Talking Sense - Volume 44, Nos 2, Autumn 1999
It’s hard being a parent these days. Things we used to take for granted - such as taking our child along for routine vaccinations - have become a real headache. For some people this is what has happened with the Measles, Mumps and Rubella Vaccine ( MMR) which has been the subject of much media debate recently.
Anxious parents, frantically weighing up pros and cons, need soundly-based information. But it’s not always easy to come by. Talking Sense cannot cover the subject in full detail - though we can point you in the right direction - but we ‘ll cover some important issues - particularly in relation to rubella.
Francesca Wolf reports...
Never forget rubella
We at Sense are acutely aware of the effects of rubella (or German measles) on the unborn child. Over 40 years ago, a group of mothers who had all contracted rubella while pregnant came together, desperate for information and support. They had all given birth to children affected by congenital rubella syndrome (CRC) - many of whom had combined sight and hearing loss as well as various other difficulties.
As Sense grew, we learned of more and more children affected by rubella, and started to offer the specialist services and support they needed. We also campaigned for the introduction of rubella vaccination in 1970, and then for the combined MMR (measles, mumps and rubella) vaccination in 1988.
MMR: the background
The MMR vaccine was introduced in the UK in 1988 and since then the incidence of measles, mumps and rubella has decreased considerably. These diseases have now become relatively rare in this country. MMR has also been used in other countries for a long period with a good safety record.
In recent years, though, parents here have become worried by research from the Inflammatory Bowel Disease Study Group at the Royal Free Hospital which appears to link MMR with inflammatory bowel disorders, particularly Crohn’s disease, and autism
Not surprisingly, the media fell on the studies and sensationalist headlines rang alarm bells in many families. Scares such as BSE and thalidomide have reduced people’s trust in ‘professionals’, and vaccination has always been a prickly issue here - there is quite a strong anti-vaccination lobby in this country.
However, subsequent studies have failed to back up the findings. In March 1998, 37 independent experts were asked by the Medical Research Council to review all research into any association between measles, measles vaccine, MMR, autism and Crohn’s disease. They found no evidence that persistent measles virus infection causes Crohn’s disease nor any indications of a link between MMR vaccination and bowel disease or autism
In 1999, two further independent studies found no causal link between MMR vaccine and autism and Crohn’s disease. Nevertheless the scare continues to run.
Drop in uptake
Fears over safety of the MMR vaccine have led to a drop in uptake. Since doubts emerged, the proportion of 16 -month children who have received the jab dropped from over 82% in1997, to 75.6% in April 1999. MMR coverage for two year olds is higher - 87.6 % - but this is still lower than the previous quarter. (1)
If this downward trend continues, there will be a growing pool of unvaccinated children in the community and doctors fear this could lead to these virulent diseases returning. Measles can kill or cause serious side-effects - in the last year before MMR was introduced in Britain, 86,000 children caught measles and 16 died while worldwide 1-2 million children die yearly from the disease.(2) Rubella can cause severe defects in unborn children. Mumps can lead to viral meningitis and deafness.
The effects of decreased vaccine coverage were seen in the 1970s when loss of confidence in whooping cough vaccine led to three major epidemics of whooping cough. In Russia a well-established vaccine programme fell apart following the USSR’s dissolution since when a huge diphtheria epidemic has caused more than 125,000 cases and 4,000 deaths.(2)
Measles, mumps and rubella, though rare in the UK, remain common elsewhere. For example there is an ongoing rubella epidemic in Greece. Unimmunised children are still at risk, from infectious people coming into Britain or by travelling to countries where the diseases exist.
If your child is unimmunised you rely on others vaccinating their children to avoid infection.There will always be children left unprotected who can’t be vaccinated for medical reasons or, rarely, because the vaccine didn’t work. But if more people choose not to immunise there will be more and more susceptible children and the diseases will inevitably return here.(2)
Why not single vaccines?
Some commentators have suggested it would be safer to offer single vaccines for measles, mumps and rubella as an alternative to the triple MMR vaccine. They say this would relieve the burden on a baby’s immune system and that parents should be able to choose whether they have the three components separately or together.
