Herceptin: The politics of ‘Her Too’

Anybody watching Sunday night’s Panorama documentary about the ‘wonder drug’ Herceptin (1), which focused on a group of early-stage breast cancer sufferers in Staffordshire fighting to have the drug prescribed to them on the NHS, would surely have come away with their own impression as to who was most deserving of the drug.

For me, the mother of a young child and pregnant with my second, it had to be Jo-Anne Leese. This sweet, brave young woman was first diagnosed with breast cancer in her twenties; she had a mastectomy, got married, and was diagnosed with cancer in the other breast when she was six months pregnant with her first child. In order to treat her as soon as possible, doctors delivered her son 10 weeks early; at age one, he was diagnosed with cerebral palsy and Jo-Anne and her husband had been paying for Herceptin out of their own pockets. Finally, at the end of the programme, the couple was informed that the NHS would pay for the drug. ‘Give me a hug,’ she said to her husband and son.

Will Herceptin save Jo-Anne Leese’s life – or at least give her the few more years she and her husband so desperately crave? I fervently hope so. At the same time, I know that Jo-Anne’s story, and my own subjective, emotional reaction to it, should not be what drives the provision of health care in the UK. When used as a basis for public policy, this profoundly moving human interest story becomes cynical, divisive and deeply irresponsible. But what has the UK government done? Precisely that: taken the Jo-Anne Leeses of the nation, and exploited their suffering for their own cynical ends.

From the moment when health secretary Patricia Hewitt announced, in October 2005, that Herceptin would be fast-tracked through the regulatory process so that the NHS could give it to many more women with early-stage breast cancer, the debate has been characterised by emotive hyperbole and clinical confusion. A nasty moral squabble over who is the most sympathetic victim of disease, and the most deserving of treatment, has ensued. Now Ann Marie Rogers, a 54-year-old mother-of three, has begun a battle with Swindon Primary Care Trust (PCT), demanding that she be treated with Herceptin (2).

What is this all about? The story of Herceptin started out as news about a promising new drug for treating breast cancer. Trastuzumab (Herceptin), which is manufactured by Roche, is said to halve the chances of the aggressive HER-2 form of breast cancer returning. It is currently licensed in England and Wales for use in women with advanced breast cancer – where the disease has spread within the breast or to another organ. Around a fifth of breast cancers are HER-2 positive (3).

One study has suggested it could also benefit women in the early stages of the disease, but this preliminary research has not yet been confirmed, so the drug is not currently licensed for use in patients with early-stage breast cancer. Herceptin carries side-effects, some of which may be serious. It is also very expensive, costing around £20,000 for one year’s treatment.

But somewhere along the line, Herceptin stopped being a medical good news story and became a political hot potato. Women suffering from early stage breast cancer, picking up on rumours of a new wonder drug that could cure their illness if only the NHS would pay for it, campaigned for their right to receive Herceptin. Women threatened to take Primary Care Trusts (PCTs) to court unless they agreed to find their treatment with the drug; some PCTs caved in under the pressure.

Health secretary Patricia Hewitt raised the stakes by promising that Herceptin would be available to anybody who might benefit from it. In a spectacular example of government interference, in November the Department of Health intervened in a decision by a Staffordshire PCT to refuse Herceptin to one woman, Elaine Barber; the Trust backed down the next day. (A defensive press statement by Patricia Hewitt argues that ‘no one from the Department of Health asked the PCT to change their decision’ in this case. Rather, ‘In response to this decision a statement, cleared by me, reiterated that PCTs should not refuse to fund Herceptin solely on the grounds of its cost’ (4). And that’s not government pressure?). Primary Care Trusts claimed that this intervention has put them in an impossible position, unable to refuse funding Herceptin for anybody (5).

Now, Herceptin has become a household name: not as a drug, but a symbol. For patient advocacy groups, it is a symbol of the tight-fisted health authorities’ refusal to provide life-saving drugs, and the victory of ‘patient power’. For the UK government, promises of Herceptin have become the magic words to show that you feel patients’ pain – whatever is in their best interests. For the media at large, it has become the pat symbol for everything that’s wrong with the NHS – it will spend £X million on artwork, smokers, old people, but what about Herceptin for the young women dying of breast cancer? But it is worth reminding ourselves that trastuzumab (Herceptin) is, after all, just a drug; and those who seek to turn it into a bandwagon may do more harm than good.

