The Power of Modern Charities

Dr Vernon Coleman MB ChB DSc FRSA

‘No one survives a diagnosis of dementia.’

The quote is attributed to Hilary Evans, the chief executive of Alzheimer’s Research UK.

Did she really say that?

I suppose she must have done.

But it is NOT true.

I repeat: it is NOT true.

The Alzheimer Industry (a convenient mixture of drug companies and charities) seems determined to ignore the facts, regardless of the unnecessary fear which is produced.

I worry a good deal about the charities which are supposedly devoted to helping patients with dementia. Some of them claim that dementia is incurable and there seems to me to be a deliberate tendency to use the words dementia and Alzheimer’s as though they were interchangeable.

The media do exactly the same thing, and health reporters working for newspapers, radio and television seem determined to promote the false idea that dementia is the same as Alzheimer’s and that once a diagnosis of dementia is made then there is no hope. Consensus journalism is enormously popular everywhere these days.

The problem is that the big charities are driven by the same force as the pharmaceutical industry: money.

I have long been an enthusiastic supporter of patients’ associations – small groups set up to defend and protect the interests of patients with specific health problems. The associations provide support and information for patients and also campaign on their behalf. Back in the late 1960s and early 1970s, I compiled the first directory of patients’ associations. In those days, most such groups were small and run by volunteers – usually from someone’s kitchen table. Money was raised by organising coffee mornings and selling raffle tickets. Cash which couldn’t be raised in this way came from the wallets and handbags of volunteer organisers. Private telephones were used and newsletters were put together with a cheap copier machine and a stapler. Most of these small organisations were run on a hand to mouth basis.

And then the drug companies realised that these associations could be useful to them in a number of ways. To begin with they realised that the associations gave them a way of contacting their customers directly (without going through the prescribing doctors) and later, as the volunteers started to do local newspaper interviews to raise awareness of the illness with which they were concerned (and the association they had formed), the drug companies realised that they had discovered an excellent way to influence public opinion. Occasionally, there would be a chance for national publicity on radio or television or in a newspaper or magazine looking for a human interest story. The patients’ associations could provide patients and relatives prepared to talk about their disease to a wide public. Newly formed local radio stations and local television stations had an insatiable demand for people to talk about diseases, and the volunteers who had created patients’ associations found themselves in a powerful position.

The laws in most countries mean that drug companies are not allowed to advertise prescription only products directly to patients. Advertisements can only be aimed at the doctors prescribing the drugs. (This is why so many medical journals can make so much money.) Slowly, the drug companies which produced the pharmaceutical products these patients were taking, realised that the patients’ associations offered them a way to communicate directly with patients. Through the patients’ associations they could promote new products, they could explain why their product was better than anyone else’s and they could influence the public’s understanding of the disease concerned. Most important of all, they could use the patients’ associations to control and denigrate the drug industry’s own critics – whether the critics were alternative health practitioners or ‘rogue’ doctors drawing attention to side effects and other problems.

And so the drug companies started to approach the volunteers running small charities and to offer them financial help. It probably all seemed innocent and well-meaning. A dozen volunteers producing a newsletter for sufferers of a disease (let’s call it Godwin’s Disease because I know of no such disease) would be approached by a company (let’s call it Islington International Pharmaceuticals because I know of no such company) which happened to be the manufacturer of a drug used in the treatment of Godwin’s Disease. And the drug company would kindly offer to help.

‘We all want to help patients,’ the drug company would say. ‘You are doing terrific work and we are a kindly, philanthropic organisation so please allow us to give you £500 to help pay for printing and posting your newsletter.’

The surprised volunteers would be enormously grateful. They would enthusiastically accept the £500 and it would make life a little easier.

Then, a few weeks later, when the £500 had gone, the drug company would come back and offer a larger sum.

‘We think we can help more,’ they would say. ‘We would like to make a donation of £5,000. In return we would be pleased if you would put our logo onto your newsletter and your leaflets. This will enable us to tell the board of directors that our donation is advertising and is therefore justified.’

The volunteers would happily accept the £5,000.

And they would be hooked.