However the Department of Health’s view is that as no evidence exists for MMR vaccine causing inflammatory bowel disease or autism no benefit would be gained by giving the vaccines separately. It could, they say, be harmful - leaving children and their contacts unprotected for longer to preventable infectious diseases. Jeremy Metters, Deputy Chief Medical Officer, says no country in the world that uses MMR vaccine also provides them individually.
Sense is also worried by the idea of single vaccines." There is always the possibility that not all parents would complete the programme and some would miss out rubella altogether", says Malcolm Matthews, Sense’s Director of Policy and National Services.
Sense’s position
So where does Sense stand on the wider issue? It was established in 1955 by two mothers of children with congenital rubella syndrome. We campaigned for the introduction of the MMR vaccine, believing it offered the best protection against the rubella virus and the serious damage it can cause if contracted by mothers early in pregnancy.
In the light of current medical knowledge, Sense continues to support the current MMR immunisation programme, while recognising that the decision to have a child immunised is an individual one made by parents. We do not offer medical advice. But in order for parents to make informed decisions they need sound information from reliable sources.Sense believes health care professionals should give parents detailed information about the effectiveness, side-effects and contraindications, to help identify those at risk of an adverse reaction. Parents also need to be properly informed about research findings.
For ourselves, we can educate the public and professionals about rubella and its effects.The media debate focuses primarily on measles, the measles component of MMR and its alleged link with bowel disease and autism.We are also concerned at how little is known about rubella today and see one of our duties as guarding against complacency.
The effects of rubella
Because there are now so few cases of rubella there is remarkably little general awareness of congenital rubella syndrome (CRS) - a group of symptoms experienced as a result of contracting rubella before birth. Many people are unaware of its existence and the devastation it can cause unborn babies and their families.
Rubella or German measles is a virus which is spread in the air as droplets by coughing or sneezing. The initial infection is often mild and easily misdiagnosed. So people who contract the virus may feel unwell and develop symptoms such as a sore throat, rash and low grade fever, but they may not even notice it.
A woman who catches rubella in early pregnancy can - often unknowingly - pass it on to her unborn baby. There is no effective treatment for rubella infection in pregnancy.The virus can cause the baby to be born deaf and blind and may also damage the child’s heart , brain and other organs. The baby is said to have congenital rubella syndrome (CRS).
No one fully understands how the virus affects the foetus though it seems to affect cells that are developing at the time of infection. The stage of pregnancy when rubella infection occurs is the most significant factor in determining what kind of harm occurs: in the first two months it may cause a number of impairments, but after 18 weeks the chances of the baby suffering damage are minimal,even if rubella infection is passed on.(If a baby is infected but appears to have no associated problems it is said to have CRI rather than CRS.)
Each affected baby experiences the effects differently and may only have hearing loss for example. Some appear unaffected but the virus will still circulate in their blood after birth and they need close following up during childhood. (About a third of children described as ‘CRI only’ are subsequently found to have a rubella-associated disability, usually hearing loss.) (5)
Damage to the eyes caused by CRS may cause cataracts or other abnormalities. Deafness is common.The heart can be damaged in various ways as can the brain -causing mild to severe difficulties.These may include lethargy, irritability, learning difficulties, small head, lack of coordination, seizures and behaviour problems.
Children severely affected by rubella need to cope with a range of disabilities . They all have the capacity to learn, communicate and achieve with the right kind of help, early intervention and educational support, but the challenges they face are enormous.
"Our lives have ground to a halt"
Muriel Mathers, whose 20-year old daughter Sarah has congenital rubella syndrome says "The damage this seemingly innocuous illness can cause is beyond belief. Our lives were turned upside down and will never be the same again."
Muriel wasn’t aware that she had contacted German measles while pregnant, so it was a terrible shock."When Sarah was born she wasn’t even expected to live," she says. "I must have contacted rubella early in pregnancy as all her organs are damaged.She is profoundly deaf, has a sight problem, a congenital heart problem and learning difficulties.
