People who lose their sight – macular degeneration


The world is going dark for thousands of elderly people because we won’t let clinicians make independent decisions

What has gone wrong with our priorities, when we can allow comparatively affluent people to have essentially cosmetic operations on the NHS – wart removal, tattoo removal, varicose veins – and yet we cannot find the cash to save an old man’s sight?

and it is … wrong that life-prolonging medicines of all kinds are available free in Scotland – subsidised by the taxpayers of England – and yet are denied to the English on grounds of expense.

How can Hewitt turn a blind eye?

Imagine the terror of going blind.

Think what it must be like to lose the most vital of your senses, and to lose it rapidly. First it becomes difficult to judge distances, and you have to give up the car. Then you can’t quite make out the newspaper as well as you used to, and then you can’t read it at all; and then even the television becomes invisible, and you can no longer see your wife; and you must be able to see her because apart from anything else you are her chief carer and she is severely disabled.


Imagine the shock of then being separated from her, even though you have spent a lifetime together, because in the view of the state you are no longer fit to look after her.

That is the impending fate of Dennis Devier, 83, who lives in my constituency. What has been so appalling to those of us trying to help him is the discovery that there are thousands – at least 16,000 elderly people – who are going blind because they cannot get a cheap treatment that is readily available in other countries, from Germany to Mexico to Pakistan.

These British people are losing their sight not just because of NHS underfunding, but mainly because of the incompetence and statism of the system. The world is going dark for thousands of elderly people because we won’t let clinicians make independent decisions, and because of the indifference of the Government to an electorally insignificant minority.

Mr Devier fought in the RAF. He has contributed to the NHS all his life, and yet he has no choice – if he wants to save his sight, and if he wants to stay with his wife – but to dig ever deeper into his dwindling savings and pay for exorbitantly expensive private treatment.

Today, he is due to have another injection in an eye, in the hope of alleviating his wet macular degeneration. That injection alone will cost £1,793. In an effort to save his sight, he has now spent approaching £8,000, and he is not a rich man.

I suppose it is irrelevant that he once risked his life for his country, but I find it utterly incredible that we are posing these alternatives to a man at his time of life – cough up, or say goodbye to your eyes.

What has gone wrong with our priorities, when we can allow comparatively affluent people to have essentially cosmetic operations on the NHS – wart removal, tattoo removal, varicose veins – and yet we cannot find the cash to save an old man’s sight?

It is bad enough that we live in an age of the postcode lottery, and that there are people over the river in Berkshire who are getting the injections free, on the NHS. It is outrageous that Oxfordshire has the lowest per capita health funding, receiving only 85 per cent of the per capita funding of the next most cash-starved area; and it is, of course, wrong that life-prolonging medicines of all kinds are available free in Scotland – subsidised by the taxpayers of England – and yet are denied to the English on grounds of expense.

But the real scandal is the way the political masters of the health service are so supine in dealing with drug companies and in getting a good deal for patients.

Today Mr Devier will be injected with Lucentis, a drug which is made by the prodigious Californian company Genentech, said to be the very originator of the biotechnology industry.

Genentech has annual revenues of more than $9 billion and a net income of more than $2 billion per year. Though I have no complaint about that whatever – I applaud the proceeds of capitalism – I make these points to show that Genentech is not short of a bob or two, unlike Mr Devier, and that it is important that we strike the best possible bargain on behalf of people in his position.

Genentech makes another drug, Avastin, and though Avastin is technically a cancer drug, it is now widely agreed to be just as good as Lucentis at treating wet macular degeneration.

I talked to Michael Lavin, a consultant surgeon in Manchester, who is sad and amazed to see how many elderly British people are going blind because of the lack of a cheap alternative to Lucentis. “All retinal specialists are agreed that the two drugs are equally good at treating the condition,” he said.

There are only two differences between them. The first is that if Lucentis were free on the NHS, it would cost about £750 million a year, whereas Avastin has been on the market as a cancer treatment for years, and would only cost £4 million a year for eye patients across Britain.

Mr Lavin can give Avastin to his private patients, and he buys it in from Florida at a cost of only $30 a dose. But he cannot give it to NHS patients, because the second difference is that Lucentis is licensed for eye use in this country, but Avastin is not. And why not?

Well, look at the money. Genentech has spent huge sums developing Lucentis; the stock market requires that the company earns back the cost of the research and development.

So there is no way on earth the Pharma boys are going to seek a licence for Avastin, when they would be effectively cutting their own throats.

What does Genentech want?

It wants the NHS to throw in the towel and buy Lucentis, and in a terrible way it wants the press to be full of stories about poor old men who face blindness.

