Measles, MMR and the Wrong Denominator

It is ten years since Andrew Wakefield had his now-discredited paper on the MMR jab, published in the Lancet. This paper sparked off a scare that the vaccine caused autism in children and many parents opted out of the jab, going for single vaccines instead, or not having their children vaccinated at all. The scare reached its peak in 2002 and it was two more years before it was thoroughly debunked by Brian Deer, a Sunday Times reporter. But the damage had been done and now unfortunate parents and their children are rediscovering that measles cause corneal scarring,deafness, croup and encephalitis(inflammation of the brain).It is one nasty disease and Andrew Wakefield bears a heavy responsibility for the new outbreaks of measles that have been recently reported.

However, there may be another element to this rise in measles, and that is the way in which data collection for communicable diseases changed in 2002. Before 2002, COVER statistics (Cover of Vaccination Evaluated Rapidly)were collected from computerised child health systems, which record what a child has been vaccinated against. These figures were then compared to the size of the health authority or trust population. This told the health authority how many children had been vaccinated, and vitally, how many had been missed or had gone unregistered. In 2002, when primary care trusts were introduced, the same method of collection was used, but the denominator changed from the size of the trust population, to the size of the population registered with a GP practice and residence for unregistered patients. This resulted in a near 100% vaccination record for measles and other diseases. However, when a researcher called Julia Granerod compared the vaccination statistics with population figures from the Office of National Statistics, she found that there was a discrepancy. She estimated that for 1998 - 2001, 10-20 000 children per annum had gone unregistered; in 2002, between 20 -40 000 children had gone unregistered and in 2003, the figures had dropped back to 2- 8000 children unregistered. This is vital information that is missing from the main statistics, and at a time when outbreaks of measles are happening, it is very worrying. Particularly worrying is the 2002 statistic. In the Granerod paper it was assumed that this blip was due to the re organisation of the trust areas, and a delay in registering people with the appropriate trust. But 2002 was the year that the MMR scare was at its height; it may be that these children were actually not vaccinated as opposed to being simply unregistered. These figures need analysed as a matter of urgency, and the Department of Health needs to re-consider how it is measuring vaccination uptake. Otherwise it could find itself in the middle of a major outbreak without the essential data to counter it.

Suffer Little Children

It has been a pretty grim week in the news as far as children are concerned. Firstly, the case of baby P is about as shocking as it gets, even for hard boiled reporters and social workers. The scenes in Parliament this afternoon at Question Time have been denounced as disrespectful to the dead child, but really the politicians could be forgiven for this; it was quite obvious that they, like us, are in shock.
The second case this week was that of Shannon Matthews, who was kidnapped, drugged and tethered to a roof beam, so that her mother could claim money from the Madeleine McCann fund to find her. She was kept at her uncle's house for three weeks,until the police tracked her down.
The third case this week,(please bear with me, because it will become clear why I'm including this), is the case of Hannah Jones who has refused heart transplant treatment, so that she can spend her remaining days at home. The local Primary Care Trust were going to raise a High Court action to force the operation, but they dropped it.

What has struck me about all these cases, is the immediate pinning of blame onto professionals and the reluctance of the media to consider the role of the parents in these cases.

In the case of baby P, the blame has been put squarely on social workers and doctors. Now, something has gone seriously wrong here and it needs to be sorted, but let's be clear about this; it was baby P's parents who killed her. No one else. We are having a discussion about the failings of the system; we are not discussing the fact that her parents killed her. Compare that with the Vicky Hamilton case, where Peter Tobin, who is a stranger, has had the blame of Vicky's murder laid squarely at his door (and rightly so.)

Next is the case of Shannon Matthews. When this case first occured and the police did what they always do; that is they checked family, relatives and friends for clues as to what had happened, they were denounced in the press for this. They were told that they should be looking further afield, that the case was not getting the publicity that the McCanns got and in some sections of the press, it was alleged that there was snobbery involved; because Shannon Matthews' parents were working class, they were not taking it so seriously. When Shannon Matthews was found, all the critisism disappeared like snow off a dyke.

