The Alzheimer’s charities are in a hole but they keep digging

Earlier this week I won freelance consumer journalist of the year at the Medical Journalists’ Association awards which was fantastic. You had to send in three features to enter and two of mine each focused on a different non-drug treatment that might help with Alzheimer’s. I mention this because looking at them again I was freshly shocked by the ability of the research community to ignore non-drug options, even when the mainstream is in a seriously deep hole.

 This particular hole – 12 drugs targeting the plaques and tangles that are the hallmark of Alzheimer’s that have all failed – is filled with the astonishing and astronomical sum of 48 billion dollars. The amount the companies say that research has cost them. Surely there comes a time when common sense demands you stop digging.

But apparently not. These figures emerged at a recent conference organised by an Alzheimer’s charity in a talk candidly entitled: ‘The cost of drug development (and lack of success) over 15 years’. But the lesson the organisers took from the meeting was not to try a different approach but to ask for yet more money to encourage the companies to do more of the same.

 The dream scenario

But if they did start thinking outside the box – or the hole – what might they investigate? The dream scenario for really getting to grips with the Alzheimer’s crisis runs something like this. First you need a reliable test to tell, as early as possible, who might be developing the disease. Then, obviously, you need a treatment that can slow it down or even stop it. Just pushing back the full onset by a couple of years would save billions.

However because Alzheimer’s has a variety of causes you would want some sort of biochemical marker that would tell you which patients, whose memories and cognitive ability was beginning to fail, would benefit from the treatment to make is as targeted as possible. Finally you’d be looking for a treatment that only had a few mild side-effects since people would probably be taking it for years.

It sounds an impossible dream. Certainly not one that is likely to be realised for years and probably cost untold more billions.  However what may generate feelings of shock and surprise followed by outrage is that the outline of just such a dream scenario is already a reality.

Remarkable results

So why haven’t we heard about it? Well you have if you read one of the articles I entered for the MJA award that was published in the Daily Mail earlier this year.  It describes a carefully conducted trial – randomised, doubled blinded and all – that involved giving older people who were just starting to have memory problems, very high doses of B vitamins. The results were remarkable.

Scans showed that their brains were starting to shrink faster than normal but in those who got the vitamins, 90 per cent of that shrinkage was halted. Had that been a drug everyone would have heard about it. The analysis published this year followed on from an original study in 2010 when researchers at Oxford first showed the remarkable effect B vitamins could have.

This is the key element of the dream scenario – a plausible treatment to slow or possibly prevent Alzheimer’s developing. Even better this breakthrough came with its own bio marker that could predict who was going to benefit and who wasn’t.

The vitamins only helped those people who had a high level of an amino acid called homocysteine. The B vitamins work by lowering homocysteine levels in the blood, so if you already have a healthy level extra B vitamins won’t help. That’s two elements of the dream scenario.

 The Alzheimer’s charities did nothing

The response by the Alzheimer’s charities to this two-for one possible treatment was astonishing, probably heart-breaking if you are someone caring for a person with the disease. They did nothing. The study raised all sorts of questions, it needed to be repeated with more people for longer to see if it could stop or delay progression to Alzheimer’s.

The cost would be about six million, a vanishingly tiny fraction of those dollars in the hole. But none of the funding bodies in the UK or America could find it.

But maybe there is a problem with the mechanism. Perhaps there isn’t a good reason why having a high homocysteine could cause brain shrinkage?  However researchers at Temple University School of Medicine in Philadelphia, have described the chemical chain reaction which links the two.

 The way it works is this. Extra homocysteine in the brain damps down a process called methylation which is involved in turning genes on and off. Poorer methylation results in the production of another protein called presenilin, which in turn leads to more beta-amyloid, which causes those plaques to form. Phew!

Final part of the package

So not only does lowering homocysteine slow brain shrinkage right down it could well be doing it by stopping that plaque forming. Precisely what the drug companies has spent 48 billion dollars trying to do with those 12 failed drugs!

The third element of the dream scenario – few side effects – also features in the B vitamins option. You do have to be careful with folate and there could be harmful effects of taking high doses of B12 long term but as far as side-effect risks are concerned vitamins and drug are just not in the same league.

So what about the final part of the package – the test? The original trial was done using standard paper and pencil tests that GP’ use to predict risk. But now one of the team from the Nuffield Department of Medicine at the University of Oxford who worked on the original trial has developed a computer version, which makes it much easier and quicker to do it at home.

Called the Cognitive Function Test it takes 15-minutes online at a site  called Food for the Brain that specialises in a nutritional approach to psychiatric disorders A paper just published in the International Journal of Geriatric Psychiatry found that the computer version performed as well as the doctor’s pencil and paper tests .The advice on the site is that if your score is poor then you should talk about it with your doctor and discuss a homocysteine test.

Now of course it is possible the Bvit package, or plan B as it is being called, may turn out to have problems or need modification. But the attempt by the Alzheimer’s establishments to blank it does raise questions about whether their primary commitment is to the patients. Because they don’t just ignore this trial.

