health & science

Lack of transparency hampers cancer drug debate

Analysis: Those on both sides of the great drug funding debate say the other needs to be more transparent in their agenda and their processes. They’re both right.

Last week, a global study ranked New Zealand the worst in access to funded modern medicines of 20 OECD countries.

Out of 304 modern medicines funded internationally, between 2011 and 2017, only 17 were funded in New Zealand.

This latest report has added fuel to the raging debate over medicines funding in New Zealand, and criticism of Pharmac’s budget and process.

What wasn’t mentioned in media reports was that the report was not only commissioned by pharmaceutical lobby group Medicines NZ, it was also carried out by US multinational IQVA.The global provider of analytics and contract research to the medicines industry is an associate member of Medicines NZ.

Medicines NZ is an association representing the pharmaceutical industry, with global companies and suppliers like giants GlaxoSmithKline, Pfizer, Merk Sharpe and Dohme and Sanofi.

Last year, Medicines NZ’s member subscriptions accounted for $979,506 in 2018.

The findings of the IQVIA report aren’t disputed but Pharmac does push back against almost all international comparisons, saying New Zealand’s model is unique, making it hard to compare.

Everyone in this space has an agenda, including drug companies, patients, Pharmac and the Government.

The problem lies in the lack of transparency around where the money is coming from, who is behind the campaigns, and who stands to gain.

The current debate over drug funding, and especially cancer drug funding, is emotional and messy. This lack of clarity adds to that problem.

The New Zealand market accounts for a minuscule portion of the drug companies' earnings, but it's seen as an important case study, especially as the United States discusses an overhaul of its system.

The debate has ramped up in recent months, with the sharing of more personal patient stories, a raft of petitions to the Health Select Committee, and a renewed focus from political parties.

At the National Party annual conference last month, Simon Bridges unveiled his party’s cancer policy, which includes a $200m fund ring-fenced for Pharmac to fund cancer medicines. It also includes the establishment of an independent cancer agency – outside the Ministry of Health.

Meanwhile, the Government has announced a $25m plan to replace 12 linear accelerators, used in radiation treatment.

And before the end of the month, Health Minister David Clark will unveil the Government’s interim cancer plan, after the previous government’s three-year plan lapsed in 2018.

While the political parties are creating their policy, the drug companies and patient advocates are doing whatever they can to be heard, in an effort to get their drugs funded.

Sponsored content

In recent months, Newshub has run a series of health stories sponsored by Priorities NZ. The sponsored content focused on patient stories, with the common theme of calls for unfunded medicines, treatment or devices.

Priorities NZ is owned and managed by Medicines NZ, something that was not declared by Newshub.

Newshub’s labelling of the content, and level of transparency regarding Priorities NZ’s links to pharmaceutical companies were questioned on social media.

When the issue was raised in June, Newshub told NZ Doctor all sponsored content was clearly marked, but the media company had added further attribution, which stated priorities NZ was part of Medicines NZ.

Newshub has since deleted all the articles sponsored by Priorities NZ.

A screenshot of Newshub's sponsored content, before being deleted. Photo: Twitter/@publicaddress

"We have strict guidelines when it comes to sponsored content on Newshub and in order to be completely transparent to our audience, all sponsored content is clearly marked as such,” a spokesperson told Newsroom in a statement.

“Following a recent review of these guidelines, existing content that was sponsored by Priorities NZ was removed as it no longer met our required standards.”

Medicines NZ chief executive Graeme Jarvis said it was clear who owned and managed the Priorities NZ website, adding that the information on the site was “robust and factually correct”.

“Medicines New Zealand has for many years been providing factual information and publications to allow for an open and balanced discussion on the topic of medicines and modern medicines access in New Zealand.”

But that lack of declaration by Newshub and Priorities NZ led to confusion over the content, who was behind it, and their agenda. While the information may have been robust and factual, questions around independence and transparency led to legitimate questioning of the veracity of the stories.

Jarvis said New Zealand was at a crossroads, when it came to drug funding. And recent political focus has had an impact on public awareness of the issues, including how this country compared to others.

Petitions

A mounting pile of patient petitions have also been putting pressure on Pharmac.

The rallies on Parliament steps and petitions have dominated headlines in recent months. Patient groups have been organising, in order to present a united voice and draw on experiences of others, for maximum effect.

Since the Government took office at the end of 2017, there have been 13 petitions calling for Pharmac to fund specific medicines, and 11 have been received since the start of May.

A further petition has called for an inquiry into the adequacy of Pharmac’s patient safety protocols with generic medications, and the other a high-profile petition from Blair Vining – a Southland dad with stage-four terminal bowel cancer - asks for the creation of a national cancer agency.

On Thursday, a further nine petitions were launched by new patient lobby group Patient Voice Aotearoa (PVA). The person leading that charge is Malcolm Mulholland.

Mulholland’s wife Wiki has advanced breast cancer, and he has been advocating for the funding of Ibrance, which prologues life for advanced breast cancer sufferers.

