applications for Avastin to be funded to treat metastatic colorectal cancer but all had been rejected.
The investment to apply for funding for a medicine is considerable and as such, it wasn't feasible for Roche to apply for funding for Avastin for the treatment of metastatic brain cancers based on the strong likelihood that it too would be rejected.
Mr Baldo said New Zealand is now the only country in the world that does not publicly fund Avastin for the treatment of metastatic colorectal cancers.
"When I took the job here as GM, I was at Roche headquarters for a briefing before I came out to New Zealand. I was told there are only two countries in world that don't publicly fund this - South Korea and New Zealand. South Korea now pays for it."
Roche operates a programme that allows more affordable access to drugs such as Avastin for Kiwis.
The person will pay for a certain number of courses of a drug and Roche will then ensure some are free.
"We cap [Avastin] after a certain price point," said Mr Baldo. "That amount is still a lot but for an average weight NZ male, it's capped at $40,000 and for an average weight female it's $36,000 - that's on weight-based dosing."
Its understood that if Shane Simpkins has a full 11 rounds of Avastin, Roche will pay for rounds 1, 5 and 11.
