(Trigger Warning - child death) Meningitis B catch up programme (petition included)

[prm]

I'm glad to hear the petition has now reached almost 800,000 signatures and it has been confirmed the House of Commons will be meeting with affected families, gathering facts and debating the petition to vaccinate ALL children. I have no idea what classes as an epidemic but if the government were given the opportunity to stop a terrorist attack or a major earthquake that was going to kill or seriously injure 1850 children every single year, surely they would do everything in their power to stop it, at any cost!

[bawdy-nan]

As I have mentioned before, I support a vaccination programme. But it is also interesting to consider the response and public attitude to risk and statistics.

The news this week that 40,000 deaths (and many, many more people affected by ill health) are caused by air pollution is shocking but not, it seems, as big a worry for parents as the 180 potential deaths from meningitis.

I think it's probably because with the vaccination it's felt you can have a direct and positive impact on the risk your child faces whereas with air pollution (and the biggest cause is cars) the ability to limit the risk is more nebulous despite the fact that our children are much more at risk from this threat to their health.

I wonder also whether it's to do with the complex and challenging nature of the solution to air pollution and how many of us are part of the problem insisting we "must" be allowed to drive our cars wherever we please.

[DaveR]

http://www.ft.com/cms/s/0/3cd78d5a-da38-11e5-a72f-1e7744c66818.html#axzz4106xJOeL

[tarafitness]

Can you paste the text from the article? I don't have an FT membership

[DaveR]

Health spending cannot be set by fans of Facebook and Instagram

Pictures of dying children come up against the hard facts of funding, writes Anjana Ahuja

To have the option of saving a child?s life and to reject it seems more than callous. It is the ugliest of affronts to human dignity. This sentiment is behind the largest ever public petition to the UK parliament. By Tuesday morning, a campaign calling for all children under 11, not just babies, to be vaccinated against meningitis B had acquired more than 750,000 signatures ? far more than the 100,000 required to trigger a parliamentary debate.

Many signatories were stirred into action by photographs of dying children, posted by bereaved parents on social media.

Each photograph brings a statistical rarity wretchedly to life. In an era when government spending priorities on healthcare are shaped by data and statistics but the currency of democracy is social media, clashes between populism and prudence are inevitable. We are moving into perilous territory: a healthcare system that bends under the weight of public opinion runs the risk of overpaying for drugs and eventual collapse.

The brain and spinal cord are protected by membranes called the meninges, which become infected and inflamed in meningitis. The flu-like illness can be caused either by a virus or, more worryingly, by bacteria. Bacterial meningitis is often associated with septicaemia (blood poisoning), which can result in amputation, organ failure or death.

The disease can move quickly and aggressively, especially in very young children, with meningitis B accounting for 90 per cent of the roughly 2,000 cases seen in Britain each year. About one patient in 10 dies. The infection is adept at hiding from the immune system, making it a tough therapeutic target, but the Swiss-based pharmaceutical company Novartis struck gold in 2013 with Bexsero, the first vaccine produced by ?genome-based reverse vaccinology?. By 2015, Bex?sero was in the hands of GlaxoSmithKline and approved for inclusion on the UK?s immunisation schedule for under-ones. (Parents of older children are seeking the vaccine privately and supplies are running short.)

Since meningitis B is thankfully rare, it is difficult to evaluate Bexsero?s efficacy; the toll can fluctuate naturally and has dropped by roughly half over the past decade. The vaccine?s effectiveness has been deduced from lab tests only, which show that it stimulates the production of antibodies. The UK, in fact, is the only country with Bexsero on its childhood immunisation programme.

The main reason the vaccine has not been adopted for older children is cash. In the UK and many other countries, new therapies and vaccines must pass a stringent cost-benefit analysis, tied to a metric called ?QALY? (quality-adjusted life years). The rule of thumb is that if a new treatment gives a patient an extra year of good quality life for ?30,000, then it is worth the money.

In a system of finite resources, however, this means that for every treatment that is funded, another must be rejected. It is worth noting that when the UK?s Joint Committee on Vaccination and Immunisation first considered Bexsero in 2013, it rejected the vaccine outright, as not cost-effective at any price.

In an ideal world, we would all wish for every child to be vaccinated against every preventable disease, and for every sick person to get the very best treatment. In the real world, that would cost the earth and most people do not want to pay the taxes needed to sustain a healthcare system capable of satisfying infinite demand.

And so, alas, decent public health experts and epidemiologists must carry out the thoroughly indecent business of advising ministers on which conditions merit our money and, as a result of balancing the equation, which conditions should miss out. Sadly, social media rarely shows both sides of the equation.

