Should health charities stop taking cash from drug firms?

As blindness charity is accused of helping pharmacy giant block cheap drug that could help thousands . . .

pharmaceutical funding, which, it says, accounts for no more than 0.5 per cent of its income.

‘Our independence is critically important,’ says the spokesperson. ‘We accept some may believe we should turn down this funding, but we believe we have a responsibility to use the resources available to prevent unnecessary sight loss.’

This is in stark contrast to the stance of another sight charity, the Macular Society, which stopped taking money from the drugs industry in 2008 — because the Avastin/Lucentis debate had become ‘exceptionally toxic’, says Cathy Yelf, the charity’s CEO. The society ‘preferred to be transparently independent of industry, so it could voice its opinion without any suspicion there were hidden motives’.

The RNIB is far from the only health charity in the difficult position of appearing to support the commercial interests of its industry backers while campaigning for patient treatments.

Last year, the Multiple Sclerosis Society marked its awareness week with a campaign to ensure all 100,000 UK MS patients have access on the NHS to a range of new, but expensive, drugs. Due to strict conditions imposed by NICE, access was ‘abysmally low’, said the charity.

These new drugs aren’t cheap. One approved by NICE, teriflunomide (brand name: Aubagio), costs £13,529 per patient per year. Access to two other new treatments, Sativex and Fampyra, had been blocked by NICE for being too expensive.

Unsurprisingly, it’s the quality of life of its members that concerns the MS Society, not the cost of the treatments to the NHS. ‘There are effective treatments that can alleviate symptoms,’ says Michelle Mitchell, the charity’s CEO. ‘That’s why we are campaigning hard on this important issue. We make no apologies for this.’

However, although the society states on its campaign website it receives money from the drugs industry, it doesn’t spell out that five of the newly NICE-approved drugs it is lobbying to see more widely used (Lemtrada, Gilenya, Tecfidera, Tysabri and Aubagio) are produced by three firms it gets the bulk of its industry funding from: Genzyme gave £46,000, Biogen £36,000 and Novartis £30,000. Only after Good Health examined the society’s annual report, cross-checked against the drugs produced by the companies in question, did the potential conflict of interest emerge.

Ms Mitchell points out that less than 0.5 per cent of the charity’s income is from pharmaceutical companies. ‘Our independence is very important to us, and we have strict policies in place to ensure we protect it,’ she adds.

The drug firms point to the fact that these drugs are licensed for the patients — so they’ve been deemed good value for money for the NHS.

Diabetes UK is another health charity that accepts drug firm funding: £934,215 in 2012 to 2013 or 2.4 per cent of its annual income. Its relationship with the industry goes back years.

In 1992, when it was the British Diabetic Association (BDA), industry funding was at the centre of a row that divided the charity after it buried a report critical of new, synthetic insulin products being produced by firms including Novo Nordisk.

Until then, diabetes was treated exclusively with animal insulin, which began to be phased out. The synthetic versions were cheaper to make, but thousands wrote to the BDA to say they were having problems with the new drugs, such as no longer getting early warning signs their sugar levels had dropped dangerously low.

In 1992, the BDA commissioned an independent report, but refused to publish it on the grounds it was ‘too alarmist’. Two trustees resigned in protest and set up the Insulin Dependent Diabetes Trust (IDDT).

Jenny Hirst, who was on the BDA committee formed to discuss the problem, says: ‘It wasn’t alarmist; it told the truth about what people were experiencing.’ Hirst, who was awarded an MBE last year for her campaign for patients to continue receiving animal insulin, believes the charity pulled its punches with the industry over the switch to synthetic as ‘it was getting quite a lot of money from the drug companies’. As a result, the IDDT has never accepted drugs company money ‘in order to remain uninfluenced’.

Novo Nordisk, leading manufacturer of synthetic insulin, told us it was ‘committed to transparency in financial relationships with . . . healthcare organisations’, but declined to say whether it funded the BDA at the time of the report. A Diabetes UK spokesperson said ‘it was highly likely’ it had funded the charity then, but that ‘any suggestion we were unduly influenced . . . was completely wrong’.

Still, the question remains: why are charities that receive such funding so coy about the amounts they receive?

Let’s take Diabetes UK as an example: while its last annual report thanked six pharmaceutical firms that made ‘a significant contribution, donation or gift in kind’, it did not say how much each gave.

To find out, you have to visit the websites of the drug companies, who, since 2011, have been bound by the code of practice of the Association of British Pharmaceutical Industries (ABPI) to list all payments to patient groups. This reveals that, last year, the biggest single funder to Diabetes UK was Novo Nordisk at £363,000.

Of the 200-plus charities that received funding from drug firms, the biggest recipients include Diabetes UK (£813,000), Cancer Research UK (£418,000), the British Lung Foundation (£245,000), Asthma UK (£181,000) and the Stroke Association (£154,000). The charities stress these are often only a small percentage of income and that ‘strict’ funding policies protect them against accusations of bias. Not surprisingly, the largest drugs firms tend to give the most to charities: Novartis and Pfizer each gave around £1.1 million in the past year. The firms insist they do so as they are good corporate neighbours. Novo Nordisk, for example, says it is ‘committed to doing everything we can to improve treatment of diseases’. But if that’s all there is to it, why, as one charity claims, did such funding dramatically decline after the new ABPI transparency rules meant they had to declare donations?

Tim Statham, CEO of the National Kidney Federation, told us: ‘The level of support pharmaceutical companies give has dropped away over the past five years, purely because of the ABPI code of conduct.’ Five years ago, his charity was receiving £250,000 a year; now, it is less than £100,000. The ABPI said it ‘disagrees with the inference’, blaming ‘ an unprecedented period of economic uncertainty’.

But Mr Statham adds: ‘When there is such big money, you need to watch your back: you could find yourself doing things for a pharmaceutical company rather than patients.’ When he joined the charity 16 years ago, it was funded by one company: ‘ an untenable situation . . . I didn’t want to be in a position where they . . . could call the shots’.

It seems there’s an ethical line between charities happy to accept funding and those who think doing so may compromise their independence. Among the refuseniks is the British Heart Foundation: it told us it refused such funding as it ‘could create the impression we were biased’. This ‘could undermine our role as an independent voice for patients’.

Mental health charity Mind is as cautious. ‘People need to be able to trust that information we give about medication is in no way influenced by the firms we work with,’ says Paul Farmer, the charity’s CEO.

Does it matter if a charity takes cash from a firm while campaigning for use of its products if everyone benefits?

Angela Coulter, healthcare researcher at Oxford University and director of global initiatives at the Informed Medical Decisions Foundation thinks so.

‘Directly promoting a product to the public is quite dodgy,’ she says. ‘We have a mechanism for assessing the value of treatments: NICE.’ She adds: ‘Many charities are naive. . .they should strive to give independent advice, but not about specific treatments.

‘If they get funding from a firm that stands to benefit, they should be even more cautious. Charities can’t claim to represent the public if they represent the interests of industry.’

‘People need to be able to trust what we say’