The third case, which is different, is that of Hannah Jones. Now, I think the decision that this girl has taken is reasonable. The operation she would have had, would have perhaps prolonged her life, but that was the best outcome. There was a risk that the leukaemia that she had had, would come back, and she would have been on heavy medication to prevent transplant rejection. She also would have been in and out of hospital at a time when she wanted to be with family. But I do not agree with the pasting that the Trust has taken over this. This girl is twelve years old. She is very sick and looking after someone sick is very wearing. It is entirely possible, (although I don't think it has happened here) that her parents might have encouraged her in this decision, because they are worn out caring for her. It happens, as I said in this post. But the media have panned the trust for being 'interfering.' As if that isn't bad enough, some are using this as an argument for assisted suicide, whereas this is a very clear cut case of refusal of futile medical treatment.

The common thread running through all of this, is our reluctance to accept a very grim fact of life; parents hurt their children. We have not learned to accept and deal with this as a society, and so whenever a case of child abuse comes up, it's always someone else who is responsible. So we profoundly resent 'interfering' when the health care trust goes through all the proper checks as to the actual wishes of the child and her set up at home, but we bay for blood and sackings when a case of child abuse is missed as in the case of baby P. We are perfectly comfortable with a stranger like Peter Tobin being caught and convicted; we accuse the police of harassment, when they go through the proper procedure of search for someone like Shannon Matthews. We are reverting to the primal instinct of blaming the stranger.

Parents hurting their children is the ultimate nightmare. Who do you trust, if you cannot trust your parents? But we cannot turn away from it. We can't pretend that it doesn't exist. And it is not right that professionals doing their job, should become a media punchbag because we are unable to face this very ugly reality.Let us be grateful instead that they deal with child abuse day in, day out, so that we don't have to.

Your Good Health- Obama's Proposals for the American Health Service

Adulation today, a nightmare of an inbox tomorrow. Barack Obama doesn't have his troubles to seek, what with a global financial crisis and Iraq and Afghanistan to deal with. Yet there is one issue that may prove to be an even bigger challenge than these; and that is his proposals for American health care.

American health care, quite frankly, is a disgrace. America has the biggest GDP in the world, yet it is 41st in life expectancy, behind nearly all its Western European neighbours (Portugal is 42nd). Americans spend 15% of their GDP on healthcare and yet there are 67 million Americans uninsured. Drugs are prohibitively expensive, as I commented on in this post. Although there is a loose federal structure to healthcare in America, and Medicaid,(the state medical system)caters for the poorest, standards and access vary wildly.

Well, it won't be for much longer, if Obama gets his way. Here are his main proposals;

1.) Mandatory health insurance for children.
2.) Mandatory health insurance to be offered by employers to their workers. Small businesses will be exempt.
3. A set of national standards for medical insurance companies. At the moment, states have minimum requirements, but this varies a lot.
4.)Insurance companies will not be allowed to turn away people who are sick or old.
5.) The set up of a National Insurance Exchange, which will allow people on low incomes or who work for a small business, to purchase an individual plan, complete with tax credits to help them purchase the plan.

Now this looks like la-la land at first glance, doesn't it? Especially when the federal cost of this has been estimated at $1300 billion over the next ten years. But let's look at it another way.

America's GDP is $12,417 billion. 15% of that goes on health, which is $1,861 billion. But only half of that money is paid out by the government; the other half is what individual Americans pay. So the Treasury are in fact paying out $921 billion, or 7.5% of GDP, equivalent to the lowest percentage contributions in Europe. Barack Obama's plan is estimated to cost an extra $1300 billion over ten years, or $130 billion per year. So add that on and that takes you to $1061 billion per annum or just over 9% of the GDP. For that investment, the government will be able to add an extra 34 million Americans to the insurance books.

