SPECIAL REPORT

Suppose there were a wonder drug that could not only prevent thousands of elderly people losing their sight, but also save the NHs £100 million every year? In fact, such a drug exists: Avastin. so why is the Royal National Institute of Blind people (RNIB), one of Britain’s biggest sight charities, actively campaigning against its use?

And does that opposition have anything to do with the RNIB receiving funding from the drug company behind Avastin’s more expensive rival?

The charity says it has safety concerns about Avastin. Yet experts campaigning to see this cheaper drug used on the NHs say it’s perfectly safe and as effective as the standard treatment.

Whoever is right, the row has thrown a spotlight on an uncomfortable truth: that some of Britain’s best-known health charities are risking their reputations as independent patient champions by accepting hundreds of thousands of pounds from the pharmaceutical industry.

This investigation has discovered that, in the past year alone, drug companies gave more than £8 million to more than 200 UK patient charities, some of which have lobbied the NHs to use drugs or equipment produced by their benefactors.

It’s a relationship that raises serious questions. Rather than lobbying the NHs to use certain drugs produced by the firms that fund them, shouldn’t charities be, for example, pressuring the drug companies to reduce their prices?

some charities are so concerned about the effect of such relationships on their independence that they won’t take funding from drug firms.

The row over Avastin centres on a condition called wet age-related macular degeneration (wet AMD), which causes gradual loss of central vision. It can be halted with drugs that stop the growth of blood vessels causing the problem. The approved treatment is Lucentis, developed by a subsidiary of pharmaceutical giant Roche.

Avastin (which is also owned by Roche, but was developed for cancer) works in the same way as Lucentis for wet AMD. It has been shown to be as safe and as effective as Lucentis in treating it. Crucially for the NHs, Avastin is far cheaper: if it were used instead the NHs could save £100 million a year. It’s already widely used by private patients in the uk and other parts of the world.

Yet the National Institute for Health and Care excellence (nice) will only approve drugs for the use they’ve been tested for — and when approval has been requested by the drugs firm. Both Roche and Novartis — which has the licence to sell Lucentis in more than 100 countries — have resisted calls for trials so Avastin can be licensed for the eye condition, according to a report in the British Medical Journal in April.

The report also alleged that researchers who carried out independent trials had faced ‘threats and intimidation’, and it criticised the RNIB for apparently siding with Novartis.

The RNIB said it has ‘been campaigning hard’ to stop health authorities switching to Avastin. In March, it said it was ‘delighted [its] pressure had paid off’, with commissioning groups backing down from this ‘risky, cost-cutting exercise’.

An RNIB spokesperson told us it was ‘not anti-Avastin, [but] pro-patient safety’, insisting using Avastin without a licence puts patients’ safety at risk as ‘there is currently no national guidance on how it should be prepared for use in the eye, the dosing . . . and how it should be stored’.

But is Avastin risky? An authoritative analysis by the Cochrane Collaboration, an organisation regarded as providing the highest standard in evidence-based medicine, concluded there was no difference in safety between Avastin and Lucentis — and that health policies preventing the use of Avastin on safety grounds were ‘not sustained by evidence’.

Last year, Novartis gave the RNIB £166,000. This wasn’t the charity’s largest contribution from a drug firm: Bayer, which makes treatments for eye conditions, too, donated £266,000. But the relationship between the RNIB and Novartis is especially close, as the head of external affairs and acting head of market access at Novartis UK is Barbara McLaughlan, who, until 2011, was the RNIB’s policy and campaigns manager.

Novartis told Good Health: ‘[We are] committed to supporting the important work of patient groups and working collaboratively on specific projects where there is a shared interest and benefit to patients. We strive to build relationships based on mutual respect and transparency.’

Meanwhile, the RNIB flatly denies its position on Avastin or any other issue is influenced by

‘When there’s such big money, you need to watch your back’