Patient Support Charities. Not all they seem?

Learning that we have contracted a serious illness can be a testing time, a time when we look for support and guidance. This is the basis of the growth of patient support and health charities: if there is a serious illness, there is now almost certainly a health charity that focuses on it. What could be better at such a difficult time?

• People who have gone through similar experiences, to help them cope? 
• What is the best treatment?
• What treatments work? What treatments do not work?

Yet this simple equation is not as easy or as straightforward as it might appear. The Pharmaceutical companies understand their importance, and they have decided that they are a good way of investing money to promote their business interests.

I wrote about the issue in July 2013. There has now been further research into the scale of the problem.

               "Everyone's in the pay of Big Pharma, it seems, as new surveys reveal that doctors and patient advocacy group are getting payouts every year - and the only one in the dark is you, the patient".

This is the conclusion of a WDDTY article (May 2017), which refers to J Gen Intern Med, 2017; doi: 10.1007/s11606-017-4012-3, and N Engl J Med, 2017, 376: 880-5. Researchers at the University of Pennsylvania analyzed the finances of 104 patient support charities, and found that

• 85% admitted to getting funding from drug companies
• Of the remaining 15%, only 1 group did not receive funding from the health industry - the rest did not reveal their pharmaceutical connections!

The lead researcher, Genevieve Pham-Kanter, of Dexel university, came to this conclusion:

               "Drug companies have long known that even small gifts to physicians can be influential, and research validates the notion that they tend to induce feelings of reciprocity. But the more generous payouts are made to patient advocacy groups. Some receive up to $7.5 million in donations from Big Pharma, and a $1 million donation is not unusual".

WDDTY concluded, quite correctly, this such financial support creates a conflict of interest as many of these group advocate the use of specific drugs, or lobby regulators to get a new drug approved, whilst maintaining the fiction that it is "all for the benefit of the patient".

Of course, it is not for the benefit of patients, it is for the benefit of the drug companies, who do not spend their money unless and until they know it is a good investment! It raises an important question. How much can we trust patient support groups and health charities? The answer must be - not very much at all!

This is not new news. Nor is it news about which the mainstream media is unaware. For instance, BBC News, via the Victoria Derbyshire programme, looked into the activities of one such charity, the Hepatitis C Trust, in March 2017. It stated:

               "A charity that tried to force the NHS to buy more of an expensive hepatitis C treatment received large amounts of money from the drug's manufacturer. The Hepatitis C Trust has taken £200,000 in grant funding from US drugs giant Gilead since 2014. Last year, it unsuccessfully took NHS England to court for restricting access to the medicine on cost grounds."

Of course, the charity denied being influenced by the drugs industry, and said that it had always acted in the interests of patients.

The background to the story began in 2015 when NICE ruled it was cost-effective compared with older medicines, and NHS England set aside an extra £200m a year to pay for the drug, Sovaldi. This drug was manufactured by Gilead. It had a list price of £34,983 for a 12-week course! So the donation the drug company was making to the Hepatitis C Trust was well worth the money! 

And in addition, as far as the public was concerned, the court case had nothing to do with the pharmaceutical industry, who played no part in it. It was that 'mean' NHS, being challenged by a nice, well-intentioned charity, who only had the best interests of their patients at heart!

In such ways does the pharmaceutical industry work to generate its profits!

So what is this drug, Sovaldi. The BBC article, as usual, outlines how effective it is, straight from the drug manufacturer's publicity! It is "95% effective at curing the disease within eight weeks" we are told. If it was as effective as this the £35,000 seems a good deal! It is strange that Hepatitis C still exists, given such effectiveness! So perhaps NICE were aware of the side effects of the drug. They can be found here.

The public are being seriously misinformed about health, and the treatment of health. The conventional medical establishment is certainly not telling us the truth. The mainstream media is not telling us the whole truth. And it would appear that most patient support charities are speaking to us according to the donations they receive from the pharmaceutical industry.

Health Charities and Patient Support Groups

There are many good causes that we can support. The number of Health Charities, or Patient Support Groups, has grown enormously – it is usually possible to find a charitable organisation that has been formed to support the sufferers, and the carers of sufferers, of most diseases these days. And many of them do a good job.