As Sunday’s Panorama reminded us, the medical community – who, one would think, knows best about such matters – is far from confident about fast-tracking Herceptin into wider use without completing the proper trials. In a strongly-worded editorial in November 2005, the medical journal the Lancet warned that: ‘The best that can be said about Herceptin’s efficacy and safety for the treatment of early breast cancer is that the available evidence is insufficient to make reliable judgments. It is profoundly misleading to suggest, even rhetorically, that the published data may be indicative of a cure for breast cancer’ (6).

The journal went on to point to the important role played by bodies such as the National Institute for Clinical Excellence (NICE) in ‘translating research evidence into clinical guidance’, and warned: ‘It is vital that their decisions are made carefully after considering the totality of available evidence. They must be free from political, special interest, or media influence, no matter how well meaning’. It’s a little rich of the Lancet, the journal that brought us the MMR panic, to warn about the politicisation of medical issues. Having said that, it is right to make the point: the health secretary’s shameless pouncing on Herceptin to show how much the government really cares about cancer patients is deeply irresponsible, and may end up harming the very patients its policy hopes to serve.

A poignant moment in Sunday’s Panorama showed Elaine Barber, the Staffordshire woman given Herceptin by her PCT after the health secretary intervened, reacting to the news that the PCT had changed its mind. ‘My life has been saved,’ she said. But that isn’t what Herceptin does. There is something cruel about the way in which this process raises false hopes and then dashes them, appearing to offer a ‘miracle cure’ for all women diagnosed with breast cancer when the reality is that this drug that may help some women with advanced stages of a particular form of breast cancer, and as yet there is no proof of its safety or efficacy in treating early stage cancer. The beneficiaries of this crusade are the government, the drug companies, and campaign groups whose influence on this debate is notable and intrusive. The losers are cancer patients and their doctors, caught up in a media hype that does not serve their best interests.

Even if – as one hopes – Herceptin lives up to its manufacturer’s claim that it could save 1000 lives a year, significant damage has already been done to the politics and culture of the health debate. The worry that the widespread provision of one very expensive drug to more and more people, for political ends, will pull attention and resources away from other, less high-profile aspects of health care is now widely voiced.

This concern is well-founded, to the extent that PCTs do have limited budgets and we know that not all sick people have access to the very best treatment. But by bringing breast cancer further into the spotlight, the Herceptin crusade risks making the issue even more divisive – encouraging people to blame breast cancer care for their own lack of treatment, and further encourage the ‘Me Too’, ‘Him Too’, ‘Her Too’ special pleading popularised by the Herceptin campaigns.

A disturbing illustration of the depths of this divisiveness is the extent to which it pitches breast cancer patients against other cancer patients, and even against other breast cancer patients. Some women have been given Herceptin because they are deemed to be an ‘exceptional case’: they have disabled children, they have young families, they have gained a sympathetic profile in the media. This kind of arbitrariness makes talk of a ‘postcode lottery’ in healthcare seem fair and just.

Of course, individuals with breast cancer, hearing of a wonder drug, will want to do whatever they can to get hold of that drug; and to push for that is their right. But as Dr Michael Fitzpatrick has argued on spiked, that does not mean that their decisions are right. As he explained in October 2005: ‘The experience of illness is not conducive to the dispassionate enquiry necessary to make sound scientific and clinical judgements. Desperate people make poor choices – this is why the sick will always be vulnerable to charlatans’ (7).

Charlatans – and others, like the secretary of state for health, who are prepared to stamp all over medical authority and play on patients’ fears to gain some brownie-points in the media. That really is sick.

Read on:

Is this unqualified Health Secretary really helping the cancer patients?, by Mick Hume, The Times (London), 11 November 2005

Patient power can harm your health, Dr Michael Fitzpatrick, 7 October 2005

(1) Herceptin: wanting the wonder drug, Panorama

(2) Drug refusal ‘a death sentence’, BBC News, 6 February 2006

(3) Q&A: Anti-cancer drug Herceptin, BBC News, 6 February 2006

(4) Government response on Herceptin, BBC, 3 February 2006

(5) Hewitt ‘has left NHS toothless’, BBC News, 10 November 2006

(6) ‘Tread carefully on cancer drug’, BBC News, 9 November 2006