And yet what no one seems to understand is that it is entirely open to the NHS to call the bluff of the pharmaceutical giant. There are plenty of unlicensed drugs already being used, or rather, licensed drugs being used for other purposes. Patricia Hewitt could get a grip and tell the PCTs to use Avastin, even though it is not licensed.

But Hewitt dithers and passes the buck. She blames Nice, or the drugs companies, when it is up to her to step in. But she won’t, because of the incompetence of the Government in dealing with the money-making necessities of the pharmaceutical companies, and because of her own blindness to what is going on in the NHS.

30 thoughts on “People who lose their sight – macular degeneration”

  1. Cuba has a rather good healthcare system, forged out of neccessity. Since the Cubans economy is rubbish, for a variety of reasons, they have realised they can’t afford to shovel money in wildly, and focus on making people well. Sure, it’s rough & ready (I was treated free of charge in a Cuban clinic with spotless 45 year old equipment, and didn’t contract MRSA despite having several hole in my anatomy germs could probably have wriggled in through had they been inclined) and it led me to think the following:

    A health service needs clear objectives, and leadership which doesn’t bend with every passing faddish breeze. If their objective was, for example, to treat the sick & wounded, and improve the health of the nation, their priorities would naturally cascade from there, and the NHS would look a lot different. Maybe it’s time the NHS became independent, and ceased to be a political football.

    Likewise, schools and police forces need to take a careful look at what it is society pays for them to be, and what we certainly don’t.

  2. Firstly, although you say you “applaud the proceeds of capitalism”, in many ways this IS the proceeds of capitalism: the screwing over of an old man for an increase in profit.

    Secondly, Patricia Hewitt is not a doctor, and one can imagine the press coverage were she to allow the NHS to sell drugs unlicenced for their purpose. “Got cancer? Have a spoonful of cough medicine on the NHS!” But I agree that we could find a way to licence drugs differently. You are in a better position than I to get that done.

  3. It’s a very sad state of affiars when a man who fought for this country is getting nothing in return, He is having everything stripped from him in one go his life, his wife, his money, when is this going to stop and when are the goverment going to stop talking and actually do something about it!
    It’s times like this i wish i were dare i say it French or German.

  4. Imagine the terror of going blind.

    I don’t have to imagine.

    Almost exactly a year ago, at the end of a tough week when I’d come down with ‘flu, I woke up to find that I’d suddenly acquired a blind spot in my left eye, just next the centre of vision. Disturbed, I began searching online for a possible diagnosis, and was alarmed to find that the worst case might be that of Wet Macular Degeneration. It seemed that I could lose my entire central field of vision in days, weeks, or months.

    Monday morning, I phoned my GP, and was advised to visit my optician. This didn’t seem like the right advice, so I phoned my nearest hospital’s casualty. Come on in this evening, they said. So I did, and was subjected to a battery of tests, lights shone in my eye, etc, at the end of which the ophthalmologist declared that he couldn’t see anything wrong with my eye. But whatever it was, it wasn’t Wet Macular Degeneration. Phew!!!! He suggested that maybe I’d been looking at the sun, and burnt out a bit of my retina. I hadn’t.

    Sitting in a pub afterwards, waiting for the anaesthetic in my eye to wear off, I considered the various tests that had been carried out, and wondered, as a computer programmer, if I could produce a better test. I spent the next few weeks producing a better, more detailed test, and soon had something that could display my blind spot on screen, and even measure its area.

    So when I went back to casualty a month later, to undergo another round of tests which also failed to discover my blind spot, I pulled out my laptop and showed the ophthalmologist my blind spot on a computer screen. He was astonished. Never seen anything like it.

    I now have a simple computer diagnostic aid that is, in my view, better than anything they’ve got in any casualty department in the country. But can I interest the NHS in it? No. I can’t. Patients are not supposed to come up with this sort of thing on their own initiative.

    Fortunately, my blind spot seems to be slowly dwindling away. I know this because of my diagnostic aid. My terror of going blind has faded away, but I feel sorry for anyone else who develops a small blind spot like mine: ophthalmologists probably won’t even be able to find it. But I could.

  5. Very roughly, Melissa, by displaying lots of dots randomly on a screen, one after another, and recording the ones you don’t see. Display all the dots you didn’t see, and – bingo! – your blind spot appears on screen. And, actually, every eye has a natural blind spot where the optic nerve enters the eye.

    This is essentially the same way that field of vision tests (e.g. Humphreys) have worked for the past 30 years. But they’re usually as big as telephone boxes, and they’re probably ten times more expensive than telephone boxes, and they’re about as stupid as telephone boxes as well. But to give them their due, they can test a 180 degree hemispherical field of vision, while my test really only works for the central field of vision, roughly the macula.