Yet what is becoming apparent in recent years is that a growing number of these ‘charities’ are receiving ‘support’ from Big Pharma companies, and clearly, when this happens, the impartiality of their health advice, and the stance they take on drugs, are brought into question. Indeed, some health charities are becoming too close to drug companies, some fear little more than an extension of their marketing policy

The practice is sometimes described as "astroturfing" – which involves funding patient groups in return for promoting pro-drug messages to members who assume they are getting ‘unbiased’ information on their condition. Dr Mercola referred to a report in the New Scientist (27^th October 2006) described the practice in this way:

          “A marketing practice just as evil as exploiting sick patients with newer, better drugs far beyond their financial means: Bribing patient groups that monitor progress on specific diseases desperate for newer, better treatments with cash. The flow of cash between drug makers and patients is the theme behind this interesting and controversial report in today's New Scientist.

The magazine conducted a survey of US-based patient groups to learn what percentage of an organization's total budget was provided by drug companies. Of the 29 researched, the American Heart Association took the most funds - more than $23 million, even though that accounted only about 4% of their total budget. Those who took the biggest percentage of their income from Big Pharma were:

•  C3: Colorectal Cancer Coalition: 81%.
•  Depression and Bipolar Support Alliance: 50%.
• Restless Legs Syndrome Foundation: 44%.
• Narcolepsy Network: 35%.

Dr Mercola went on to report the other side of this picture, that is, organisations that refused to accept donations from drug or medical device companies, so it is important not to implicate every health charity in this practice

Sarah Boseley, health editor of the Guardian, expressed concern over a cancer group linked to a drug firm in an article published on 18 October 2006. In an earlier Guardian article, 29 March 2006, looking at the campaign that heralded Herceptin as a ‘wonder drug’ for breast cancer, it looked at the charity CancerBackup. It found that their latest financial statement showed that 31% of its income from companies and charitable trusts that included Roche and around 14 other major drug companies.

It said that patient groups were “the most rewarding target” and that Big Pharma companies with turnovers as large as the GDP of small nations could obviously influence these groups. It reported that the industry journal ‘Pharmaceutical Marketing’ ran an article describing how "motivated patients can move mountains and boost your drug's fortunes".

The article also reported that Liberal Democrat MP Paul Flynn has done a survey to find out which patient groups accepted drug-company money. Of 24 major organisations, only six did not do so!

From April 2006, under new industry rules, the drug companies will have to declare on their websites what money they give to patient groups. As the Guardian article said - this should make interesting reading.

WDDTY reported that one company, Glaxo-Smith-Kline (GSK), had been caught out 'astroturfing' a patients group called Ekbom Support Group, which helps advise people with restless legs syndrome. GSK's advertising included a link through to the group's website, which described the company's drug ropinirole as an effective treatment for the problem. Yet this appeared eight months before the drug was approved, and the Prescription Medicines Code of Practice Authority, which oversees drug advertising in the UK, ruled that GSK "was, in effect, directing patients to a website that contained misleading messages about the safety of ropinirole, which might indirectly encourage patients to ask their doctors to prescribe it."

An article in the Sunday Times, 3^rd December 2006, outlined how some health charities receive ‘covert’ aid from drug companies. Indeed, they were accused of doing so by Britain's chief drug regulator, Sir Michael Rawlins, chairman of NICE, who accused pharmaceutical companies of “covert and distasteful tactics in funding patient groups that campaign for wider use of the medicines they manufacture”.  NICE makes decisions about which drugs are provided by the NHS, and he warned that the industry’s sponsorship of health charities could lead to excessive pressure and unfair rulings about which medicines were made available. He is quoted as saying:

          “It is important everybody is aware that a particular patient organisation gets money from the pharmaceutical industry and that is not easy to find out at the moment. The patient group may not just receive money: the pharmaceutical company may be providing help and resources, such as the use of their PR manager. In the long term it will do the patient organisations an immense amount of damage and the confidence in their neutrality will dissipate. . . It certainly is distasteful.”

The Times article stated that the Alzheimer’s Society led a patient campaign against a NICE ruling that the dementia drugs Aricept, Reminyl and Exelon were not cost-effective and should not be paid for from public funds. Yet during the previous financial year the Alzheimer’s Society received £31,000 from Pfizer and Eisai, which sell Aricept. In the last year the society also received £13,000 from Shire Pharmaceuticals, manufacturer of Reminyl, and £14,000 from Novartis, manufacturer of Exelon.

This article was first published within the E-Book, "The Failure of Conventional Medicine".

A direct link to the chapter itself can be found here.