Comment: “There is no story here, no funding, no influence.” That text message from PR agency boss Sean Brown (son of Mayor Wayne) landed at 10.14pm Thursday. It’s language that will typically aggravate any journalist – being told by a communications consultant what is and isn’t a story.
But bear with me, because this editorial is going to end, unexpectedly, with me and Sean Brown in furious agreement.
The message was part of a string of phone calls, emails and texts that followed a robust interview with his discounted client, Blood Cancer NZ chief executive Tim Edmonds, speaking on behalf of 17 patient organisations trying to put drug funding on the election agenda.
Edmonds explains how the agency hired the heritage-listed Shed 10 from Auckland Council, again at a discounted rate, to put on an “installation” called the Forbidden Pharmacy.
This highlights a list of drugs the group wants Pharmac to fully fund.
That list is compiled by Pharmac, and in confidence, it’s ranked. It’s called the ‘Options for investment list’, and as of this morning, it contains more than 110 drugs, for 162 on-label uses.
This group of patient advocacy organisations has extended its wish list to 200 drugs.
To fund these, the group would like the Government to increase the country’s drug-buying budget from 0.4 percent of GDP to the OECD average of 1.4 percent or beyond.
That’s an extra $4.5 billion a year.
They’re getting campaigning politicians through the doors of Shed 10 on Friday, as well as journalists. It opens to the public on Saturday.
What is astroturfing?
My first question – born out of years of jaded critical observation of the marketing strategies of the pharmaceutical industry, here and overseas – was what behind-the-scenes influence the drug companies had on this sophisticated political campaign?
Because time and time again, we’ve seen drug companies encouraging and supporting advocacy groups to lobby for funding.
It’s called astroturfing – when corporate interests help drive what looks to be a grassroots movement. I’ve investigated many occasions on which pharma companies have provided funding or pro bono support to enable sick patients to march on Parliament, or gain the interest of TV reporters, to put their case.
It might be okay if they were transparent. But they rarely are.
In 2013, I reported a campaign by sufferers of PNH, an extremely uncommon blood and immune system disorder; one of their group led the TV news and was on the front page of the papers saying her life had been saved by a $500,000 “miracle” drug called Soliris. I discovered the campaign had been secretly orchestrated by Viva, a Sydney PR firm that represented the drug’s manufacturer, Alexion Pharmaceuticals.
In 2014, we discovered global drug giant Janssen had teamed up with the Prostate Cancer Foundation and a PR firm to persuade the Government to fund its $60,000-a-year drug Zytiga. They cynically set up a health funding battle between men and women, claiming breast cancer sufferers received “gold standard” treatment but men with prostate cancer were “sent home to die”.
The same year, Labour leader Andrew Little hosted Medicine NZ drug company executives to a special dinner in his parliamentary offices, shortly before Labour adopted a policy to direct national drug purchaser Pharmac to fund a drug like Keytruda.
In 2015, the Sunday Star-Times reported that Roche NZ discounted its $100,000-a-year drug Kadcyla for patients, who then volunteered to speak in the media calling for public funding for the drug.
In 2018, Biogen was one of the big funders of the Muscular Dystrophy Association, whose members lobbied for the funding of Biogen drug Spinraza, which Stuff reported would have grossed the company $79.8 million a year to treat about 70 people.
In 2021, drug firms Janssen and AbbVie sponsored the annual camp for young sufferers of Crohn’s Disease. Soon after, Crohn’s & Colitis NZ marched on Pharmac and Parliament with a petition for the funding of ustekinumab, sold by Janssen under the brand name Stelara.
You see the pattern emerging.
This is not just New Zealand. In the UK, an Observer investigation found that of 173 drug appraisals conducted by the National Institute for Health and Care Excellence, 138 involved patient groups with a financial link to the maker of the drug.
British drug companies must now make public their involvement with patients’ advocacy groups, under an industry code of practice. This was prompted by severe criticism from the UK Parliament’s health select committee over the way the drug companies bought influence.
In Europe and Scandinavia, the pharmaceutical industry pours €110m (NZ$217m) into advocacy organisations, investigations show. Last year, a study by three universities concluded that patient organisations and charities across Europe were at risk of aligning their interests with their corporate funders even when that didn’t benefit their members.
Across the Tasman, a Medicines Australia report advised that working with patient groups could help drug companies secure support when applying for public funding for their products.
So care really is needed.
Out from the rabbit hole
The patients who are calling for funding are sick and often dying. It is right that we should listen to their public pleas. It is wrong that they should be exploited by drug companies to make those public pleas.
Sometimes, I’ve been at risk of going down a bit of a rabbit hole on this issue – but that’s okay for a journalist, as long as you know how and when to climb back out again. This is one such occasion.
I ask Tim Edmonds if the grouping of creative and public relations agencies who had volunteered their pro-bono or subsidised services also have among their clients some of the world’s biggest drug companies – companies like Merck, Novartis and Janssen/Johnson & Johnson. Yet while that may have been true of the agencies’ parent or sister companies in the US, UK or Australia, that’s not the case here.
So I’m climbing back up out of that particular rabbit hole – but I’m still writing this editorial, because this lobbying campaign still raises wider questions to which we need to be vigilant.
Many (not all) of these patient advocacy groups are sponsored by highly motivated drug companies. Some use those resources to run campaigns for public funding of drugs – campaigns that are legitimate, maybe even worthy, but not entirely transparent.