"Sarah also has behavioural problems - she is self abusive, aggressive and experiences a mishmash of emotions including anger and frustration.She was expelled from her special school because they couldn’t cope with her.Then we had a battle because at 19 she fell between two stools - social services and education. We’ve had to fight for everything she needs. "
Now at a Sense Day Centre, Sarah comes home each evening and, considering her difficulties, is doing quite well . But Muriel feels little optimism. "It’s like a continual bereavement - every step of the way there’s a sense of loss.She didn’t go to normal school, she’ll never get her GCSEs, never be married, she’ll always need to be looked after.
"Our lives have ground to a halt. Her father and I have no social life together because we can’t leave her with anyone - the physical and emotional demands never stop."
Muriel says she understands parents’ concerns because of media scares about MMR. "But if anyone wants to spend 24 hours in my home at the end of that time they’d have no doubt about having their child vaccinated. People do not understand the difference between a normal childhood illness and rubella; they just don’t grasp the damage it can cause," she says.
An informed choice
The decision to immunise is never simple and even a whisper of harm can cause widespread panic. Dr David Ellerman, consultant paediatrician at St George’s Hospital London, urges parents not to be taken in by misleading reporting: "Anyone can take a line or two our of a scientific paper and give it a totally different meaning," he says. "If you are really worried, go and look at the research yourself."
In the light of available evidence Dr Ellerman believes MMR is the best protection against three devastating diseases. "Can so many countries really be wrong in their immunisation policy? Can 20-odd years of experience have missed a significant issue like this? " he asks. And he points out that even most of the doctors involved in the recent autism study at the Royal Free continue to endorse current vaccination policy.
The Department of Health continues to recommend MMR as the safest option. Chief Medical Officer, Sir Kenneth Calman, writes in a letter to doctors ( 27.3.99) "Based on the material I have seen I have concluded there is no link between measles, measles vaccine or MMR immunisation, Crohn’s disease and ASD."
Sense urges parents to find out as much as possible before deciding. Malcolm Matthews, Director of Policy, says, " Sense strongly believes that parents should make an informed choice on whether to immunise their child, based on all the facts available."
References
(1) CDR Weekly: Communicable Disease Report . Vol 9; 26; 25.6.99
(2) MMR Immunisation Factsheet. Health Education Authority 1997.
(3) Pat Tookey, coordinator of the National Rubella Surveillance Programme
(4) Tookey, P and Peckham,C.Surveillance of congenital rubella in Great Britain , 1971- 96 . BMJ 1999; 318:769-770
(5) Tookey, P The Informed Parent. NCRSP, Institute of Child Health. June 1999.
(6) Thompson,N.,Wakefield A., et al Is measles vaccination a risk factor for inflammatory bowel disease? Lancet 1995;345;1071-4
(7) Taylor, B., Miller, E., et al Autism and measles, mumps and rubella vaccine: no epidemiological evidence for a causal association . Lancet. June 1999; 353: 2026-29
(8) Peltola et al.The elimination of indigenous measles, mumps and rubella from Finland by a 12-year two-dose vaccination programme N.Engl J Med 1994; 331; 1397-1402
Rubella vaccination policy
1970 Rubella vaccine first licensed in the UK and offered to 11-14 year-old schoolgirls.
1972 Vaccine offered to seronegative women post-partum and screened " high- risk" groups.
1974 Screening for adult women extended.
1988 MMR for all children introduced in second year of life.
1994 Mass MR immunisation of 5-16 year olds.
1996 End of school programme. MMR pre-school booster introduced.
Rubella vaccination has changed from a selective programme - protecting at-risk individuals by personal immunity - to a mass programme interrupting the transmission of the disease and conveying " herd immunity". However, to be effective this relies on a high enough uptake of immunisation and it also means there is no natural immunity within the community. (3)
Pat Tookey, co-ordinator of the National Congenital Rubella Surveillance Programme at the Institute of Child Health, points out the steep decline in congenital rubella births and terminations. Before rubella vaccine was introduced for schoolgirls in 1970, 200-300 babies were born yearly in England and Wales with congenital defects associated with rubella. (4) From 1971-75 there were 241 l rubella births reported (3709 associated terminations). Between 1991 and 1995 there were 20 congenital rubella births reported (43 terminations). Most of the ‘91-‘95 cases were women acquiring the infection abroad or who had recently arrived in the UK.Women from ethnic minority groups appear to be more susceptible to rubella infection. (5)
However in early 1996 there was a rubella outbreak mainly affecting young men who’d missed out on MMR. In that year 12 babies were born with rubella defects, three times the recent average. Two thirds of these births were to UK-born women.
