Healthy Skepticism Library item: 2477

Warning: This library includes all items relevant to health product marketing that we are aware of regardless of quality. Often we do not agree with all or part of the contents.

Publication type: news

Corbett J.
Drug pushers - the campaign for Glivec funding
New Zealand Herald 2002 Oct 26
http://www.nzherald.co.nz/storydisplay.cfm?storyID=3001076

Abstract:

In New Zealand, a year-long emotional $100,000 public relations campaign, ‘Save the 90’, was used to persuade the Government drug funding agency, Pharmac, to fund the expensive drug Glivec (Novartis) for chronic myeloid leukaemia at a cost of $60,000 per person per year.

Keywords:
*feature story New Zealand Glivec Novartis public relations PROMOTION BY THIRD PARTIES: PATIENT ORGANIZATIONS PROMOTIONAL TECHNIQUES: PUBLIC RELATIONS

Full text:

JAN CORBETT uncovers a tale of drugs, power, money, life and death in the campaign to help to save 90 people with a rare cancer.

Jim Hamilton is feeling pleased with himself, and why shouldn’t he? He and his tiny charity are on the cusp of declaring victory in a year-long and very public $100,000 campaign to shame the Government’s drug-funding agency, Pharmac, into funding Glivec, an expensive drug that benefits a small number of people – a formula Pharmac does not normally go for.

The diminutive Scotsman could not be happier.

Public relations specialist Elsbeth Hardie is feeling satisfied, too. Sipping tea on the patio of her Parnell home, she says “the reason I’ve survived and feel good about myself” is that she delivers information about new treatments to patients who might not otherwise know about them.

Hey, it’s not like she’s pushing tobacco. The public relations strategy behind Glivec was largely hers and, as she says, it was very successful. The drug certainly commanded print space and television air time out of all proportion to the number of people it affected.

Dr Peter Browett, however, swivels in his chair in his Auckland Medical School office, and worries aloud. Maybe he was naive to become associated with a public relations campaign. Yet he is confident his integrity has not been compromised. He could see the potential conflicts of interest from the start, declared them where necessary and managed them well.

Certainly, if he had not been so determined about it, New Zealanders with the rare form of a rare disease – chronic myeloid leukaemia (CML) – might still be denied this holy grail of cancer treatments.

As he says, our struggling health system has become one where the squeaky wheels get oiled.

You probably know about Glivec, which is telling in itself. At least if you cannot name it, you will have some notion of an expensive cancer drug that Pharmac refused to finance and which prompted an emotional election campaign, Save the 90.

On Wednesday it is expected Pharmac’s board will finally agree to fund the drug under a confidential agreement with its manufacturer.

On the surface the Glivec story might look like a shining example of how a multinational billion-dollar drug company can manipulate public opinion to the point where the Government caves in and pays for the drug, while the wily drug company makes even more millions out of our ill health and our taxes.

But like medicine itself, the issues are not that simple. What the Glivec story illustrates is the complex relationship between health and profit, between drug companies and medical research, and between government policy, patient groups and public relations.

It is a tangled web whose backdrop is a health system where funding lags ever further behind medicine’s ability to control disease – a situation that exists to varying degrees in every developed country.

P ETER BROWETT is both a haematologist at Auckland Hospital and researcher across the road at the Medical School. He arrives late with a sandwich pack – this is his only chance in the day to eat lunch.

His cellphone rings. A colleague is calling with a patient’s blood test results. Browett curses and is clearly deflated. He flatly issues instructions to use all available treatments, but his tone is pessimistic.

That he and his patients might not get access to all available treatments, or that as a researcher he is not involved at the cutting edge of new developments, is unacceptable to him.

Which is why he became so closely involved in Glivec. Browett read about this remarkable new drug in the international medical literature in the late 1990s. Developed by Swiss-based drug company Novartis, Glivec targets the abnormal Philadelphia chromosome most commonly found in CML, blocking the enzyme that causes the proliferation of leukaemia cells.

It is essentially the first cancer treatment that goes after only the rogue cells, causing fewer side-effects and controlling the disease in patients where traditional treatments fail.

Browett could see getting involved in the clinical trials was not only important academically but was also “a way of accessing the treatment early”.

But Novartis was reluctant to invest in clinical trials here because, says managing director Andrew Moore, “the current environment in New Zealand is not conducive to research investment by pharmaceutical companies”. Clearly if Pharmac is going to play hardball over financing drugs, the drug companies will play hardball about spending money on them here.

Browett pressured Novartis’ Australian-based medical director until finally the company agreed. Seven patients with newly diagnosed CML entered the randomised trial. Four were given Glivec, the other three stayed on the traditional treatment, Interferon.