Next question; how are the insurance companies going to take all this? I think in the present climate, that they will actually take it quite well. Standardisation of rules will not go down well; neither will the insistance that they have to take on the old and chronically ill, thus increasing the risk. But in return, what they are going to get is far more customers and a captive market, at a time when many Americans will be opting out of medical insurance. The risk pool will be spread by the use of a National Exchange, which means that they can take on less profitable customers without too much loss.

How will Americans take it? In the land of the free market, spongeing off the state is seen as un-American. But the folk who would normally take this attitude, are struggling themselves just now, and will fall into the category of lower income earners who are eligible for tax credits. The ideal of pooling resources in a difficult time to create a public health service, will seem very attractive just now.

One group who will really like standardisation, will be public health officials. Standardisation at central government level will mean health data collection at central level. At present, this doesn't happen in America; there is no overall governmental body responsible for data collection and it makes it very difficult to plan for disease management. Do you remember how Annabel Goldie kept asking the government to establish a national methadone register? This was so that it was known how many people were on methadone, how many people had a drug problem, and therefore how important it was to set up drug rehab centres, instead of handing out methadone like sweeties. That is how important data collection is.

There are two groups that will not like these plans; employers and pharmaceutical companies. Many big employers do contribute to health plans for their employees at present, but Obama is planning to classify the employers' contributions as taxable income. This is a flaw in his plan, and it will arouse resentment. I think he should leave the contributions tax free, and take a lesson from what happened to pension plans in Britain when Gordon Brown decided to tax them at source and on maturity.

Pharmaceutical companies are really, really, really going to hate these proposals. Standardisation of insurance companies and the cost of premiums means more government involvement. More government involvement means more accountability for prices charged. More accountability for prices charged, means lower prices for drugs, and no more carte blanche. They are the group most likely to try and put a spoke in the wheel of these proposals; when Hilary Clinton tried to introduce health care reforms in 1993, they fiercely opposed her and succeeded in sinking them.

These reforms are a gamble. They are audacious, to coin Obama's phrase. But I think that if the insurance companies and pharmaceutical companies end up in opposing corners, instead of banding together, then he could get it through. And if he does, he could do more to combat inequality in America than all the civil rights movements before him. I wish him the best of luck and the American people the very best of health.

Brave New World

In the early nineties, genetically modified crops swam into the public ken. These were crops which were more resistant to disease and had a higher yield than normal crops and at first it seemed like they were ‘a good thing.’ However, as the details of the complicated technology were discussed, doubts arose. These were;

1. The DNA modification of crops, which was equivalent to several generations of the normal breeding process and the possible consequences;

2. The ‘genie in the bottle’; GM crops would cross-pollinate with non-gm crops, so if something went wrong with the gm crop, there would be no way of containing it or going back;

3. Companies claiming intellectual property rights over crops that they had developed and charging for them;

4. Companies developing crops that did not produce seed fit for sowing, so that customers esp in the third world, would have to go back to them to buy more seed;

5. People being unable to choose whether or not they could eat gm food or not.

The media did a blinder on what was a very complex subject, broke it down into simple layman’s terms and forced the issue with governments. The result was that we proceeded a lot more cautiously and hemmed in these companies on selling non-seeding crops to the third world.

How I wish, how I really wish that in the embryology debate that finished on Wednesday night in the Lords, that the media had done the same thing.

I did a post on this subject some months back, but to re-cap, stem cell research holds the ‘golden key’ to curing disease. Stem cells are the cells in the body that repair and replace diseased tissue. A number of these cells (called ‘pluripotent’ cells) can adapt to any area of the body and regrow for example, heart muscle damaged in a heart attack. It is the most promising area for finding cures to such horrors as Parkinsons’, Alzheimers and MS. There are a number of sources for these stem cells, but the two basic groups are embryonic stem cells, which come from foetuses, and adult stem cells, which are present in all of us and can be harvested and grown, (usually from bone marrow). Scientists have been using left-over eggs from IVF clinics for their research, but there are not enough eggs for their research, so the point of this bill is to allow them to create 'hybrid' embryos, using eggs from animals (cows,rabbits and pigs) and human cells. Here are the big issues surrounding the technology.


