Paul Easton
Lives torn apart by cruel diseases, new drugs kept from patients by bean-counting bureaucrats. That’s the tear-jerking message from the pharmaceutical companies lurking behind PR campaigns that seek to get their products in NZ. With a new range of superex
BIG DRUG companies, says Helena McAlpine, are ‘‘absolutely taking the piss’’. The margins on their products are indefensible. If anyone has a right to an opinion on the matter, it’s her. McAlpine was first told she had breast cancer in 2009. Two years later, she received the grim news the disease had spread to her upper skeleton.
Now, it’s a clear winter day in Auckland. Sitting in her backyard in Ponsonby, McAlpine pulls her grey woollen cape around her shoulders. Her chocolate labrador cross Murphy looks soulfully into her eyes.
‘‘All things considered, I feel OK,’’ the 35-year-old TV broadcaster says. ‘‘But secondary breast cancer is non-curable, so it will eventually kill me.’’
Despite being given a few months to live, she continued to fight with oral chemotherapy at home. The drugs cost hundreds of thousands of dollars.
Fortunately, she is supported by a good man. She met Chris Barton well after her diagnosis, and the couple plan to marry in December. ‘‘It’s amazing, it’s such a weird and crazy thing to have this incredibly good-looking man in my life regardless of the fact I will die before him and that it’s not going to be pretty,’’ she marvels.
Fortunately, too, she took out personal health insurance a year before her diagnosis, which paid for ‘‘hundreds of thousands of dollars’’ worth of procedures and cancer medication.
One in nine women will be diagnosed with breast cancer – seven women a day. In New Zealand, most are at the mercy of Pharmac, the Government drugfunding agency . . . and the public money goes only so far.
In coming months, the Government’s drug budget will come under even more pressure, with a range of super-expensive drugs on the horizon.
PR campaigns backed by pharmaceutical firms are now commonplace, Pharmac says, as the companies peddle medicine that may help chronic disease sufferers, but at a cost of hundreds of thousands a year per patient.
Former C4 presenter McAlpine is
It’s amazing, it’s such a weird and crazy thing to have this incredibly goodlooking man in my life regardless of the fact I will die before him and that it’s not going to be pretty. Helena McAlpine
not one to see the negative side. But even she was livid when she saw a front-page report in the Sunday Star-Times last weekend.
It revealed global drug giant Janssen Pharmaceuticals had teamed up with the Prostate Cancer Foundation, a PR firm, and terminally ill men in an attempt to persuade the Government to fund its $60,000-a-year drug Zytiga. The pitch 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’’.
A press release from the foundation exclaimed: ‘‘New Zealand prides itself on equality, but NOT all things are equal, especially in men’s health.’’
Seminars in Wellington, Auckland and Christchurch, spoke of ‘‘levelling the playing field’’ between men’s and women’s cancer care.
The approach was criticised as a beat-up by senior researchers, and McAlpine says the marketing tactic made her ‘‘very angry’’.
‘‘They think we’re children in a playground, well we’re f...ing not, this is a serious thing.It’s incredibly frustrating that they’d choose to take this approach. Everybody, regardless of their sex, deserves the absolute best chance of survival. They seem to be suggesting breast cancer sufferers somehow have it easy because they’ve got all the money.’’
People with breast cancer fought to get funding for Herceptin, McAlpine says. ‘‘It was a long process before that happened. For people with prostate cancer, their time will come.’’
JANSSEN PHARMACEUTICALS (an offshoot of Johnson & Johnson) is a drug giant that backs campaigns all over the world. It recently ran a push in the UK for the prostate cancer drug, but it was rejected as too expensive at $5800 per patient per month.
Pharmac faced a PR blitz last year as it considered a funding application for eculizumab, brand name Soliris, a drug that treats the rare blood disease Paroxysmal Nocturnal Hemoglobinuria (PNH). The drug costs around $670,000 per patient per year. The disease affects around a dozen Kiwis.
Australian firm PR Viva Communications led a campaign, backed by Alexion Pharmaceuticals, highlighting the plight of sufferers stricken with blood clots, high blood pressure and organ failure as PNH attacked their red blood cells. Alexion is a Nasdaq-listed firm that makes more than $1 billion from global sales of Soliris.
In December, Pharmac declined the funding application, saying Alexion’s price was too high. ‘‘Even if we assumed that eculizumab was 100 per cent effective and guaranteed patients were restored to full health with normal life expectancy, at the price offered, eculizumab would still be about 20 times less cost-effective than the average medicine funded by Pharmac over the past two years.’’
That’s cold comfort to PNH sufferer Daniel Webby, who spearheaded a campaign to get the Government to negotiate a deal with Alexion.
The Auckland artist was diagnosed with PNH in 2011 after suffering chronic fatigue for several years. The chronic form of the disease comes with a median survival of around 10 years.
Pharmac’s refusal to fund Soliris is frustrating, and reflects an inflexible attitude towards rare diseases that were expensive to treat, he says. ‘‘They do tend not to fund these rare conditions. It’s a one-size-fits-all approach.’’
He also slams a system where very ill people are forced to battle red tape, rather than focus on getting better.
Soliris works by halting the destructive mechanism of PNH, Webby, 33, says.