MMR – The key research findings
The recent controversy about the MMR vaccine started when Dr Wakefield and colleagues from the Royal Free Hospital released research that spoke of a ‘hypothetical association’ between the measles part of the MMR vaccine, and Inflammatory Bowel Disease (IBD) and autism.
IBD and autism are two conditions which appear to have increased in the UK in recent years. The rise in IBD led Dr Wakefield and his colleagues at the Royal Free Inflammatory Bowel Disease Study Group to question whether something other than bacteria breaks down the blood vessels in the gut wall, and they tested the hypothesis that measles virus is implicated.
However, Wakefield acknowledges the rise in cases started before vaccination:’Rates of inflammatory bowel disease have been increasing in the UK over the past 40 years, certainly before measles vaccination was introduced in 1968,’ he writes in his study published in theLancet in1995. (6)
Autism appears to have increased steadily between 1979 and 1992, although there was no sudden increase or change at, or after, the advent of MMR vaccination. Dr Wakefield and his colleagues do not claim their work shows a causal association between MMR and autism - although many media reports imply this - but they do consider a hypothetical association. (The theory is that MMR vaccine might damage the bowel, allowing certain chemicals - opiods - to gain access to the brain and affect development. No proof for this hypothesis has been given.)
A different theory that has been put forward is that the apparent rise in autism is due to increased awareness and reporting of symptoms and better diagnosis, using new criteria.
The research countdown
1993 Wakefield and colleagues publish research investigating links between measles infection and Crohn’s disease.
Wakefield, A. et al.Evidence of persistent measles virus infection in Crohn’s disease. J.Med.Virol 1993;39:345-53
1995 Wakefield and colleagues testing ‘the hypothesis that measles vaccination is a risk factor for the development of inflammatory bowel disease’ claim the disease was three times more common in those who’d been vaccinated against measles. But they state the study ‘does not show a causal relation.’ (Thompson, N., Wakefield, A.,et al Is measles vaccination a risk factor for inflammatory bowel disease? Lancet 1995; 345; 1071-4
1998 Wakefield and colleagues publish their research into possible links between autism, Crohn’s disease and MMR vaccination. In 8 of 12 children studied parents associated onset of behavioural symptoms with MMR vaccination and all 12 also had intestinal abnormalities. The researchers suggest ‘the consequences of an inflamed or dysfunctional intestine may play a part in behavioural changes in some children.’ However their report concludes ‘ We did not prove an association between measles, mumps and rubella vaccine and the syndrome described.’
* Wakefield, A. et al.Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. Lancet 1998; 351: 637-41
1998 Fourteen-year Finnish study finds no severe adverse events associated with MMR vaccine after three million doses have been given and ‘no data supporting the hypothesis that it would cause pervasive developmental disorder or inflammatory bowel disease.’
Peltola et al No evidence for measles, mumps and rubella vaccine-associated inflammatory bowel disease or autism in a 14-year prospective study ( research letter) Lancet 1998; 351: 1327-8
23.3.98 The Department of Health asks the Medical Research Council to convene a meeting of experts in the fields of paediatrics, child psychiatry, virology, epidemiology, immunology, and gastroenterology. After examining all recent research on measles, measles vaccine, MMR vaccine, Crohn’s disease and autism they conclude that:
* available virological and epidemiological evidence does not support a causal role for persistent measles virus infection in Crohn’s disease;
* no evidence indicates a link between MMR vaccination and bowel disease or autism;
* there is therefore no reason for a change in current MMR vaccination policy.
1999 Montgomery, Wakefield et al publish in the journal Gastroenterology a study of 7000 individuals born in one week in 1970. ’Unlike some other studies, we did not find a statistically significant association between measles infection at a young age and later Crohn’s disease or ulcerative colitis.’ However, children who caught both measles and mumps within one year appeared to be at significantly greater risk of Crohn’s disease. The study deals with naturally occurring infections - no child in the study received MMR vaccine and no links were made with it.