Mulholland said cancer care was in crisis, and New Zealand's funding of medicines was dropping further behind other countries as the advance of modern medicine led to an explosion of treatment options.

After discussions with other campaigners, PVA registered as a charitable trust in July. Other trustees include Aarabella Gubay (she has a daughter with epilepsy), Fiona Tolich (she has spinal muscular atrophy), Philip Hope (head of the Lung Cancer Foundation) and Leisa Renwick (Melanoma survivor and Keytruda campaigner).

PVA has also been associated with medicines NZ in online discussions, but it does not receive any funding from the lobby group. Mulholland said the trustees don't get a dime.

But PVA is given access to Medicines NZ's research and information.

Mulholland said there was no issue with the independence of the research produced or disseminated by Medicines NZ, adding that it was so difficult to get information from Pharmac, this was the only option.

PVA's mission was for advocates to work together to get the best possible outcomes for patients.

Making hard decisions 

Pharmac chief executive Sarah Fitt is used to being the target of criticism but she stands firmly behind the model, explaining it’s not a good use of taxpayer money to fund every medicine.

“We want to fund medicines, that’s what we get up here to do. But it is hard."

That was the reality of the fixed budget model. This year, Pharmac has just shy of $1 billion, with a portion of that going to new cancer drugs.

“But there are a lot of people out there who you don’t hear from, going through just as equally an awful time… There are a lot of people who don’t have a voice, and you have to do best by the whole population.”

Fitt said it was difficult hearing the patient stories, "people forget this is real for us too". And she listened to every health select committee petitions hearing – “I owe it to them”.

“But there are a lot of people out there who you don’t hear from, going through just as equally an awful time… There are a lot of people who don’t have a voice, and you have to do best by the whole population.”

Fitt said campaigns mounted by pharmaceutical lobby groups or patient advocates was nothing new.

The companies were trying to sell a product, and the patients would mount whatever campaign they could to try and get a result.

"And the reality is if we were in their situation, we’d do exactly the same.”

But when it came to declaring interests and transparency of processes, Fitt believed both sides needed to do better. "It's a two-way thing," she said.

Health Minister David Clark says the public has every right to question Pharmac, but he's not convinced the same level of scrutiny is applied to private industry. Photo: Lynn Grieveson

In a move welcomed by all sides, Pharmac is implementing its ‘faster, clearer, simpler’ model - something pushed by chair Steve Maharey, after discussions about transparency with the health minister. 

This includes a new online portal with more accessible information and allowed for patients to have input into decision-making from a far earlier stage.

Other changes included speeding up decision-making timeframes, and making meeting minutes publicly available faster, and in a simpler format.

Pharmac will now also decline applications, to give patients and suppliers more certainty. Until recently, an application was not officially declined because the evidence could change. Now medicines will be declined, with the ability for it to be reconsidered if the situation changes.

Fitt said the process had been “a bit closed” until now, and while it wasn’t intentional, there was a push to remove barriers to understanding and communication.

Question of balanced scrutiny

David Clark told Newsroom there had been considerable scrutiny of Pharmac and its decision-making process, which was fair enough.

“The public has every right to ask whether public agencies are delivering.”

Pharmac was the reason New Zealanders had access to some of the cheapest medicines in the world, which meant New Zealand could afford more drugs for more people, he said, adding that he believed the model had proven its worth.

“It’s important that we don’t undermine the strengths of Pharmac… including its independence and its ability to negotiate a good deal from the pharmaceutical companies.”

Meanwhile, the pharmaceutical industry pushed hard to get its products publicly funded, including through paid content on news websites and funding lobby groups.

“That is all perfectly legal, but I’m not convinced there is the same level of scrutiny applied to the industry that there is to government agencies,” Clark said.

“On the other hand, I’m not critical at all of the sorts of support that is provided by pharmaceutical companies in order to get the message out. They’re effectively in the business of selling their product, I don’t begrudge them that.”

National Party health spokesman Michael Woodhouse agreed for the need for greater transparency in this space.

New Zealanders did not understand the degree to which pharmaceutical companies were supporting advocates, he said.

“On the other hand, I’m not critical at all of the sorts of support that is provided by pharmaceutical companies in order to get the message out.

“They’re effectively in the business of selling their product, I don’t begrudge them that.”

Those dying of cancer were desperate, and would latch onto hope at any price, which was an understandable human emotion.

“I think the drug companies know that and they play in that emotional space much more than in the logical space. But the counter-balance to that is Pharmac, and its medical experts.”

Pharmac needed to carry out the dispassionate analysis of how good a drug was and how much it costs, in the form of a “speedy and honest appraisal”.

“I think the basic building blocks of a really good system is there, and we just have to keep improving that. And money is a big part of that,” he said.

* Tomorrow’s report on the great cancer debate will look at the specific calls for change, and what to expect from the Government’s cancer announcement.

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