Big Pharma tugs on heartstrings
It’s had a very quiet start. You may not have even noticed it. The latest campaign to fund the next ‘‘gamechanger’’ miracle drug seems to have begun in New Zealand earlier this year, just before an application was lodged with Pharmac to fund spinal muscular atrophy (SMA) drug Spinraza – made by Biogen (remember that company’s name).
Tales of heartbreak involving children suffering some form of muscular atrophy have been drip-fed throughout the year in various publications, including this one.
However, a detail that appears to have been largely glossed over in New Zealand is that the early development of this drug at least, was largely paid for through university research grants from the Cure SMA charity.
What we’re dealing with is a drug which had much of its development bankrolled by the American taxpayer, its makers purchasing the US$75 million (NZ$111m) licence after phase three trials proved it was a likely winner, and then deciding the price of life should be somewhere in the vicinity of US$750,000. Now, here’s the kicker. Muscular Dystrophy Association New Zealand does a brilliant job of promoting the families to New Zealand news publications, as that may well be their only chance to apply pressure on Pharmac for funding.
The organisation is a charity which draws its funding from a number of different places, including corporate sponsorship. At the top of its supporters list? Biogen.
It’s among dozens of other donors, but it’s there on a webpage, accessible to anyone who cares to take the dive and look. But it has not been mentioned in a single interview or piece of reporting that advocates for this funding.
Because these stories are designed to subtly direct public anger at Pharmac for ‘‘denying’’ patients the drug.
In fairness to the drug’s maker, spinal muscular atrophy is what’s known as an ‘‘orphan disease’’, which in the US is defined as affecting fewer than 200,000 people. In New Zealand, about 70 people are thought to have the condition. Funding here alone would earn the company up to $79.8m – nearly the equivalent of its licensing fee.
Funding has been granted in a number of markets far larger than New Zealand’s, while a number of countries declined initial funding, citing the price as ‘‘unethically high’’. Globally, Biogen cleared US$12.2 billion in revenue last year.
Most recently, the UK’s version of Pharmac declined to fund the drug, acknowledging that while evidence showed ‘‘significant benefits’’ to patients there were still ‘‘significant uncertainties’’ around long-term benefits. Coupled with Spinraza’s ‘‘extremely high’’ cost, it could not be recommended as a cost-effective treatment option.
Pharmac will be considering the drug for funding, this month, under its rare disorders fund. Spinraza’s application will be considered alongside funding for 13 other new medicines, for conditions such as Fabry disease, Pompe disease, cystic fibrosis and Gaucher disease.
Every reasonable New Zealander understands why they can’t all be funded.
So which would you choose?
Funding has been granted in a number of markets far larger than New Zealand’s, while a number of countries declined initial funding, citing the price as unethically high.