Meningitus B: Does the government think this is an acceptable response to 800k signatures on a petition?

[MythologicalPersonage]

petition.parliament.uk/petitions/108072?reveal_response=yes

It is an adequate response.

I do not understand why it has suddenly become such a big deal. The vaccine has been available privately for almost a year - plenty of you could have had your children vaccinated before now if you had bothered. Saying you didn't know it was available is not an excuse. It has been well documented in the news for years.

By "you" I don't mean the people on this thread, I mean all those on other threads complaining that there are no supplies and huge waiting lists

The problem here is that because this is such an incredibly emotive issue it will never be possible to have a balanced discussion about it on a forum such as MN. Because there are always going to be parents who have tragically lost their children who will, understandably, take the position that any parent would do anything if they had been the one who had lost their child.

But in truth this and any other topic which involves potentially life saving decisions needs to be evaluated by people who are not emotionally attached to the subject.

There is currently far too little evidence to support the need for blindly administering blanket vaccinations to children at vast cost to the NHS. For a parent of a child who has died or become seriously disabled through the effects of meningitis of course no money is too much to spend, but for a service which has to balance probability against risk every decision needs to be carefully considered.

Meningitis Now are of course going to be less than impressed by anything other than a full agreement to vaccinate all children.

They should also know that the frankly tiny cohorts make studies very difficult. They would have to recruit hundreds of thousands, if not millions, if children to the study and then do a long-term study, because only 5 in 100,000 children get MenB each year, which generates 120 cases, with 12 children dying and 12 children being severely disabled as a result of it. To be statistically valid, there would have to be a trend in data and as the numbers are so tiny, even one anomaly would make a huge impact.

Perhaps they shouldn't have tiresome petitions and debates then.

It's not just the cost of the vaccine itself, it's also the cost of delivering the vaccination programme. Billions of pounds spent in an attempt to reduce a rare disease even further. That's just not financially viable.

Sadly the NHS has to deliver vaccinations based on a cost/benefit analysis - not the individual cost/benefit but a nationwide cost and benefit. All treatments have to be assessed and costed with this in mind. That's why we get controversial decisions being made about certain cancer drugs, or funding for surgical procedures.

I don't mean to minimise the incredible devastation this disease can cause, but intervention programmes have to be delivered in a dispassionate, critical and effective way.

I think it's wrong
Nobody should suffer the death of a child when there is a vaccine that could prevent it

I thought it was a rare disease but my dd still caught it so could your child

I know sugar and I am so terribly sorry your beautiful girl died.

I was trying to explain the thinking behind vaccination programmes - of course however rare a disease is, if it's your child that caught it then it's not rare enough. However in epidemiological terms a rare disease is unlikely to receive massive funding to eliminate it.

Sugar21, it is a rare disease. 5 in 100,000. Somebody has to be in that 5, but it doesn't stop it being rare.

My DD1 has a brain malformation and goes to special school. When she started year R there, I looked at the statistics. 75% of special school places go to boys. Girls are more likely to spend the earlier years at mainstream schools then transfer out when they can no longer cope. The statistic for year R girls attending special school is 0.4% - 4 in 1000 girls in year R go to special school. DD1 is one of those 4. That doesn't stop it being rare. Her school is full of children with conditions most people won't know about because they are rare. But the rare people still have to be somewhere.

My niece developed an extremely rare, extremely deadly cancer. They sent the biopsy off 4 times for retesting because she was older than the children who normally have it (she was 5,most children with it die before 2) and she responded well to chemo, when her tumor type normally doesn't. So she had a very rare presentation of a very rare cancer and was even more rare in that she went into, and has stayed in, remission. That doesn't stop it being rare.

Well here's hoping another Mners child is not a statistic.

Blue pill - You can keep telling yourself that the NHS hasn't got enough money

Red Pill - tax evasion/avoidance equates to the approximately the same budget as the NHS and the political establishment is not prepared to sort it out.

BreakingDad Agree but why don't the politicians take Google et al to task. Have they a vested interested?

Yes sugar, both parties have friends, family members etc closely tied to the city, thats why after successive governments no real change, still get market crashes, still get fat cat salaries, still get companies getting let off their tax responsibilities.

But the person on the street has to pull their belt in as 'we all in this together'

Theft from a person or company is criminal and so it should be, tax evasion is still seen as jolly japes, "it was all a big misunderstanding".