1.The effiacy (or lack of it) of embryonic technology

All the cures that have come from stem cell research, have come from the adult stem cells, not from embryonic ones. It is looking increasingly likely that things will stay this way. There are three major problems with embryonic stem cells;
1. They are not a perfect match to the patient so the patients body rejects them
2. They are cloned and have genetic defects in them from the cloning process;
3 Embryonic stem cells are not biologically compatible with adult tissue; they produce tumours when they are injected.


2. Intellectual property rights

The big brother of embryonic stem cell research, adult stem cell research, is the area that has actually produced all the wonder cures. Embryonic research has produced none. But the reason that companies want to persist with it , is that with embryonic technology, they can claim patent rights on a medicine developed from it. With adult stem cell cures they cannot, because the stem cells are taken from the patient and therefore belong to the patient.

3. ‘Therapeutic’ cloning

'Therapeutic' is used here, because the stated aim of the research is to grow stem cell lines that can be used to treat people for various diseases, not to actually clone a human being. But it is exactly the same technology and it means that we are building up a bank of experience which could very easily be switched to this use.

4. Crossing the species barrier
In this cloning process, the egg that is being used is from an animal, usually cows, rabbits or pigs, and the cells inserted into the egg are human. This bill allows the creation of cybrids, which is 99% human, to hybrids, which are 50% human. This crossing of the species barrier raises questions about the crossing over of animal diseases to humans, if medicines developed from these stem cell lines are created. At the moment, people who receive neural transplants from medicines developed from pigs have a whole set of restrictions on them; they are past child bearing age, are not allowed to give blood and have to use a condom when they are having sex. Not a whisper of this reached this debate on hybrid embryos.

5.Possible malicious use of embryonic technology

The possibility of full blown cloning and bringing a human embryo to full term, was the spectre that hung over this debate. This was supposedly dealt with in the bill, which forbids the implantation ‘in utero’; into a living being. But there was a flaw in this. The bill did not forbid the implantation of an embryo into an artificial womb. It couldn’t, because the stem cells are obtained by growing them in a laboratory. Scientists in America are developing artificial wombs that are in a different league from a petri dish, and again, this was not mentioned in the debate. And nobody picked up on the fact that doing away with the child’s need for a father, could apply to cloning.

Some might think this wouldn’t happen, but when you have a falling population and a dwindling economy to match like Britain has, or you are short of women as China is, there is certainly a possibility that someone might suggest this as a solution.

So there it is. The debate that never happened, or not in public anyway. Pandora’s Box was opened on Wednesday night, and none of us knew; we were too busy wondering if two clowns on Radio 2 were going to be sacked for making obscene phone calls. I predict that this bill in future will be seen the turning point of the 21st century and we didn't even debate it properly. Now all we can do, is deal with the consequences.

World Poverty and How to Solve It

Rachel Carson, an American marine biologist, published a book called 'The Silent Spring'.It had been prompted by the devastation of her friend's bird reserve, by DDT pesticide spraying going on nearby. In the book she outlined the consequences of indiscriminate pesticide use and how it could affect the whole environment through the food chain. That book prompted the start of the environmental movement and the founding of the Environmental Protection Agency.

Peter Benenson,a lawyer, was on the tube in London. He opened a newspaper to read an article about two Portugese students who had been sentenced to seven years in jail for drinking a toast to liberty. He and his friend Eric Baker, got together, sent off an article called 'The Forgotten Prisoners' to the Observer. That article was reprinted in several international papers and became the mission statement of the organisation that they went on to found, Amnesty International.

