Drug companies have finally agreed to disclose all funding they provide to NZ doctors and nurses – and some are also putting an end to undisclosed funding of advocacy groups
Dr Graeme Jarvis is sick of seeing Big Pharma vilified. Drug innovation saved his life, he says, when he was hospitalised with Type 1 diabetes at just 10 years old. “Being a Kiwi I always believe in innovation, but I’m also a patient so I do take it personally when brickbats are being thrown against patient groups,” he says.
“To be quite melodramatic, I almost died. They missed the diagnosis and I was in hospital in a semi-coma. It was pretty touch and go for a while. You know the power of medicines and doctors to pull you through, when you’ve been through something like that at the ripe old age of 10.”
But he admits drug companies have an image problem. And that’s part of the reason the chief executive of Medicines NZ, representing 19 of the biggest pharma companies operating in New Zealand, is fronting a new transparency agreement with the New Zealand Medical Association. From next year, those 19 firms will publish itemised lists on their websites of every doctor, nurse and other medical professional for whom they’ve paid a speaking fee or conference fee or hotel room or airfare – any funding at all.
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Then the next step is addressing the funding of advocacy groups, after years of headlines about the shadowy bankrolling of patient support groups that lobby for public funding for their products.
Medicines NZ doesn’t fund any patient advocacy group, Jarvis said. “And it never will on my watch, because it’s not the right thing to do.”
Most of Medicine NZ’s member companies say on their websites that they do support patient advocacy organisations. Some boast of it; some hide it in the small print.
In the UK, drug companies must make public their involvement with patients’ advocacy groups, under an industry code of practice. The British Medical Journal reported that requirement was prompted by severe criticism from the UK Parliament’s health select committee over the way the drug companies bought influence.
Jarvis said a few drug firms in New Zealand had now stopped funding advocacy groups. The remaining members would discuss formal disclosure of payments, once they had bedded in the disclosure of payments to medical professionals.
That disclosure regime has been a long time coming – Australia, the UK and the EU are just some of the regulatory systems that have had payment disclosure systems for years. “Patients can now understand the nature of these interactions and have confidence in both the ethical standards but also the patient-focus of doctors and other healthcare practitioners in New Zealand,” Jarvis said.
The New Zealand agreement doesn’t go as far as some. For instance, in Australia there’s a central, searchable database; in New Zealand each drug company will be responsible for publishing its own list.
Also, Medicines NZ represents only the the “innovative” pharmaceutical sector; those household name companies researching and developing and bringing to market new drugs, and charging accordingly. They have fought a long-running battle for Pharmac to fund their drugs, rather than lower-priced generic alternatives – and often it has been sick New Zealanders who have been at the forefront of the public campaigns to fund the drugs.
(That campaign culminates this week in Prime Minister Jacinda Ardern announcing a review of Pharmac funding, but it’s understood she is anxious to avoid wholesale changes that would reward cynical behaviour by drug firms.)
Jarvis said Medicines NZ would invite non-member companies to adopt the voluntary disclosure of payments guidelines in the spirit of public transparency and in the interests of the reputation of the wider biopharmaceutical industry
As well as the companies that make generic substitutes, some research-based companies are not members. These include Vertex Pharmaceuticals (which makes the high-profile cystic fibrosis drug Kalydeco, funded last year), Bristol-Myers Squibb (which makes cancer drug Opdivo that famously undercut the more expensive Keytruda), and Alexion Pharmaceuticals (which used a Sydney PR firm to persuade terminally-ill Kiwis to call for public funding for the $600,000-per-person drug Soliris).
But it is the big-name companies that make up Medicines NZ that have been at the centre of controversies about how they put pressure on politicians and funding agencies like Pharmac.