  6. idlex
    I now have a simple computer diagnostic aid that is, in my view, better than anything they’ve got in any casualty department in the country. But can I interest the NHS in it?

    Of course you can’t as it works, it’s cheap and efficient, and of course the greedy robbing B@#*%:?~@ can’t make a load of money out of it.

  7. Boris you seem to making the case that the drug companies should determine health policy alone. Even the likes of private sector health providers like BUPA restict what treatment and the methods it will pay for.

    In any system there is some form of rationing, after all despite the extra income you earn as a journalist, you still ration your income out on what you spend. If you became health minister, you would be faced by the same hard decision that Hewitt faces today. You would have to resist the intense lobbying by the drug interests.

  8. Sorry to subvert this serious thread, but why is there no publicity here for Boris’s TV appearance on Saturday? I take it that it has already been recorded. Melissa, was it a raging success? It is very wise of him to appear being interviewed by a serious and sober political commentator rather than try to cross swords with someone with a sharp and wicked tongue.

  9. < ‘But can I interest the NHS in it?’ (idlex)<

    Have you tried donating money to the Labour party?

  10. idlex,
    I am sure I have used things like that before both at an opticians and in the uni. labs. It was basicly a screen and dots appeared and i had to press a button when i saw one.

  11. I am sure I have used things like that before

    You may well have, k. It wouldn’t be too difficult to partly emulate a Humphreys field test on a computer screen. They’ve been around for for several decades.

    But when I wrote to Bristol Eye Hospital about my test, they replied they were “most interested”, and might consider it in the context of future research projects. I gained the impression they hadn’t seen anything like quite like it before.

  12. Idlex – excellent

    Vicus – yes at 10.30pm on Saturday: it will be Boris at his best, with or without Dame Edna

  13. I might add, k, that I currently regard myself as being own best ophthalmologist. All the ophthalmologists I’ve seen have never even been able to locate my blind spot, never mind explain it.

    I’ve begun to think that the problem with ophthalmologists is that they are on the outside looking in, while I am on the inside looking out – and they are quite simply looking at things the wrong way round.

    The same, of course, applies to the entire medical profession, and may go some way towards explaining their incompetence.

  14. idlex – a doctor once explained to me that their motivation is to make patients go away, not to cure them. If they come back three or four times with the same complaint they are usually forced to do something about it – they refer them to the hospital.

  15. Maybe Harold Shipman was also simply trying to make patients ‘go away’, when he hit upon the perfect, permanent deterrent.

  16. I expect it’s me being thick as usual, but why doesn’t Boris’s constituent have injections of the cheapo drug if it’s just as effective?

  17. John: ‘But I agree that we could find a way to licence drugs differently’.

    As well as machinery that works out for MPs to expedite response and action reflecting the voice of local.

    As for my sufferings a simple immediate endorsement of my statement, by my local MP to the British Consulate in istanbul, can end my misfortune in foreign lands.

  18. …a doctor once explained to me that their motivation is to make patients go away, not to cure them. Jaq

    Some years ago my mother, who suffered depression, also developed pains in her back and neck. She was, admittedly, a bit of a nuisance with her GP but I never expected the call asking me to attend a meeting at her house.

    The GP announced that Mum was to be removed from the practice register for being excessively demanding and taking too much of the doctors’ time.

    Two months later she died, riddled with cancer. Her increasing pain was clearly an immediate symptom of the illness.

    The letter I sent that GP was probably the nastiest thing I have written in my life. What was the point of taking it any further? She was dead and out of her misery.

    I never got a formal reply but did, by coincidence, bump into him at a drinks party some weeks later. The shock on his face told me the events weighed heavily on him.

    All he could manage was, “Paul, what can I say…?”

    I told him “Nothing. Just learn from it.”

    Jaq, there are good doctors and bad doctors. We shouldn’t cast them all in the same mould. Our current GP and his associates are superb – it’s impossible to fault them.

    Mother’s GP has probably gone the same way as her by now. Can’t say I’m sorry.

  19. PaulD – but that’s just it – that’s my point: doctors are people, not angels from above. They are subject to deciding treatment on personality (and social status) or some are not, you don’t know. I just think we should remember they are people, and there’s good and bad in every group.

    I’m so sorry to hear about your mother, that must have been very difficult. My heart goes out to you.