During the Bosnian war, two brothers, Fergus and Magnus MacFarlane-Barrow, drove a truck full of provisions to Medjugore in Bosnia, a place that they had visited some years previously on a religious pilgrimage. From that, they started to deliver aid to Africa and on one trip, they spoke to a girl whose mother was dying of Aids. When they asked her what she wanted, she said that all she wanted was food to eat and to be able to go to school to get an education. From that came Mary's Meals, a charity that encourages children to go to school by providing meals at the school. This breaks the poverty trap in several ways; it means those parents who are ill, do not need to worry about them getting fed; it means the children get a valuable education which will enable them to get a job; and it means the children do not have to go into prostitution to earn money for their families and run the risk of catching Aids themselves.

Richard Reynolds, who lives in a tower block in London, grew depressed with his surroundings and started planting sunflowers just outside the block. More people joined him and they launched an assault on derelict land, concrete roundabouts, overgrown planters and general ugliness everywhere. It has grown into Guerrilla Gardening, a movement that tackles urban neglect with flowers and forks.

Ok, what's this to do with world poverty, (the subject of World Blogging Day) and how is it going to solve it, apart from the more obvious example of Mary's Meals? And what has a guerrilla gardener got to do with a marine biologist?

First up, these people all understand what poverty actually is. It's not just absence of money. It's absence of education, absence of justice,absence of freedom and absence of beauty. Poverty comes in many forms.

Secondly,they knew that they could not do it on their own. Rachel Carson got info from fellow scientists unofficially and they reviewed her book very carefully so that the corporate lawyers wouldn't jump on her head;Peter Benenson relied on his contacts in the media and his friend Eric Baker, to launch Amnesty; Magnus and Fergus MacFarlane-Barrow relied on their friends at Dalmally Lodge to support them in their work; Richard Reynolds gathered friends and volunteers round him for the guerrilla gardening. Conquering poverty is something we have to do together for it to work.

Thirdly, they were all content to do one thing that played to their own resources. So Rachel Carson wrote an academic book on the environment;Peter Benenson the lawyer, studied cases of prisoners of conscience and publicised them; Magnus and Fergus MacFarlane-Barrow used their physical toughness as fish farmers to actually drive trucks to Africa; Richard Reynolds used his gardening instincts to create places of beauty. They didn't try to solve everything.

Fourthly, none of them minded that people thought them a bit crazy. George Bernard Shaw once said; '
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.'
All of them understood that progress means being avant-garde.

Finally, all of them understood the poverty of their own society. That does not lie in lack of resources, or skill, or money, although they all play their part. The poverty that underlies them all, is poverty of vision. We look at what we can't do, rather than what we can. We look to others to do what we could do ourselves. We belittle ourselves and the resources that we have; our material wealth, our time, our gifts, our friends. When it takes a fiver to feed someone for a year in Africa, why is anyone starving there? How many lawyers and biologists graduated the same year that Rachel Carson and Peter Benenson did? How many people could wield a gardening fork like Richard Reynolds? How long does it take to mow a piece of overgrown grass? But these people took responsibility. They didn't wait to be asked or chosen. They chose themselves and got on with it.

Go on. Do something. You don't need to save the whole world. You don't need to do something you can't. Just do something that you can. And who knows where it will take you...


Note:The lovely picture at the top is from Richard Reynolds' Guerrilla Gardening; these sunflowers are actually growing in front of the Parliament, (although at a distance). Wonderful.

Computer Says No.. Connecting for Health Isn't - Well, Connecting

The cyber disaster that is the National Programme for IT continues; Times Online reports on the Royal Free Hampstead NHS Trust, who switched on their 'Millenium Care Records Service' some months ago and had to amend 12 000 patient records in the space of three weeks. Software crashes were a regular occurence and the trust had to bring in extra staff to cope with the disruption. The trust naturally wants compensation; they have had to spend a lot of money to compensate for the faults in the programme. And this is where the fun starts. The local service provider for their area is Cerner, who actually devised the system. However, the trust cannot sue them. That is because the actual contract is between BT and the Secretary of State for Health. If the trust wants compensation, it will have to appeal to the Health Minister. Will they get their money back? I wouldn't bet on it.