* Biogen was one of the big funders of the Muscular Dystrophy Association, whose members lobbied for the funding of Biogen drug Spinraza, which would have grossed the company $79.8m a year to treat about 70 people;
* 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;
* Merck Sharp and Dohme spent more than $4.7m on marketing in 2014 in New Zealand (twice what it spend on research), as cancer sufferers marched on Parliament calling for its drug Keytruda to be funded; the following year Labour leader Andrew Little hosted Medicine NZ drug company executives to a special dinner in his parliamentary offices, shortly before Labour adopted its policy to direct national drug purchaser Pharmac to fund a drug like Keytruda;
* Janssen and its parent company Johnson & Johnson fronted up prominent cancer sufferers at their Auckland conference to talk about the success of the $60,000-a-year drug Zytiga; the same company targeted male cancer sufferers with publicity materials telling them that female breast cancer sufferers got “gold standard” treatment while men with prostate cancer were “sent home to die”.
* Drug firms Janssen and Abbvie also sponsored the annual Crohn’s & Colitis NZ camp for young sufferers Crohn’s Disease, held this year at Camp Carey near Auckland in January this year. At the same time – but unrelated, they say – 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.
Losing funding would be a hit in the guts
Crohn’s & Colitis NZ chairman Dr Richard Stein has been transparent, almost to a fault. It’s questionable whether firms like Janssen would thank him for publicly volunteering that he had briefed them on plans to petition Parliament to fund their drugs, at the same time he disclosed details of their funding for the patient organisation.
But Stein is confident the funding is kept separate from his organisation’s lobbying decisions – and disclosure has been hardwired into doctors’ DNA for years, in a way it hasn’t been for the drug companies.
Stein got his undergrad degree at Columbia University in New York and his medical degree from the University of Illinois in Chicago. He practised medicine in the US, before moving to New Zealand in 2007 – so he’s seen the worst excesses of drug firms’ competition to sell their products.
“In the States, the influence of the pharmaceutical companies on professionals really was abuse,” he said. “It was a welcome step when the pharmaceutical companies, through the American Medical Association, developed guidelines. And things changed dramatically for the better.”
“We are making an effort to disassociate ourselves, or rely on other sources. And it’s more of a practical matter, because if for instance Abbvie loses their contract with Pharmac, they’ll be gone.”
– Dr Richard Stein, Crohn’s & Colitis NZ
New Zealand doctors were expected to be more transparent, he said. For a start, they were effectively limited to prescribing only Pharmac-approved drugs, so drug firms didn’t fight so hard to woo them. Doctors were required to disclose any drug funding to the hospitals they worked for. They disclosed it to the universities they did research for. They disclosed it in their published academic papers. The new agreement, he said, essentially now placed the same obligations on the drug companies that the doctors were already subject to. And that was welcome.
At present, he said, there were some conferences sponsored by drug firms, where the doctors were paid a fee to speak. “I think most doctors tend to avoid those conferences,” he said.
At the last NZ Society of Gastroenterology Conference, Dr Stein was keynote speaker – and he said he wasn’t paid for that. But Crohn’s & Colitis NZ applied to drug firm Abbvie for a grant to pay for some travel and hotel accommodation costs for him and his volunteer board members to attend the conference, in person or by Zoom. “It was strictly education and they were just reimbursed for their registration fees.”
He believed drug companies should be good corporate citizens by donating to appropriate not-for-profits – but he said it was important that funding be transparent. Three of the 20 sponsors listed on the Crohn’s & Colitis NZ webpage are drug companies – and Dr Stein said they got more from the Freemasons than from those three drug companies companies combined.
“We are making an effort to disassociate ourselves, or rely on other sources. And it’s more of a practical matter, because if for instance Abbvie loses their contract with Pharmac, they’ll be gone.”
“Janssen is committed to being open and transparent in its support of healthcare professionals and health consumer organisations.”
– Maeve Eikli, Janssen
The drug companies’ sponsorship was ringfenced for certain designated purposes, like Abbvie’s overseas nurse study award, or Crohn’s & Colitis’ annual camp. In January this year, Camp Purple Live was attended by 77 children and young people who have inflammatory bowel disease and related diseases. The week-long camp was funded with $10,000 from Abbvie, $10,000 from PharmaCo, and $20,000 from Janssen – but Dr Stein said the most significant funding was $50,000 from the Freemasons.