[LondonMix]

Thanks DaveR-- very good article regarding the complexities of the issue.

DaveR Wrote:

-------------------------------------------------------

> Health spending cannot be set by fans of Facebook

> and Instagram

> Pictures of dying children come up against the

> hard facts of funding, writes Anjana Ahuja

> To have the option of saving a child?s life and to

> reject it seems more than callous. It is the

> ugliest of affronts to human dignity. This

> sentiment is behind the largest ever public

> petition to the UK parliament. By Tuesday morning,

> a campaign calling for all children under 11, not

> just babies, to be vaccinated against meningitis B

> had acquired more than 750,000 signatures ? far

> more than the 100,000 required to trigger a

> parliamentary debate.

> Many signatories were stirred into action by

> photographs of dying children, posted by bereaved

> parents on social media.

> Each photograph brings a statistical rarity

> wretchedly to life. In an era when government

> spending priorities on healthcare are shaped by

> data and statistics but the currency of democracy

> is social media, clashes between populism and

> prudence are inevitable. We are moving into

> perilous territory: a healthcare system that bends

> under the weight of public opinion runs the risk

> of overpaying for drugs and eventual collapse.

> The brain and spinal cord are protected by

> membranes called the meninges, which become

> infected and inflamed in meningitis. The flu-like

> illness can be caused either by a virus or, more

> worryingly, by bacteria. Bacterial meningitis is

> often associated with septicaemia (blood

> poisoning), which can result in amputation, organ

> failure or death.

> The disease can move quickly and aggressively,

> especially in very young children, with meningitis

> B accounting for 90 per cent of the roughly 2,000

> cases seen in Britain each year. About one patient

> in 10 dies. The infection is adept at hiding from

> the immune system, making it a tough therapeutic

> target, but the Swiss-based pharmaceutical company

> Novartis struck gold in 2013 with Bexsero, the

> first vaccine produced by ?genome-based reverse

> vaccinology?. By 2015, Bex?sero was in the hands

> of GlaxoSmithKline and approved for inclusion on

> the UK?s immunisation schedule for under-ones.

> (Parents of older children are seeking the vaccine

> privately and supplies are running short.)

> Since meningitis B is thankfully rare, it is

> difficult to evaluate Bexsero?s efficacy; the toll

> can fluctuate naturally and has dropped by roughly

> half over the past decade. The vaccine?s

> effectiveness has been deduced from lab tests

> only, which show that it stimulates the production

> of antibodies. The UK, in fact, is the only

> country with Bexsero on its childhood immunisation

> programme.

> The main reason the vaccine has not been adopted

> for older children is cash. In the UK and many

> other countries, new therapies and vaccines must

> pass a stringent cost-benefit analysis, tied to a

> metric called ?QALY? (quality-adjusted life

> years). The rule of thumb is that if a new

> treatment gives a patient an extra year of good

> quality life for ?30,000, then it is worth the

> money.

> In a system of finite resources, however, this

> means that for every treatment that is funded,

> another must be rejected. It is worth noting that

> when the UK?s Joint Committee on Vaccination and

> Immunisation first considered Bexsero in 2013, it

> rejected the vaccine outright, as not

> cost-effective at any price.

> In an ideal world, we would all wish for every

> child to be vaccinated against every preventable

> disease, and for every sick person to get the very

> best treatment. In the real world, that would cost

> the earth and most people do not want to pay the

> taxes needed to sustain a healthcare system

> capable of satisfying infinite demand.

> And so, alas, decent public health experts and

> epidemiologists must carry out the thoroughly

> indecent business of advising ministers on which

> conditions merit our money and, as a result of

> balancing the equation, which conditions should

> miss out. Sadly, social media rarely shows both

> sides of the equation.

[Ellie78]

Erm, aren't petitioners simply highlighting an important issue for public debate, rather than flexing social media muscles of somehow ignorant populism as this infers.

Yes. We should have regular debates about where to spend public money and what our 'ideal world' is.

Don't tell me how to use democratic process.

[meadow408]

Not very well researched though...some European countries already have MenB as part of routine vaccinations.As well as Epat B vaccine...

[TE44]

Uk is first country in the world to add this vaccine to routine programme.

[prm]

Yes of course the NHS doesn't have money to pay for everything but why for example are prescriptions free for all children. How about if those who can afford pay for they own child prescriptions and instead the NHS uses the money to vaccinate everyone against Men B and save lives?