I think there's one important fact that is being missed in all this talk of whether the cost is worth it, and that is that WE DON'T KNOW THAT THE VACCINE WORKS.

It's still in the evaluation phase, no reduction in cases can be seen as yet, and lab studies suggest that at best it gives 2.5-3 years protection (and may well be less, as immunity to some of the antigens really drops off very quickly). It makes no sense to spend hundreds of millions of pounds in rolling out a vaccine when we don't even know if there will be any benefit.

BreakingDad Just as I thought. Jolly bloody japes indeed
So effectively all vaccine could be funded if those masters of the con got their snouts out of the trough !

I agree YouCannot. That often seems to be overlooked - although I think lougie mentioned it up thread.

If millions were spent vaccinating now, before we have that information and we then find out that it isn't effective can you imagine the public outcry about how much money was wasted?

lougle - sorry!

Even at £20 per dose, do you think it is proportionate to spend £500 million to prevent 12 deaths and 12 major disabilities (official figures suggest that 1in 10 people who contract MenB and survive will have major disability) per year?

But I don't understand why parents can't be asked if they would like the vaccine for their children, as long as they would be willing to pay the £20 per dose?

£20 per dose is affordable to me, £150 per dose is not. And my daughter was born a week before the cut off date for the vaccine

Everything I have read says that there are no side effects and it is working so a bit confused about that aspect. Why would the meningitis charities push for it otherwise? Anyway if there is further work to be done it should have been debated at the committee and not decided ahead of time.

I paid for it. I reckon lots of others would do so. I would love to see a fundraising page for those who can't pay for it. How would I go about setting one up? Is this a good idea or not?

Hopefully the people making the vaccine will have seen the demand and up the amount they are making.

www.meningitis.org/facts

1234Littleham you'd have to raise millions to make even a small change. How would you decide who can and can't afford it?

Honestly, the risk of contracting MenB is 5 in 100,000. The risk of dying is 1 in 10, so 5 in 1,000,000. The risk of life altering effects is 1 in 4, so 5 in 400,000.

No fundraising effort by an individual will make a difference to the landscape of Meningitis B infection or outcome.

The guy who started one of the charities did so with no idea whether any change could be made so how do you know that raising at least some money for Meningitis B wouldn't help?

Maybe you are right but I thought it might be worth trying (with proceeds going to Meningitis Now to decide how best to go about change).

1234Littleham where have you read that there are no side effects and that it's working?

Below is the position statement from the JCVI when they reversed the earlier decision, and decided it was just about worth it for under 1s.

www.gov.uk/government/publications/meningococcal-b-vaccine-jcvi-position-statement

On p5 it says "There was however a lack of evidence on vaccine efficacy, since the vaccine had not yet been evaluated in an efficacy trial, and was not being used routinely in any country worldwide." In other words there is information on antibody production short term from lab tests, but no information on whether this will translate to a reduction in Men B cases in reality.

As for safety, they note that: "Data were too limited to identify rare adverse reactions to the vaccine, however the Committee agreed that the infrastructure and expertise available in the UK would allow the acceptability and safety of the vaccine to be assessed." In other words, before the vaccine was rolled out to under 1s the only safety data available were from clinical trials (around 6000 people total), but in order to assess whether there were adverse reactions more rare than that (say 1:10,000 for instance) they would need to monitor the reactions in the under 1s receiving the vaccine.

Before the UK rolled out Bexsero to under 1s no-one else had used this vaccine at a population scale. The world is watching what happens here to see whether a) it works to reduce Men B and b) there are less frequent adverse effects that are note-worthy. The UK populus is in a sense the first mass trial of this vaccine, and at this point no-one knows the answers to the two questions above.

In layman's terms the facts of the situation are laid out quite nicely here:

www.bbc.co.uk/news/health-35706020

But you're not talking about meningitis awareness raising, etc. You're talking about raising money for people to have their child vaccinated. To stop just one child contracting MenB, you'd have to vaccinate 20,000 children. Even using the £20 rate above, that's £400,000. To stop a child from having life altering effects, you would have to vaccinate 80,000 children, so £1.6 million. To stop a child from dying, statistically, you'd have to vaccinate 200,000 children, so you'd need to raise £4 million to stop one child dying.

That's what I mean. Also, that's without the costs associated with identifying recipients and administration.