Can charities retain integrity when they take money from drug firms, or does he who pays the piper call the tune? Annie Kelly reports.
Earlier this year, cancer charities celebrated as the drug Herceptin, hailed as a breakthrough in the treatment of breast cancer, was made widely available to women in the early stages of the disease.
A fast track through the assessment process at the National Institute of Clinical Evidence (Nice) had followed months of public and media pressure to approve the drug, which had previously been available only to later-stage patients.
For many, including charities such as Breakthrough Breast Cancer, Cancerbackup and Breast Cancer Care, this was a victory for patient power. Sparked by a high-profile protest by cancer patient Barbara Clark, the campaign had led to a surge of women vowing to take legal action over their primary care trusts' refusal to prescribe Herceptin on cost grounds.
Jeremy Hughes, chief executive of Breakthrough Breast Cancer, believes charities have an important part to play in helping patients take control of their treatment. "If we are to have a patient-led NHS in the future, charities must play a key role in patient representation," he says. "In the case of Herceptin, the message came through loud and clear from our own research, scientists and clinicians that this was an important development.
Our campaign and advocacy networks agreed, so we felt it was appropriate to pick up this issue. We played a clear role because people wanted us to."
But what looked like an unambiguous good news story prompted questions.
For example, how far did Roche, the manufacturer of the drug, influence the patient groups that lobbied so vocally for it?
Broadcaster and academic Professor Lisa Jardine claims that, shortly after talking on BBC radio about her battle against breast cancer, she was contacted by a PR company, representing Roche, that offered her free Herceptin. When she refused, she alleges she was offered payment to speak at conferences about the drug's benefits. Roche disputes this, but Jardine is clear in her claim. "There is no doubt in my mind about what they were offering," she says. "I was horrified by the experience."
For Jardine, the Herceptin campaign highlighted important issues about the link between pharmaceutical firms and patient groups and charities.
"Herceptin is undoubtedly good for a percentage of breast cancer patients," she says. "I have a problem only with the amount of effort that drug companies put into steering patients and charities - I'd be concerned if Nice was influenced by anything other than the clinical facts."
Jardine believes there is a naivety among patients about so-called 'big pharma'. In the UK, drug companies are not allowed to advertise, but they are able to exert their influence in other ways. "Patients are very vulnerable and are not the right people to be taking the big decisions," Jardine continues. "They can be concerned only about their own survival - as such, they are incredibly open to manipulation."
A recent report by Consumers International, a global campaign group with more than 250 member organisations, seems to confirm this. Branding the Cure, which was based on detailed research, says drug companies are bypassing the ban on advertising to the public by promoting their products through patient groups, students and internet chatrooms.
Richard Lloyd, director of Consumers International, says there should be concern about the kind of companies some charities are getting into bed with. He says his group's research found evidence that many pharmaceutical companies were making "shocking" breaches of their own ethical codes.
"The public's trust in corporations is declining, and charities have to be sure they can justify taking money from companies that could routinely be disregarding their own ethical guidelines," he says. "Pharmaceutical companies are spending £32bn a year on drug promotion - double what they are putting into drug development - so of course they understand the value of endorsement by patient groups or charities."
The three charities most prominent in the Herceptin campaign - Breakthrough Breast Cancer, Breast Cancer Care and Cancerbackup - all receive funding from Roche. In the last financial year, for example, Breast Cancer Care received £154,000 from pharmaceutical companies - £80,000 of which came from Roche.
This is not unusual. Since April, drug companies have been required by law to declare the groups they fund, and Roche's website features a list of 20 charities. Paul Flynn, the Labour MP for Newport West, recently conducted a survey to find out which patient groups accept money from drug companies. He discovered that only five out of 24 major health charities did not benefit from pharmaceutical money.
"Drug companies don't need to bother about an advertising ban if they can get a patient association or charity to advertise for them," he says.
"You can't get away from the fact that a charity's ability to be objective is compromised if it takes money from companies whose primary concern is to sell as many of their drugs as possible."
Flynn believes charities not only concede independence, but also lend authenticity to the promotion of drugs by pharmaceutical firms keen to maintain inflated prices and sideline proper debate on detrimental side effects, such as some patients' increased risk of heart damage in the case of Herceptin.
"Many people are going to feel betrayed when they discover that Herceptin is not the wonder drug it's been made out to be," he says.
Mental health charity Mind is one of the few charities identified by Flynn as refusing such donations. "Pharmaceutical companies plough money into charities because they believe it will pay off in some way," says Sophie Corlett, policy director at Mind. "The voluntary sector has always played an important role in pushing private firms to conform to checks and balances, but you need to be independent to do that."