The results for those on Glivec were so profound that it was deemed unethical not to offer it to all the patients in the trial.

By then Glivec was already in the news. A natural symbiosis exists between medical breakthroughs and the media. They make for compelling human interest stories and the researchers are happy to co-operate because publicity is helpful when it comes to the next funding round. Such reports serve the university’s increasing emphasis on commercialising its research and raising its profile. When one of their own features in a story, it is pinned on a noticeboard in the Medical School’s foyer.

Glivec didn’t seem to need the intervention of a public relations company to make it to the front page of the Herald in April last year. Reporter Katherine Hoby was interested in doing a story on leukaemia, was referred to Browett who contacted a woman in the trial, Carol Clarke, and ask her if she would be interviewed. Browett says he makes these approaches reluctantly, always cautioning patients about surrendering their privacy.

Despite the drug’s natural gift for publicity, Novartis still employed a formalised public relations strategy. Moore believed employing public relations experts was important to “ensure information flow is managed in a professional manner and that accurate consistent information reaches the public”.

Hardie, who contracts to public relations firm Porter Novelli, became fully involved with Glivec from the middle of that year, six months before it was registered for use here. Her role, she says, “was to make doctors and the public aware of how Glivec had been developed and how significant that was.

“We did that through the news media.”

The strategy was similar to one used widely around the world – first you sell the disease, then you sell the drug. Hardie describes how the first step “was to talk about leukaemia, what the impact and cost of it is in New Zealand. You need to talk about the bigger picture. Then you talk about this fantastic new drug, the most effective cancer drug ever developed. That’s a powerful story.”

Because a drug cannot be promoted to the public before it is registered, they set up websites about the drug’s results that were fully accessible only by doctors.

“We did a good job with Glivec. But the stars were in alignment. It’s a fantastic drug.”

But why do we all need to know about a drug that’s of use to about 90 people in this country who develop CML each year and fall under the care of a small group of haematologists who are familiar with the advances in treatment?

Hardie says the public relations role with pharmaceuticals is not about creating demand, but “harnessing the demand that’s there”. Doctors, she says, sometimes forget their patients want to know all the options and information.

And although she doubts Pharmac is vulnerable to public pressure, she admits the importance of “drawing attention to it so it becomes a funding priority”.

For a drug like Glivec, which is priced at around $60,000 a patient a year – and once you are on it, you don’t come off – no public funding would mean no income for the drug company, because few people could afford to pay for it themselves. And Glivec is important to Novartis, not only because it heralds a new generation in cancer treatment, but because it marks a startling turnaround for a company that six years ago was moribund.

By the time Novartis was ready to head to Wellington last October to present its case for Glivec to be registered here, Browett was happy to get on the plane with them, at their expense, and support their case.

That he is such a passionate advocate for Glivec was certainly helpful to the public relations campaign. He acknowledges “it’s rare for doctors to go public unless they’re passionate about something”, and he was prepared to go public “because it was a significant breakthrough in cancer therapy”. What doctor who deals with cancer victims daily would not be excited by that?

Not only is Browett the lead researcher for the New Zealand arm of the clinical trials, he is also president of the Haematological Society, a member of Novartis’ advisory group on Glivec, and is on the medical committee of the Leukaemia and Blood Foundation.

But apart from taking a plane ride with them and advocating for the drug, he says he is careful about maintaining his independence from Novartis, although he realises without them he would not have had his clinical trials. Drug company-sponsored trials bring funding into the university and the medical school. Because his position is tenured, Browett does not receive funding directly. Nor is he paid an honorarium for being on Novartis’ Glivec advisory board – he realised that could compromise his independence.

Yet his press releases denouncing Pharmac’s decision to initially fund the drug only for patients with advanced disease were issued by Novartis’ public relations firm Porter Novelli. He wonders if he was a little naive to do that, but is confident he has maintained his integrity.

He is certainly not starry-eyed about drug companies. “The big pharmaceutical companies are here to make money,” he declares. “They’re no angels.”

Because of the drug’s outstanding performance at controlling CML, registration was fast-tracked here, just as it was in the US. The hitch was that Pharmac refused to fund it for anyone but the most advanced cases, when clinicians argued it is most effective in the early stages.

News of its limited funding inspired the Leukaemia and Blood Foundation to open a second, more overt public relations front.

Executive director Jim Hamilton knows about drug companies. He came to New Zealand for a job with one. He went on to become the chief executive of Amcal Chemists, before heading TVNZ Enterprises. He has a naturally charming gift for pushing the right emotional buttons to generate the right publicity.

That makes him perfect for a foundation that is always trying to raise money to assist people with leukaemia and distinguish itself from the Cancer Society.