Montgomery S., et al Paramyxovirus infections in childhood and subsequent inflammatory bowel disease. Gastroenterology 1999; 116: 796-803.
1999 A team from the Royal Free Hospital and Public Health Laboratory Service investigate the history of 498 autistic children born in the North Thames area since 1979.They find:
* no increase in autism after MMR was introduced in 1988
* no difference in age of diagnosis between MMR immunised and unimmunised children
* no difference in MMR immunisation rates between those children with autism and the general population
* no link between the timing of MMR and onset of autism
The study concludes ‘No causal associations could be found between MMR and autism.’
Taylor, B. et al. Autism and measles, mumps and rubella vaccine: no epidemiological evidence for a causal association..Lancet 1999; 353: 2026-29
June 1999 An independent working party of experts set up by the Committee on Safety of Medicines examine records presented by a firm of solicitors showing an alleged association between MMR or MR vaccine and autism or Crohn’s disease. The working part concludes the evidence
* ‘did not support the suggested causal associations or give cause for concern about the safety of MMR of MR vaccines.’
* Committee on Safety of Medicines and Medicines Control Agency. The safety of MMR vaccine. Current Problems in Pharmacovigilance. Vol 25; June1999;9-10
Media messages
Health scares make good copy, but what we read in the media is not always accurate. For example, an article appearing on the front page of the Evening Standard (1.6.99) headlined ’New alert on measles jab for children’ implied fresh evidence linking the MMR vaccine with bowel disease.
In fact the study in question (Montgomery’s) found no association between IBD and measles vaccine and not one child in the study had received MMR. Nevertheless implications were drawn and tenous links made resulting in a front page shocker which was widely picked up by other nationals.
There are other kinds of misleading reporting, such as heart-rending reports where parents claim the MMR injection has led to autism in a child, pointing to a close relationship in time. However, a temporal association (autism usually develops in the second year) is not the same as causation and no conclusive proof has ever emerged that the triple inoculation causes autism.
The dynamic between doctors and patients has changed too. We have all become consumers and doctors now have to justify with evidence everything they do.But if we’ve lost faith in the medical profession what’s to take its place? The media? The media fills the void opened by our loss of faith. We rely on it for much of our medical and scientific knowledge today though it’s hard for the public to distinguish sound from unsound science. Blame and conflict are its fuel and all too often the casualties are truth and accuracy.
This is where independent bodies and the voluntary sector can come in - providing an alternative source of information.
If you have questions ...
... relating to rubella and immunisation contact us.
More complex enquiries ...
... concerning rubella and MMR may be addressed to Pat Tookey, Department of Epidemiology and Public Health, The Institute of Child Health, University of London, 30 Guildford Street, London WC1N 1EH tel 020 7242 9789, or to the Health Education Authority, Immunisation Programme, Trevelyan House, 30 Great Peter Street, London SW1 2HW tel 020 7222 5300.
Further information
The following leaflets are useful sources of information.
* Factsheet - About Rubella
* Rubella - questions and answers (Health Education Authority,1996)
* MMR - The Facts (Health Education Authority, 1998)
* Immunisation factsheets (Health Education Authority and the Department of Health). These are geared towards health professionals and include factsheets on MMR immunisation.
Minor ailment, major consequences
Barbara Scholten’s daughter Anneke, now 26, was born with congenital rubella syndrome.She had liver and heart problems, a cataract, hearing loss, learning disabilities and difficulties with communication and eating.
Barbara still doesn’t know from whom she got rubella. " It’s a minor ailment with such drastic consequences. And it’s always worried me that someone with rubella may seem unaffected but could still be a carrier and spread it unwittingly, " she says.
"I am concerned about the drop in MMR uptake. Of course a child should be well when he’s vaccinated, but parents should consider the consequences before rejecting it out of hand.They shouldn’t be lethargic.
"Everybody knows someone with cancer but rubella has become so rare that people think it can’t happen to me. But it can."