Janssen spokesperson Maeve Eikli provided Newsroom with a brief statement: “At Janssen New Zealand, we believe that partnering with the medical community is essential to advancing clinical care and improving patients’ lives,” a spokesperson said. “As a member of Medicines NZ, the industry association representing discovery-driven pharmaceutical companies, Janssen is committed to being open and transparent in its support of healthcare professionals and health consumer organisations (patient groups).”
Another big patient support group that accepts drug company funding is the Breast Cancer Foundation, which receives grants from Pfizer and Roche for medical education events like the foundation’s annual nurses training day, and a recent medical conference it hosted. The pharmaceutical companies had no involvement in content planning, said advocacy manager Adèle Gaultier, and company representatives did not speak at events. Sometimes – not always – the drug companies were offered a presence at foundation events, like a pull-up banner and display table.
“Being more open about it might help temper the view that drug company funding is a ‘dirty little secret’ when it’s actually pretty straightforward. If the purpose of the funding and the sum of money involved are logical and ethical, then we should all be happy to talk about it.”
– Adèle Gaultier, Breast Cancer Foundation
“Speaking for us as an NGO – rather than speaking for clinicians – this support enables us to think bigger and go wider than we otherwise would,” Gaultier said. “Given that our aim with these projects is to facilitate the sharing of best practice, reduce variation in care, and help the sector move forward with emerging technologies and treatments, the wider we can reach the better.”
The Foundation discloses on its website that it has grants from pharmaceutical firms. “We have always found pharma companies to be very hands-off once they have given us a grant, and we appreciate that,” she said. “Being more open about it might help temper the view that drug company funding is a ‘dirty little secret’ when it’s actually pretty straightforward. If the purpose of the funding and the sum of money involved are logical and ethical, then we should all be happy to talk about it.”
Like Stein, Gaultier said pharmaceutical companies should be encouraged to continue to exercise their corporate social responsibility. In her view, that meant providing no-strings-attached support for professional development for clinicians, and for enabling research and sharing of best practice to help improve health outcomes for New Zealanders.
“I appreciate that many of the medical professionals we work with feel a sensitivity in this area, it’s probably a healthy attitude,” she said. “But the very fact that they’re sensitive means they’re unlikely to do anything unethical, so they may be overly worried. If patients want to know if their doctor has received funding, then that information should be available, but I’m not sure it will make much difference to them.”
Disclosure ad nauseam?
So, if doctors and nurses are already required to disclose funding from drug companies, what does the new agreement achieve? Arguably, the disclosure register allows the medical profession to continue calling on the deep pockets of the pharmaceutical industry, rather than being forced to end its reliance on the industry’s money.
After all, drug companies stopped supplying branded ballpoint pens and notepads and conference tote bags and lanyards some years ago, to avoid perceptions of undue influence. And now, the pharmaceutical firms are standing to pull back on their funding of patient advocacy groups.
Dr Kate Baddock, chair of the New Zealand Medical Association, said the pharmaceutical industry provided sponsorship to healthcare practitioners so they could attend independent healthcare and medical education events and conferences, and the industry supplemented the limited continuing education budgets available from the public health system.
“This form of sponsorship enables New Zealand healthcare practitioners to keep in touch with the latest clinical and scientific knowledge and to undertake training opportunities that also benefit patient care.”
– Dr Kate Baddock, NZ Medical Association
“These reporting guidelines were developed by the two associations with the objective of ensuring that any financial interactions between healthcare practitioners and the biopharmaceutical Industry are more transparent and better understood by the public of New Zealand.”
It would be churlish, though, to criticise the step towards greater disclosure.
Dr Baddock argued: “This form of sponsorship enables New Zealand healthcare practitioners to keep in touch with the latest clinical and scientific knowledge and to undertake training opportunities that also benefit patient care and the New Zealand health system.”