Whether publicity about a new drug is generated by public relations or genuine public interest is not an argument Hamilton needs to spend much time on. It’s the effect that concerns him – patients are tantalised by a new drug that the funding agency is refusing to pay for. He says once they heard about Glivec, the foundation was besieged with leukaemia sufferers wanting to know how they could get it.

Hamilton says he doesn’t care how expensive Glivec is. All he knows is that people are suffering and there is a drug that can restore their quality of life and enhance their chances of survival.

As executive director of the foundation it’s his job to fight on their behalf. And fight he did. Not only did he lobby Novartis, encouraging them to reach an agreement with Pharmac but, in a move similar to a Glivec campaign run by equivalent patient bodies in other countries where it also faced funding resistance, the foundation drafted letters for patients, their friends and family to send to Pharmac and their MP.

The foundation also made passionate submissions to Pharmac. In its most dramatic move, it launched the Save the 90 campaign to coincide with the general election and run like an election campaign – billboards and a website where people could vote for Glivec funding. The idea, says Hamilton, grew out of discussions within the foundation and was then developed by advertising agency Generator Bates.

And through all this the foundation used the services of a public relations firm – Porter Novelli.

Hamilton insists it was the foundation who sought the firm out, not the other way around. He says they were chosen for their expertise in the health sector and political lobbying. Unlike Novartis, which uses the Auckland branch, the foundation used the Wellington branch of Porter Novelli, which he considered sufficient to guarantee separation between the interests of the drug company and the foundation, although clearly their interests were the same.

At no time, Hamilton insists, did Novartis pay any of the bills for the Save the 90 campaign, although along with a number of other drug companies, it makes small donations to the foundation.

Southland farmer and CML sufferer Paul Goodwin agreed to Hamilton’s request to front the Save the 90 campaign. Although Browett says no one relishes parading patients on billboards, Goodwin says he has no regrets.

Already Novartis was supplying Glivec free to 30 CML patients through its extended access programme that operated in other countries but was slow to start here because, says Moore, of supply problems. The effect was a considerable heightening of emotions. Novartis would put a deadline on the free supply, prompting Pharmac to accuse it of being unethical. In response the company accused Pharmac of being unethical for delaying a funding decision.

N OW, in the expectation that Pharmac’s board will next week approve funding for all who will benefit from Glivec, Hardie, the staff at Porter Novelli and Hamilton have every right to congratulate themselves on a job well done. Browett says although he cannot describe the mechanism for how public pressure translates to political pressure translates to a change of heart by Pharmac, he is certain that is what happened.

But inside Pharmac’s Wellington headquarters, chief executive Wayne McNee thinks they are fooling themselves. He calls the Save the 90 campaign “a complete waste of money”. It also ties up Pharmac resources responding to the correspondence and media inquiries.

But then he would say that, wouldn’t he? Not so, he counters. Pharmac is lobbied routinely, usually with little effect. If Pharmac had not been able to reach an agreement on price with Novartis it would still be refusing to fund it and, conversely, if Novartis thought the campaign would be successful, they wouldn’t have negotiated.

Pharmac is also agreeing to extend Glivec funding to people with a particular type of gastrointestinal tumour, for which it is effective. Notably, says Pharmac spokesman Simon England, those patients do not have a lobby group agitating for them – Pharmac identified that need all on its own.

What McNee admits was useful was the consultation with clinicians and the foundation, which he says swayed their thinking about financing Glivec for use in earlier stages of the disease. Five thousand hits on a website, he says, had no effect.

If McNee has any regrets about the Glivec saga, it is that Pharmac did not negotiate on price sooner. The confidential deal involves a bundle of Novartis drugs, suggesting they give discounts and rebates on other drugs in return for Glivec funding. Deals like this allow Pharmac to control its budget and Novartis to go to its head office and say, “In New Zealand we got the price we asked for”.

Novartis says Glivec is so expensive because of the cost of developing it and its effectiveness. McNee thinks it might have more to do with the fact that there is such a small market for it.

Goodwin considers the price the drug company’s prerogative. “I’m just thankful we’ve got a drug at any price. What price a life?”

Adelaide-based Dr Peter Mansfield, director of Healthy Skepticism, an organisation that promotes responsible drug marketing, says this of the Glivec experience in New Zealand: “If patient groups are allowing themselves to be used as pawns to help drug companies get away with overpricing then, regardless of naive good intentions, they are harming the very people they seek to benefit. They would do better to lobby the drug company to reduce the prices internationally.”

That campaigns to fund drugs are always directed at the Government and Pharmac, and never at the drug company surely attests to the triumph of public relations.