For instance, in the group of 17 patient advocacy organisations behind this installation, both the Breast Cancer Aotearoa Coalition and the Breast Cancer Foundation disclose Merck and Pfizer sponsorship; the Gut Cancer Foundation has support from Roche, Merck, Bristol Myers and a couple more; Melanoma NZ has been backed by Merck, at least one Migraine Foundation project by AbbVie, and Rare Disorders NZ has a “roundtable” of 13 drug companies.
Rare Disorders NZ spokesperson Angela Nielsen says those 13 firms pay an annual fee to the patient advocacy group. “The companies have no influence on Rare Disorders NZ’s advocacy work, activities, projects or events,” she adds. “Our financial contribution to The Forbidden Pharmacy was made up of donations from our patient community, not in any way by pharmaceutical companies, directly or indirectly.”
Tim Edmonds expands on this. “There are several organisations that do not receive funding from pharmaceutical organisations,” he says. “And all of those organisations also receive donations from the public, and it’s that support that is helping make this campaign possible.”
Fine. I ask him why he is just advocating for more public funding – funding that would go directly and in its entirety to the pharmaceutical firms. Why is he not publicly demanding these drug companies take a notch from their margins to discount their high-priced products, rather than demanding taxpayers bear the inflated cost?
Why is he not leading a protest to the corporate offices of Merck, which made $31b profit last year? Its drug Keytruda is already funded for certain stages of melanoma, lung cancer and breast cancer, but advocates want that extended to other stages and cancers. It features in the Forbidden Pharmacy as costing patients $10,000 per treatment cycle.
Or to Roche, which made a $46b profit? Its cancer drug Avastin is funded for some eye conditions, ovarian cancer and liver cancer, but not for advanced ovarian and cervical cancer, nor for metastatic bowel cancer and brain tumors. It costs patients $1600 a dose, according to the Forbidden Pharmacy display.
As a patient advocate, why is he not advocating to the drug companies to cut these high prices that are at the centre of this week’s campaign? “It’s not a space that we ever get into,” he replies. “My role is to support patients to advocate for access to the medicines that they need.
I press him on the question of whether the drug firms should also come to the party. “Of course, the better the prices, the more medicines that can be funded, and we all want that. So we really hope that Pharmac can negotiate the best possible prices, and want the industry to be responsive to providing the best possible prices.”
Funding decisions shouldn’t be politicised
I have enormous sympathy for the pain of these patients and their families. If I had a loved one who was desperately sick, and in need of an expensive unfunded drug, then I too would probably be marching on Parliament.
And I too would be lobbying my local MP, the health ministers, the Prime Minister, anyone who would take my call, to fund whatever million-dollar drug would help….
That’s why it shouldn’t be my decision. It shouldn’t be a political decision. It shouldn’t be election fodder.
There is no bottomless budget. So the decisions about which drugs to fund should be based on good cost-benefit analyses; the drug purchases should be hammered out by our toughest negotiators so that New Zealand gets as many of the best and most important drugs as possible.
And actually, that’s what happens. Those clinical experts and negotiators work for Pharmac, and do a terrific job of haggling across entire portfolios of drugs.
They’re strategic. When skin cancer sufferers delivered a 45,000-signature petition to Parliament in 2016 asking that the Merck drug Keytruda be funded, Pharmac didn’t respond publicly to the pressure from politicians.
But behind the scenes, they negotiated with both Merck and with Bristol Myers Squibb, which made the competing drug Opdivo. They were able to secure and announce funding for Opdivo at a good price – at which point Merck backed down and finally agreed to accept a realistic offer for Keytruda. In short, New Zealand patients got two good drugs, not just one, and at less cost to the public purse.
So when Edmonds and others say that the New Zealand Government is spending less than other countries on pharmaceuticals, they’re mostly correct – but that’s partly because we’re negotiating better prices.
And we also get more bang for our buck by using fewer branded drugs and more generics: the OECD says generics accounted for more than three-quarters of the volume of pharmaceuticals sold in New Zealand, similar to the high rates in Canada, the UK, Netherlands and Germany.
If you listened only to the patient advocacy groups, you’d think New Zealand was a cheapskate in its public funding for healthcare. In fact, the New Zealand Government spends more than the OECD average. And patients don’t have to dip so far into their own pockets as if they lived in most other countries.
According to last year’s OECD Health at a Glance report, the New Zealand Government spent an average US$6097 per person on health in 2023 – that puts us in the top half of developed nations, above the average of $5967. (The spend ranges from $1588 in Mexico, to $14,885 in the USA.)
But the public spending is distributed differently. A significantly smaller share of the big New Zealand health budget goes to pharmaceuticals; a larger share goes to specialists and doctors and nurses. We spend more on primary care and public health, so people are less likely to get sick in the first place and need million-dollar drugs.
Are we getting results for our spending? Without wanting to overstate it, there is at least one metric where New Zealand excels: our self-reported health is the best in the OECD. That is, we feel healthier than people in other countries, and that counts for a lot.
This is all complicated and hard to put in a newspaper headline; far easier to run a picture of a sick person pleading for the Government to fund the drug they need.
Sean Brown and his team are indeed fronting up a breast cancer sufferer to media this week, to argue for more pharmaceuticals funding.
This is where it gets real, and uncomfortable. I haven’t talked to her. It wouldn’t be fair of me to drag her into this particular debate. She didn’t ask for this. She faces paying about $64,000 for the unfunded drug Enhertu, developed and commercialised by AstraZeneca.
Here’s where Brown and I agree.
We want to ensure patients get better access to healthcare – medicines, or clinical care – that help save and improve lives. That’s where there is a story.