‘‘This has immediate consequences for restored quality of life, reduced pain and fatigue and longer term, prevents the likelihood of fatal complications like renal failure, blood clots.’’
He doubts Pharmac ever seriously considered funding the drug. ‘‘In my view, Pharmac needs to be more accountable to the New Zealand public than they currently are and until this changes . . . should not be surprised to see patient groups seeking support from drug companies, NGOs, international patient organisations and health economists to further a fairly simply agenda. Leaving patients to die when effective medicines are available is not an acceptable outcome.’’
No part of the health system looks out for the best interests of patients when it came to accessing medicine, Webby says. ‘‘The Ministry of Health sets a medicines budget, Pharmac spends it, politicians say they can’t get involved, clinicians are censured if they choose to speak out.’’
Drug companies were not involved with the formation of the PNH Support Association in 2012, he says. ‘‘It was October when I was contacted by someone from the Canadian patient support group who introduced me to Alexion – the first contact.’’
Alexion hooked them up with Viva Communications, which helped draft material for the media.
‘‘We made use of the media relations company to around March of 2013 and when their involvement became the focus of some media attention, I sought help from an ex-journalist who offered her time free of charge.
‘‘Without the help of professionals early on we wouldn’t have been able to generate the level of awareness that we did.
‘‘Do I feel that Alexion manipulated patients? Not at all – they maintained distance from our activities at all times. Do I think drug companies are wonderful benevolent entities that operate on principles of altruism and goodwill? No. I wish ‘return on investment’ was not a factor in the pricing of the drug, but that is not the world we live in.’’
Pharmac chief executive Steffan Crausaz says PR campaigns sponsored by drug companies are common. It’s Pharmac’s job to look for the source of such campaigns and consider funding applications objectively, he says.
There is an ‘‘ever-increasing’’ volume of medicines and prices. ‘‘This year was the biggest ever in terms of tenders received.’’
Pharmac was established in 1993 to rein in rocketing drug costs and distance the Government from drug-buying decisions.
Its task is a balancing act – even a $795m annual budget will not cover the drug demands of all.
Pharmac decides if a drug gets funding by assessing the ‘‘QualityAdjusted Life Years’’ that the drug can deliver per million dollars spent. Priority is given to those drugs that deliver the best value for money. For complex decisions, such as whether to approve superexpensive drugs, decisions are sent to the Pharmac board.
Pharmac is seeing the emergence of more and more super-expensive medicines, Crausaz says.
One example is sofosbuvir, used to treat Hepatitis C. A full course costs $239,000 a year per patient – more than $1000 a pill. Across the country, that would cost Pharmac $90m a year, far exceeding its yearly budget for new medicines, to treat just a few hundred sufferers. Another expensive drug on the horizon is ivacaftor, used to treat cystic fibrosis. At more than $370,000 a year per patient, it is one of the world’s most expensive pills, despite its development through a partnership between a charity and a drug company.
Pharmac’s overall challenge is to get the best health outcome for the most New Zealanders, Crausaz says.
Globally New Zealand is a tiny player, representing just 0.1 per cent of the pharmaceutical market.
Yet Pharmac pays some of the lowest prices in the world for medicines, using a combination of tendering and negotiations to encourage competition between drug companies.
‘‘It’s about understanding how to get them to compete with one another to get the best prices. You have to be prepared to walk away from the negotiating table. Healthy competition is the lifeblood of being able to manage the system in a sustainable way.’’
Crausaz accepts that pharmaceutical companies back patient groups to get their drugs on New Zealand shelves. The interests of the two groups often align: patients want access to drugs, and companies want access to the marketplace. ‘‘The pharmaceutical industry spends huge quantities of money developing drugs which can benefit all of us. Theirs is a commercial model and their concern is to maximise the return to their shareholders.’’
Pharmac is working on a contestable process that could make up to $5m available each year to fund medicines for rare disorders – defined as a prevalence of less than one in 50,000. However John Forman, executive director of the New Zealand Organisation for Rare Disorders, says between $20m and $25m would be needed. ‘‘It’s not their fault, but it seems set up to fail.’’
Meanwhile, Janssen Pharmaceuticals says it is not backing down from its association with the Prostate Cancer Foundation of New Zealand.
Janssen’s relationship with PCFNZ is ‘‘transparent’’ and its support for the education sessions is open, a spokesman says. In a dramatic change of corporate tone from the battle lines drawn last week, the he added: ‘‘We admire the achievements of all cancer organisations, including breast cancer, in their ongoing work to improve outcomes for New Zealanders.’’
Janssen had not issued any statements about zytiga, ‘‘but has been working closely with Pharmac to ensure it has all the information required to achieve its reimbursement’’, he said.
University of Auckland philosophy associate professor Tim Dare says centralised drug assessment and purchasing through Pharmac, combined with careful assessment by independent panels, is of ‘‘enormous benefit for New Zealanders’’.
‘‘We should not allow financially focused, self-interested pharmaceutical interests to subvert that process.’’
Helena McAlpine, for one, has no time for pleas of poverty from the pharmaceutical companies.
‘‘If they can afford to develop it, they can afford to distribute it,’’ she says. ‘‘At the end of the day these companies have a shed-load of money.’’