Cancer charities defending their relationships with pharmaceuticals say they are open about the money and the parameters of the relationships.
"Charities have a legal responsibility to maximise fundraising," says Hughes of Breakthrough Breast Cancer. "We must be clear about why we turn down a donation and prove it is counter to our charitable purposes."
He says Breakthrough's relationships are "100 per cent transparent and responsible", and that drug company money accounts for less than 1.5 per cent of the charity's overall income. "We would never allow our funders to influence what we do," he says. "We are always explicit about the purposes for which money has been given. If we're confident that the process is transparent and can explain what the money is for, then we can have a responsible relationship with firms."
He insists that none of the funding his charity receives from Roche was linked to activity around Herceptin, and that Breakthrough has been openly critical of Roche's tardiness in applying for a UK licence for the drug.
Breast Cancer Care also insists it is not compromised by drug company funding. It says pharmaceutical money accounts for no more than 2 per cent of overall income and that, although a relationship exists, all clinical information and patient relationships are kept entirely separate. Roche might be sponsoring one of the charity's patient packs, but the charity says it retains full editorial control. "All the information we provide is impartial," says Anna Wood, policy and campaigns manager at the charity.
"Our view on a new treatment is based on clinical evidence of its benefit to patients."
Cancerbackup, which derives almost 9 per cent of its funding from pharmaceutical companies, says that, as a charity dedicated to providing information and support, it is imperative that it supplies the most up-to-date information on new and developing treatments to cancer patients. Relationships with pharmaceutical firms, it says, can help with this.
All three charities agree that any patient association or voluntary body entering into a relationship with a pharmaceutical firm must adopt a similarly stringent approach. Strict and clear guidelines must be drawn up and mutually agreed before funding is even discussed, and all information - including a written policy outlining the terms of the partnership - should be clearly identified on the charity website.
"There needs to be a robust decision process, with a firm emphasis on identifying how this relationship is going to further your charitable purpose," says Hughes. "Everyone needs to know that charities are approaching it with their eyes wide open."
MIND OVER MONEY
The mental health charity takes no drug funds
Mind believes charities' independence is central to the voluntary sector's role in pushing private firms to conform to regulations. It has a long history of raising awareness of the side effects of psychiatric drugs and the problems patients encounter in reporting adverse reactions. After highlighting concerns about Benzodiazepine dependence in the 1980s, it decided to run a 'yellow card' scheme to survey people taking Seroxat, the antidepressant manufactured by GlaxoSmithKline.
After consulting Seroxat user groups and medical experts, the charity concluded that people taking this drug or other antidepressants were facing problems with addiction, suicidal tendencies and violence.
Mind called for an independent review of the safety of Seroxat, with a halt called on prescribing until it reported. "There were a lot of individuals going through similar experiences with no real recognition from healthcare regulatory bodies that this was an issue," says Alison Cobb, policy officer at the charity. "It was important for those bodies to alert the wider public to potential harm."
Mind worked with the BBC current affairs programme Panorama on documentaries exploring the potential dangers of Seroxat. In response, the BBC received 65,000 phone calls to a dedicated helpline and 1,300 emails.
Although Mind says it was careful to acknowledge the potential benefits of the antidepressants, the charity came under fire from other mental health bodies.
The Modern Humanities Research Association has since issued guidance on Seroxat, and Mind feels there has been an effort to raise public and patient involvement.
Spokesman Greg Page puts the company case "Breast cancer charities were at the conference where the data on Herceptin was presented last May. By their very nature, cancer charities are going to be interested in new treatments, and our understanding is that any views they form about a drug are always verified by independent sources, such as their own medical committees and cancer experts.
"We do support charities financially, but the money we give is usually to support separate activities they are already doing. Charities always retain full control over all patient information that includes references to Roche products. It's a misrepresentation that Roche was behind the patient push for greater access to Herceptin - in no way did we influence breast cancer charities to campaign. I would be surprised if they acted in a way that they didn't believe was right. They have always acted impartially and with integrity.
"There have been suggestions that those charities that receive financial support are somehow influenced by us, but Cancer Research UK, which receives no funding from Roche, was one of the strongest voices campaigning for wider access to Herceptin. It was the patients and the court cases that drove the news. When you consider that the impact of Herceptin on cancer treatment is being compared to the advent of chemotherapy, you can understand why.
"We see our support of charities as putting something back into the patient community. But if we continue to be criticised then it will be increasingly difficult for us to do this."