An example is Dr Chris Jackson. He wears quite a few different hats. He is medical director of the Cancer Society of New Zealand. He is clinical leader for oncology research at Dunedin Hospital, with special interest in gastrointestinal cancers, melanoma and urological cancers; he holds a national role in the research and management of colorectal cancer. He is a senior lecturer at the University of Otago, and has published academic articles and book chapters on gastrointestinal cancers and lymphoma.
“Others would see things that happen in the US, where some very high profile doctors get paid tens of thousands of dollars a year to advocate for drugs on behalf of the companies, as very concerning.”
– Dr Chris Jackson
Right now, he is at the business end of a lengthy study into a new oral chemotherapy drug (paclitaxel, branded as Oraxol) that is being developed by New York-based biopharmaceutical company Athenex.
Athenex doesn’t pay him as lead investigator, he explains. That’s part of his university role. It does pay the costs of the research (for instance, paying for medical scans for the participants) and it paid about $5000 for him to travel to a major oncology conference in Chicago, to present the research.
(No, he doesn’t get given Athenex branded ballpoint pens: “I write with an OfficeMax pen!”)
He’s disclosed the travel funding. He’s disclosed it to the university, he’s disclosed it to the hospital, he’s disclosed it to the academic journals … he thinks the new regime will have minimal impact on the way doctors practice. But he said it was important that drug companies, too, were required to disclose such funding.
“Many people would see that type of arrangement as fairly inconsequential. Whereas others would see things that happen in the US, where some very high profile doctors get paid tens of thousands of dollars a year to advocate for drugs on behalf of the companies, as very concerning. So there’s a spectrum of financial relationships between practitioners and companies, and in New Zealand the weight has always been favoured disclosure.”
The new reporting system will require the public disclosure of more information than is required by academia and the medical profession. For instance, the sum of money involved will have to be publicly disclosed in the future.
“The Cancer Society has historically turned down donations from pharmaceutical companies, and other entities that could give rise to any perceived conflicts of interest eg tobacco, alcohol.”
– Lucy Elwood, Cancer Society
Requiring the disclosure of funding provided to advocacy groups would be a bigger step, Dr Jackson argued. In his view, there were too many small support groups – about 200 cancer charities in New Zealand – and the smaller ones were forced to turn to drug companies for funding. He would prefer they didn’t.
“Many of those are set up by people with excellent intentions from strong personal experience of cancer, and as they look for ways to stay viable, they will look for any means of financial support. For some the only way to do that is private sector funding, which means the drug companies. I think that certainly does the potential to colour their agenda, which I think it potentially very problematic.”
But he said even the over-arching Cancer Society was forced, in last year’s downturn, to take drug company cash.
Lucy Elwood, the society’s chief executive, said the two donations – $30,000 from Merck Sharpe Dohme and $5,000 from Pfizer – were tagged to a website redevelopment project. “The Cancer Society has historically turned down donations from pharmaceutical companies, and other entities that could give rise to any perceived conflicts of interest eg tobacco, alcohol,” she said.
So last year’s donations were a first, and they had grant agreements clarifying what they were spending the funds on. That was to help both the Cancer Society and the pharmaceutical companies show corporate responsibility that they were meeting ethical business responsibilities. “This was important to all parties,” Elwood added.
“I’m not concerned about a perception of conflict of interest because of the processes we have in place at the Cancer Society and also the robust ethical business practices that are in place at the pharmaceutical companies. Transparency is part of that.
“The Cancer Society advocates for a fairer and faster Pharmac system. From time to time we may be asked to comment on individual decisions (eg Keytruda), but our focus in such cases is the process and system changes that we think are needed.”
“Pharmac have been working hard on improving our own transparency and it’s great to see the NZ Medical Association and Medicines NZ recognising the need to do the same.”
– Sarah Fitt, Pharmac
And indeed, Pharmac is welcoming the new steps towards greater transparency.
Pharmac chief executive Sarah Fitt said the government drug-buying agency supported the new disclosure agreement, and wanted to congratulate the Medical Association and Medicines NZ for their joint work. “Pharmac have been working hard on improving our own transparency and it’s great to see the NZ Medical Association and Medicines NZ recognising the need to do the same,” Fitt said.