[devsdev]

There was a GP on Newsnight who said about 139 children between the ages of 1 and 5 are affected each year (by death or serious injury) as a result of Men B. The cost of immunising all of them would be circa ?130 million (I hope I got the numbers right). On a cost-benefit analysis unfortunately the numbers don't add up. This is not to say that I don't agree with the matter being debated in Parliament (though obviously important issues are being overshadowed by numpties debating this Brexit BS...but another issue) - at least the issue, the vaccine, the choices and the reasoning behind government/NHS decisions will be publicised and considered.

[meadow408]

No TE44, in Italy is part of the routine vaccination programme.From this year at least, I know it first hand.

[TE44]

http://www.sciencemag.org/news/2015/12/new-vaccination-strategy-stirs-controversy-italy

If you read further down link, men b vaccine is

Mentioned, it may have been added since then.

[LondonMix]

That's a possibility but that's the first step in transforming the NHS from a free at point of service into a means tested benefit. Who knows if that's what will end up happening- the NHS is at breaking point. To be honest, most high earners have private insurance anyway so I'm not sure how much additional help means testing will be (in general).

prm Wrote:

-------------------------------------------------------

> Yes of course the NHS doesn't have money to pay

> for everything but why for example are

> prescriptions free for all children. How about if

> those who can afford pay for they own child

> prescriptions and instead the NHS uses the money

> to vaccinate everyone against Men B and save

> lives?

[DaveR]

I think the point being made in the article is not that this vaccine should or should not be made available to children of any particular age, but that social media driven petitions are a poor way to make health policy. Everybody understands (I hope) that healthcare demands are infinite and budgets are not, so funding decisions have to be made that result in effective treatment being denied on the grounds of cost. Govts design a process for those decisions to be made, and then people try to subvert that process - should that be applauded/supported? That's the question.

[Saffron]

That's not a baised free assessment just bc the government has set the policy. In fact, each government subverts policy to its whim, resulting in chronic underfunding and making meaningless any arguments as above based on the logic of funding as a deciding element.

[LondonMix]

I agree that just because the government appoints experts to make a decision, that decision is not automatically right. Doing this type of cost benefit analysis is not an exact science?how you weigh certain priorities- preventative measures vs. treatment, funding for the young vs everyone else etc is in some part a value judgement.

However, the larger point still stands. Even an intelligent member of the public cannot fully appreciate what the trade-offs for implementing this might be regarding the NHS budget which is why it?s dangerous for public opinion to determine policy. Asking for a review and a debate though is totally fair.

Policy by public opinion can be disastrous. The referendum system is why California is bankrupt. People only vote for new spending and veto all attempts to raise taxes to pay for them?

[DaveR]

"That's not a baised free assessment just bc the government has set the policy. In fact, each government subverts policy to its whim, resulting in chronic underfunding and making meaningless any arguments as above based on the logic of funding as a deciding element."

This literally makes no sense at all. Governments don't subvert policy, they make policy, based on the legitimacy derived from democratic elections. They are answerable to parliament and the courts, and to the electorate when they want another term. This is UK constitution 101.

[esme]

Bumping - thanks for posting, SO important we win this particular battle with the government.

[Saffron]

DaveR Wrote:

-------------------------------------------------------

> "That's not a baised free assessment just bc the

> government has set the policy. In fact, each

> government subverts policy to its whim, resulting

> in chronic underfunding and making meaningless any

> arguments as above based on the logic of funding

> as a deciding element."

>

> This literally makes no sense at all. Governments

> don't subvert policy, they make policy, based on

> the legitimacy derived from democratic elections.

> They are answerable to parliament and the courts,

> and to the electorate when they want another term.

> This is UK constitution 101.

They set policy to their own benefit. Governments are not altruistic by nature. They seek policies to keep power. Naive to think otherwise. Two words: champagne budget.

So the same people who set policy and budgets for the masses, can quite easily afford private healthcare for themselves, as well as slurping champers at public expense.

Just because a policy is set by a government does not necessarily make it objective or valid. Likewise, just because opinions/information are conveyed through petitions, does not necessarily make them invalid or irrelevant.

[devsdev]

Already posted in another thread by mistake, but here is the official DoH response to the petition sent out today:

MenB vaccine is offered to infants, free on the NHS, at 2 months with further doses at 4 and 12 months. The programme, as advised by independent experts, offers protection to those at highest risk.

As the UK, we are proud to have been the first? and to date the only - country in the world to introduce a national, publicly-funded MenB immunisation programme for infants using the Bexsero vaccine. We are leading the world in offering children protection from this devastating disease.