Before long, the volunteers would be working out of smart offices in the nearest town. Two or three of them would be paying themselves salaries, pension payments and expenses. And the drug company money would be essential and expected. The small charity would not be able to exist in its new form without the big cheques from Islington International Pharmaceuticals. The days of putting together a newsletter on the kitchen table would be forgotten. Sadly, the days of honesty and integrity would also be gone. The charity (for by now the volunteers would have doubtless been able to afford to register their association as a proper charity) would no longer rely on those little coffee mornings and those efforts to sell raffle tickets for a bottle of cheap wine.

This now happens all the time.

The sums involved can be quite large. And once the charity is hooked then the game is over. The drug company owns the charity and has a valuable mouthpiece.

‘One or two people are criticising our bestselling product,’ the drug company will say to one of the charity’s employees. ‘This is unreasonable and unfair and we know that support from you would help counteract the criticism.’

‘What can we do to help?’ will be the natural response. ‘Our publicity department has contacted a few television and radio people and they would love to talk to you about appearing on their programmes. They will, of course, pay you a fee and provide you with a hotel and also pay your expenses.’

And so the charity employee would go on television and radio and enjoy the fame and the little bit of (personal) money, and they would duly say whatever it was that the drug company wanted them to say. ‘Why not? We’re all working together, aren’t we?’

Many of the big charities now have very well paid executives and, of course, as they get bigger there is a risk that charities become ‘corporate’. They end up with huge administrative staffs. They pay their executives six figure salaries – with massive expense accounts and pensions.

I know of well-known charities which spend less than a quarter of their income on the cause for which they are supposed to exist. Most of their income goes on salaries and administration. They long ago lost sight of the aims which kept them sat around the kitchen table. Actually, those people have long since gone; pushed aside by the professionals.

And some of these highly paid charity executives know damned well that they would have a job finding similarly well-paid employment outside the charity sector.

So, the charity’s employees find that their aims are aligned with those of their sponsoring drug companies. And they certainly don’t have an incentive to see anyone find a cure for ‘their’ disease. Once a cure has been found, there will be no need for a campaigning charity and the drug company’s profits will collapse.

Much the same thing sort of happens in the world of animal rights.

Years ago I talked to someone working for an animal rights group and spoke with enthusiasm about putting an end to a particular variety of animal cruelty.

‘Oh we don’t actually want it to stop,’ he told me, shamelessly. ‘If it stops then we’ll be out of work.’

And, of course, as they get bigger and richer so charities find that they need to keep growing; they need to acquire more members and more support and more donations. Naturally, the bigger they get the more the drug companies like it.

I have on my desk a leaflet entitled ‘Worried about your memory?’ It is a leaflet about dementia. But the only cause of dementia which is mentioned is Alzheimer’s disease. The clear assumption is that if a patient is suffering from memory loss then they are probably suffering from Alzheimer’s disease. The leaflet, inevitably, contains an address and a website for the Alzheimer’s Society. And there is a telephone number for the Alzheimer’s Society’s National Dementia Helpline. At the bottom of the leaflet there is a slogan ‘Leading the fight against dementia. Alzheimer’s Society’.

And there is also a drug company logo announcing that the production of the leaflet has been supported by Lilly.

Eli Lilly is a drug company which claims it has been a global leader in the fight against Alzheimer’s disease for nearly 30 years. Its products include ‘seven investigational compounds to treat Alzheimer’s and two diagnostics to help better diagnose it’.

I wouldn’t expect Lilly to point out that there are many causes of memory loss other than Alzheimer’s disease.

And, sadly, nor would I expect the Alzheimer’s Society to point out that there are many other causes of memory loss.

Off the top of my head I can think of alcoholism, thyroid, kidney and liver disorders, normal pressure hydrocephalus, tumours, strokes, infections and head injury. And, of course, vitamin B12 deficiency and prescription drug side effects are almost certainly commoner causes of memory loss and confusion than Alzheimer’s disease.

And when I put ‘memory loss’ into the Google search engine, the first item which appeared was ‘Memory loss and dementia – Alzheimer’s Society’. I suppose the charity pays to dominate the search but it is, in my view, misleading patients by associating memory loss and dementia with a single, dramatically over-diagnosed disease.

I think this business of corralling patients in this way is dishonest, immoral, unethical and immensely harmful.

Taken from Dementia Myth by Vernon Coleman (Available as a paperback and an eBook on Amazon.)

Copyright Vernon Coleman 2019