Accountability, or lack of it, has been a recurring theme in this saga. In April 2006,an open letter was sent to the Health Committee by leading IT experts, asking about the feasibility of the programme and complaining that there was a lack of information and transparency regarding the project.

The costs have gone up and up. Connecting for Health was originally pitched at £2.3 billion, went up to £12.4 billion, and estimates are now £20-30 billion. An unofficial estimate, said to be in a minute to the Treasury, puts the possible final cost at £50 billion.

Perhaps the most infamous episode in this escapade, was when Accenture, one of the companies involved in the implementation, withdrew its services in September 2006. It should have been fined £1 billion for breach of contract. It was actually fined £63 million by Richard Granger, the Director General of the programme. In a previous life, Richard Granger worked for Andersen Consulting. That company later re-named itself Accenture. You join the dots.

Now, I know what you're going to say. It's a big project, they always overrun, it's the NHS, it'll be alright in a few years, once they've sorted out the software. But it's not alright. We're talking about not millions,but billions of pounds. We're talking about a bail out on the kind of pegging level of the credit crunch. And at the end of it, we don't have a system that works. We cannot afford this as a country. The health minister Alan Johnston needs to get his seriously tackety boots on and tackle this. If that means taking BT to court, then so be it. 'Computer says no,' just isn't an option anymore..

Note: this post replaces an earlier post that I did on this subject that was somewhat rushed and lacking in accuracy as a result. After a nights sleep, some comment from Sean Brennan and a nice cup of tea, this resulted. Hope this is more to your taste, Sean.

Watch the Lady - the Art of Misdirecting a Controversy

A few months ago, Mike Gray, a bowel cancer patient, gave the Scottish Parliament one of its more uncomfortable moments, as he asked for the right to be given Cetuximab, a new cancer drug, on the NHS. He had already spent £26 000 buying his treatment privately, and had been penalised for this by the NHS, who do not allow private and public treatment to run together. Yesterday, Nicola Sturgeon announced that there would be a review of whether co-payments would be allowed. This has ignited the debate about whether this would result in the thin-edge-of-the-wedge means tested payments for treatment; others chose to castigate NICE (The National Institute of Clinical Excellence) for not allowing Cetuximab to be on prescription. But the one question that hasn't been asked is; why are this new class of cancer drugs so expensive in the first place?

That's the question that Slate, the American online magazine asked in this artice. And it was a real eye opener. Here in Britain, the cost of Cetuximab,Zevalin and Avastin are £35 000,£12 000 and £20 000 per annum. But for the US, the costs are $16 000, $17 000 and $24 000 per month! You do the math, but it's pretty obvious that these drug companies are thinking of a number and then multiplying it by how much they think they can get away with.

I never thought I would agree with NICE on anything, especially when they restricted the prescription of dementia medicines, but I am with them on this. The drugs companies are the real villains here, but the media have completely missed the target and are blaming NICE instead. It's a vile thing to hold sick people to ransom and that is what the pharmaceutical giants are doing. I can understand a high charge for a medicine like Zevalin, which is used for non-Hodgkins, a relatively rare secondary cancer of the lymph glands. But Avastin and Cetuximab are both for colorectal cancer, a very common cancer. How can they justify these prices?

As far as co-payments go, the jury is out. I have mixed feelings about where such legislation should go. But I think the media should turn a very large spotlight on the pharmaceutical companies and ask them why they are charging the prices they are and what their profit margin is. This is the nub of a controversy which is becoming increasingly misdirected. Don't watch the lady. Watch the prestidigitation of the pharmaceuticals...