National immunisation programmes are introduced on the advice of the Joint Committee on Vaccination and Immunisation (JCVI), the independent expert body that advises the Government on all immunisation matters. https://www.gov.uk/government/groups/joint-committee-on-vaccination-and-immunisation

JCVI reviewed all available evidence before it advised on eligibility for the Bexsero vaccine. It recommended that MenB immunisation should be routinely offered to the group of children at the highest risk - infants at two months of age with a further dose at four months and a booster at 12 months, provided that the vaccine could be procured at a cost-effective price. There is a duty on the Secretary of State for Health to ensure, so far as is reasonably practicable, that the recommendations of the JCVI, are implemented.

The programme started on 1st September 2015 for those babies due to receive their primary immunisations starting at 2 months of age on or after 1 September 2015 (i.e. those born on or after 1 July 2015). A one off catch-up programme was recommended by JCVI for infants born from 1 May 2015 to 30 June 2015 (aged 3 or 4 months of age when the programme launched) when they attended for their primary immunisation appointments. This ensured that those infants were offered the vaccine before the winter peak of the disease. By May 2017, all children under the age of two years will have been offered the vaccine. The vaccine is also available for a small number of older children and adults who are at increased risk of infection, such as those with no spleen. Early indications are that the vaccine has been very well accepted by parents and coverage is likely to be high.

With this programme, our priority is to protect those children most at risk of MenB, in line with JCVI?s recommendation. The NHS budget is a finite resource. It is therefore essential that JCVI?s recommendations are underpinned by evidence of cost-effectiveness. Offering the vaccine outside of JCVI?s advice would not be cost effective, and would not therefore represent a good use of NHS resources which should be used to benefit the health and care of the most people possible.

When any new immunisation programme is introduced, there has to be a cut-off date to determine eligibility. While this is extremely difficult for parents whose children aren?t eligible there is no other way of establishing new programmes to target those at highest risk without introducing inequalities. This approach is supported by the best evidence and by independent recommendations. JCVI considered older age groups (1-4 year olds) but did not advise a catch-up programme in view of the marginal cost-effectiveness of even the infant programme. JCVI considered that the priority should be the implementation of the primary immunisation programme for infants. They also considered a programme for adolescents but advised that further research was needed Preparatory research has been commissioned and is underway.

There are many bacterial, viral and other causes of meningitis (inflammation of the lining of the brain and surrounding tissues) and septicaemia (blood poisoning). Successful vaccination programmes have already reduced the risk of these serious diseases. Current rates of group B meningococcal disease are low. In the early 2000s there were more than 1,600 cases in England, compared to around 400 cases in 2014.

The vaccine should provide direct protection against MenB for infants and those who are at increased risk of meningococcal disease. However, not all strains of the group B meningococcal bacteria are covered by this vaccine and cases can still occur in vaccinated infants and children. There are also other strains of meningococcal disease for which there is currently no vaccine. It therefore remains important for parents to be alert to the symptoms of meningococcal disease such as fever, blotchy skin, refusal to feed, irritability, cold hands and feet, rash, muscle pain, and a stiff body with jerky movements or else floppy and lifeless. They should trust their instincts and seek urgent medical attention if they have concerns.

Department of Health

[TE44]

Petition rejected.

http://www.fiercevaccines.com/tags/bexsero

[LondonMix]

Thanks for the last two posts.

The rejection of the petition seems like the right outcome unless someone has credible evidence that the JVCI has lost its independence.

[Saffron]

I don't think anyone questions the JCVI's judgement, in relation to current financial limitations. However the JCVI does not set the health budget. They simply have to factor in the budget they're given. The funding for health services is set by the government and is hardly independent or free from bias.

[Saffron]

The financial argument is not the only one with validity, and although the JCVI members are considered 'independent' their assessment criteria are far from bias-free:

It has become apparent from the controversy surrounding decisions about whether Bexsero should be publicly funded that the framework for CEA is inherently biased against interventions that prevent uncommon but severe illnesses in children for the following reasons:

? The EQ-5D, the tool used by the National Institute for Health and Care Excellence and the JCVI for assessing impact on quality of life, is insensitive in young children

? The high discount rates applied to the costs and benefits of an intervention disadvantages children and preventative interventions such as vaccines by placing much higher importance on immediate health gains compared with future ones

http://www.bmj.com/content/350/bmj.h308/rr-3

At least three sides to every story, as the saying goes.