    I also think diagnosos and treatment can be fashionable: in the 1970’s women tended to ‘suffer from their nerves’ for which valium was prescribed. My fathers friends wife was diagnosed as such after complaining of headaches. She dropped down dead a fortnight later with a brain tumour. It could be argued that nothing could have been done with these cases. But when I think of my healthy, beautiful friend, who was ignored by her GP after surgery and died 3 days later from septicaemia, I want to hit the GP very hard. I want to shout at him every morning. I want to staple a picture of my friend to his bedhead, to his bathroom mirror. Because men like him will be sympathised with, will be supported, will explain it away, will probably forget.

    She was just 19. The GP wasn’t blamed as the family were just too traumatised. It broke the marriage and they had another child. I know it happens but you just don’t expect to bury your children. It could have been prevented.

  20. Boris: extraordinarily good chap. Should be PM one day. UK desperately needs men of Boris’s calibre in the House of Commons. Wish Boris was our MP here in the Lewes constituency present incumbent Norman Baker – first class nutter who believes Dr D Kell murdered by Iraqis!! Is writing a book about it! May God preserve us and deliver Boris unto us! Our saviour. Lucky Henley on Thames.

  21. The sooner the British health system stops treating symptoms with little regard to the cause – the better.

    Fortunately, it is only the intelligent who see our drugs-dependent, profit-motivated system for the Blackadder-like joke it can be. At its worst, which unfortunately it is far too often, it is truly frightening. At its best the NHS is superb, the best in the world for treating serious injury.

    Such unreliable state monopolies only serve to sharpen the wits of those who can see things clearly – we have much to learn from others.

    GPs are generally interested in not seeing patients return, hence the National Sickness Service, only saved by spending boatloads when once sinple problems are allowed (even encouraged) to develop into serious trauma.

  22. Nice one Boris. My Mother’s just had her second Lucentis injection today – her sight has actually improved, she read 20 more letters on the chart than she did last month. And, amazingly, there is some sight returning to her left eye – she lost vision in that one 4 years ago due to dry AMD. I was ready for the battle re payment for the treatment – I would have taken this one to court but luckily they ok’d the treatment on the NHS. While we were waiting for that I had written to several private hospitals, getting prices for her treatment if we had to pay (Which would have involved selling her property and finding her a council house – thus buying her eight years of sight before the money ran out). The Yorkshire Eye Hospital’s prices are as follows:

    Each Lucentis injection is £1775
    Lucentis injections are normally given at monthly intervals for 3 months (not so, the Lucentis label states 24 months)

    Each Avastin injection is £700
    Avastin injections are normally given at six weekly intervals for 18 weeks (If this isn’t a trial I don’t know what is – its proved to be just as effective as Lucentis).

    They’re using Avastin and are really raking in a profit from it considering it costs about £1.50 a vile or thereabouts and administering it takes about 2 hours in total – if the hospital get their act together. What an earner that one is!

    No wonder the NHS is in such a state, its pathetic really.

    The dosage my Mother will be given is 1 per month for 4 months (some say 3) and then 1 every 3 months for an unspecified time.

    My only worry is, with her sight improving so well, that when they reduce the dose the improved vision will deteriorate to baseline – as is the outcome of Genentechs trials when dosage is reduced to one per three months. What I’m expecting to happen is that the NHS will tell us then that my Mother “Isn’t responding” to it and will stop further treatment – I know that Genentech recommend dosage of 1 per month – the trial ran for 24 months. It’ll be devastating for her to lose her sight again. With Avastin, of course, she could be treated forever more and it needn’t be a worry. But some fat cat pharmaceutical company would lose out so I suppose my Mother and thousands like her will just have to go blind. Our Government is spineless so wont intervene, not even for those that voted them in (I didn’t).

    If you want to read the Lucentis label you can get it here http://www.fda.gov/cder/foi/label/2006/125156lbl.pdf

    The whole situation makes me sick. I’m pleased that my Mother is getting the treatment but I’m worried that the recommendations for administration wont be followed for cost cutting reasons – thereby causing her to lose any sight that she’s regained. And all of this could be avoided by administering the cheaper version, Avastin, the same drug that Lucentis is derived from.

  23. When I see the number of people being denied treatment and dying in filthy hospitals I have to ask myself why these political incompetents such as Hewitt are not subject to manslaughter proceedings.

    If these overpaid, arrogant and incompetent fools want to take responsibility for the welfare of our people, then they should learn to accept responsibility for their incompetence.

    But then again, what can anyone expect from the likes of New Labour, a mishmash of Marxists, commies and their fellow travellers, union dinasaurs, civil rights lawyers and ex-council politicos.

  24. I just wanna say thankyou to the medical science people and their magic injections.

    Hopefully one day we’ll have a proper government that make them possible.

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