The idea that there are various life-style changes that can cut your risk of Alzheimer’s is a truism. But is any research into prevention going on? A search on the Alzheimer’s Research UK website threw up just two projects out of 140 and neither appeared to have anything to do with lifestyle. One is described as ‘developing new drug candidates to prevent the build-up of amyloid protein in the Alzheimer’s diseased brain’. The other involves analysing donated brain tissue.

It’s a point you might bear in mind the next time you are tapped for funds. Better still, what about a campaign to oblige  charities who take the public’s money to consult them about what it should be spent on? How about a campaign for the ‘Healthy Slice’ – an obligatory 15 per cent charities research budgets to be spent on nutrition and other non-drug approaches that have plausible mechanism?

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Comments

  1. Congratulations on your win. This information is so important and we need people like you writing about it and letting the public know about this! I have just started my mother on B vitamins. I have several nurses in my family and none of them see any benefit to doing this at all. If it’s not a drug prescribed by a doctor it’s not valid a treatment. The evidence is all there in black and white; I just wish they could see it.

    • Thanks for your comments. Do have a look at the book I wrote with Patrick Holford “10 Secrets of Healthy Ageing” – links on this site – which has suggestions on the questions you could ask the doctors/nurses responsible for your mother about the drugs she may be on.

      There are a number of drugs which older people should not be on without good reason; doctors are not always scrupulous about checking. There is also information about the side-effects – all too often downplayed – that can come with drugs commonly given to older people. Warnings about the ways that various foods can interfere with the action of drugs are fairly familiar – much less well known are the ways that various drugs can reduce the availability or effectiveness of various minerals and vitamins.

      For instance the diabetes drugs metformin makes vitamin B12 less available; this is one that older people are likely to be deficient in anyway. The PPI (stomach acid suppressing drugs) that are given out very freely to old people also reduce their ability to absorb B 12 as well as magnesium; the side-effects of magnesium deficiency are tricky to spot in older people as they mimic common symptoms that come with ageing.

      I’d recommend great tact when raising these topics as the discussions are unlikely to increase your popularity, although the process could well improve your mother’s health!

  2. Excellent Jerome. I read, The H Factor, by Patrick Holford in 2003. My mother had Alzheimer’s then and was in a care home. Because taking folic acid can mask pernicious anemia, the matron of the care home required the permission of my mother’s GP before she could administer a Vit B12 and folic acid supplement. I wrote to my mother’s GP, quoting the research, but she dismissed it out of hand and refused to do a blood test, so my mother never got this supplement. In retrospect I should have organised a private doctor to carry out this test but in provincial Scotland these things are easier said than done. She did receive other help however.

  3. Great blog. I think part of the problem is that the major charities are largely funded by the drug companies. so nobody wants to rock the boat.

  4. If you live in Scandinavia or Germany, where they run millions of homocysteine blood test a year, an older person is quite likely to be tested. High homocysteine not only predicts Alzheimer’s, but also risk for heart disease, stroke and osteoporosis. Despite over 17,000 published studies on homocysteine UK GPs rarely test it, and even more rarely prescribe B vitamins, especially high dose B12, which seems the most critical, needed due to decrease absorption with age, a factor which is accelerated by diabetes and antacid drugs. It’s looking like faulty methylation, indicated by raised homocysteine, and lowered by B vitamins, is central to the pattern of a number of 21st century diseases of ageing. But, with no patentable, profitable drug at the end of the chain big pharma can’t see how to capitalise on research investment. That’s why we need some of Cameron’s promised £millions for Alzheimer’s research ring-fenced for non-drug approaches.
    if you’d like to know more about our ‘ Plan B’ drop me an email at info@foodforthebrain.org. We are a lean, mean charity with a simple prevention plan that could realistically halve the incidence of Alzheimer’s but we need help (and money) to make it happen.
    And Jerome, well done on winning your Medical Journalist Award – you certainly deserve it!

  5. Anonymous says:

    Fantastic blog. I think part of the problem is that most of the major charities get sizeable amounts of money from drug companies. the Alzheimers society, for example, has corporate partnerships with a number of firms. Working in his way is the easy option. They can give money to university departments, obtain money from drug companies and show that they are lobbying hard for ‘essential’ healthcare.

  6. Jerome this is such important news- there must be a way to get this known- Avaaz ?This is world-wide issue- let’s do a petition to Cameron- after all it would save money…
    Power to your elbow
    best, annegret

  7. Brilliant as ever… and sadly true explaining the reasons for this behavior. Keep writing Jerome… Attilio

    • Seems to me that Alzheimer’s along with obesity and diabetes are essentially now public health issues rather than individual cases of bad life choices or just bad luck. The drug route to treating them is going to be unsustainable and probably not hugely effective. The sophisticated response to the B vitamin case -you can’t patent vitamins, so what do you expect? – shouldn’t be a way of closing off discussion but but the start of a discussion about how we do fund it.

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