Questions and discussion about the costs involved in rolling out the Meningitis B vaccine

[Myredcardigan]

Partly a TAAT but obviously it's all over the news and Sugar has specifically asked me to start this thread to begin constructive debate.

So, from my pov, I totally get the massive cost implications of vaccinating all those under 11. However, id like to hear from anyone who is in the know and can tell me if link to data showing what the actual cost would be. I'd also like to see what the cost implications of treating children with the disease are. Both the acute care, which will cover all infected children, but also the long term costs both medically and educationally of treating those children lucky enough to survive but sadly left with life long disabilities. I know from an educational POV that a non mainstream state school place can cost 40% more. Sometimes much more. But I have no idea on the medical side. Questions such as,

-How much does it cost the NHS in acute care costs to treat a child with Men B for 1wk

-What about non acute NHS recovery support inc OT

-If you are the parent of a deaf child or are deaf yourself, can you comment on the cost implications of supporting your child (rightfully) both medically and educationally?

-Can anyone comment on the NHS and educational costs involved in supporting a child who is an amputee?

Any other relevant stats and info please add to the thread. Please remember that Sugar has asked for this thread to be put out there. Of course, from a personal perspective I don't think any of this should matter but should the petition get its debate then this is what they'll be looking at.

Isn't the Men B strain the biggest killer though?

www.telegraph.co.uk/news/health/news/9817891/Vaccine-against-last-major-killer-strain-of-meningitis-is-licensed.html

Diagnostic tests how long do they take.
It took 10 hours for Daisy to die
Just 10 hours

Even if that test was widely available (and I cannot see it being available in every GP surgery, drop-in, out of hours, A&E anytime soon) it still has to factor in time for parents to become alarmed, time to travel to surgery, time to wait to see doctor, onward travel to A&E in some cases. I would far rather have a vaccination that has been evaluated and found to be safe than ever find myself going through that situation. It may not be 100% effective, but if it lessens the chances of my child ever needing that diagnostic procedure then I am all for it.

I do agree that better diagnostic tests are needed, as are better resourced GPs and A&E, but prevention is better than cure no matter how fast that cure is obtained in this case.

And looking at the website for that diagnostic test, it is 60 mins from sample to result. That 60 mins could still mean life or death.

I got Daisy to hospital at 5.30pm she died at 3.42 am.
Meningitis B and sepsis killed her

Whilst my ds turned out to have sepsis (not meningitis) the symptoms were fairly similar - rash, delirious, life threatening etc

When you look at this chart you can understand why the Meningitis specialist was turfed out of his bed in the middle of the night. www.meningitis.org/symptoms.

He was sent home three times before anyone realised what was going on. I was lucky it wasn't meningitis.

NZ a bit ahead of you, big problem with Men B in 90's, NZ developed a MenB vaccine, given to all under 20 for a couple of years, then just under 2s til 2008 and finally withdrawn in 2011. 1.5m got the vaccine, minimal Men B (of that strain) now, herd immunity, and the cost of, and of complications of, the vaccine outweigh the benefits.

To answer op: Do read the JCVI paper carefully:

"Even in the most favourable of scenarios no infant programme could demonstrate cost-effectiveness at the list price for Bexsero®"

I have signed the petition, which for those who have read it know that it asks that it is to be made available for all under 11's. But realistically if offered the vaccine for child of mine over 5 would decline and if child over 4 would not pay for it while in short supply unless a younger sibling not vaccinated. Just my view. I cannot believe what it must be like for Sugar and other parents who have seen a child die of a potentially avoidable infection.

A child presenting meningitis symptoms needs intensive treatment. It really doesn't matter whether the meningitis is viral, bacterial or caused by chickenpox. To prevent a child like Daisy dying we need a several pronged attack. A diagnostic test is no use if you have to wait hours in A and E or can't get a GP appointment to be seen.

Poor little a Will Roberts died as a result of slow care in A and E. He was someone's little boy and not just a statistic.

www.dailymail.co.uk/health/article-2588446/Harmless-No-chickenpox-killed-one-boys-left-stricken-years.html

He had a four hour wait to be seen. Four hours is to long to wait when a child is seriously ill whatever the cause. We need to stop children getting seriously ill in the first place with vacinnation. We also need decent emergency services.

Regarding diagnostic tests, from my experience, official diagnosis wasn't as important as recognising the symptoms and treating for meningitis. Our GP didn't recognise the symptoms, or ask the appropriate questions to rule out meningitis.

When we got to hospital, dd saw a very experienced consultant who thought she may have meningitis and put her straight on IV antibiotics. She didn't get the official diagnosis until she's had a lumbar puncture and got the cultures back. I think that may have been a day or two later. If we'd waited for the diagnostic test results before treatment, she probably wouldn't be with us.

Daisy did not have a rash, she was poorly but I didn't realise how bad she was. Got a GP appt for 3.55 so had to wait most of the day. He sent us straight to hospital, I did not wait it was obvious by then she was very ill so I ran in with her. The drs took her immediately and put on iv.
I had abandoned my car, the bastards clamped it and it cost an awful lot to get it back. Didn't need that but people are so uncaring.
I give up

1234 "Isn't the Men B strain the biggest killer though?"

Well, at the moment MenB has the most cases so yes, there are more deaths but Men W cases have been increasing since 2009 and it has a particularly virulent strain of the bacteria with a higher fatality rate. It currently makes up about 25% of cases in the UK.

WhoKnows, yes, 60 minutes can mean life or death which is why it would be useful to have a test which can identify all strains of Meningitis within that time, enabling quicker treatment with the appropriate antibiotics for the strain. Prompt treatment with the correct antibiotics could save lives or reduce the risk of complications and disability. My point was that because such a test could benefit across all age brackets for all types of meningitis, it could mean that it is more effective at saving lives than vaccinating a lower risk section of the population.

ReallyTired, that is true about waiting times. However, vaccinating a lower-risk section of the population with a vaccine of unknown effectiveness (as yet) may not be any use either.

Onyka, this new diagnostic test returns results in 1 hour showing which strain is present.

Sorry - it could mean that it is more effective at saving lives than vaccinating a lower risk section of the population against one strain.

"I had abandoned my car, the bastards clamped it and it cost an awful lot to get it back. Didn't need that but people are so uncaring.
I give up"

That is dreadful and completely illegal. The extracted money from the parent of a dying child. I realise that its irrelevent to the thread, but the clamping company were devoid of basic compassion. I am sure the small claims court would support you in getting your money back, especially if you show the judge Daisy's death certificate.

We do care. Both Daisy and Will's lives could have been saved by prompt medical attention. Will's mother is a GP and if she could not get medical help fast enough to save her son then the rest of us have little hope.

I support the idea of rolling out the vaccination to older age groups. However I don't think that the vaccination is enough.

Can't be botherred to go to court again.
Actually if we are factoring costs, there are some that nobody thought to mention
Autopsy, Coroners Inquest, Funeral, SSP for parents and grandparents, Bereavement counseling (still ongoing) Divorce. Alchohol counseling and treatment for bereaved Father (turned to drink after Daisy's death) GP appointments x immeasurable. Hospital treatment for my breakdown and suicîde attempt

How awful sugar. The emotional costs also turn into financial costs for the country as you have so eloquently pointed out.

I am so sorry Sugar. We need to do more to save children's lives

Yes, ReallyTired. I think we all agree on that. We just have different opinions on the best way to go about it.

What a disgusting disrespectful lack of compassion. Unbelievable !
So long as it's someone else's child eh
Let's let other peoples children be the guinea pigs eh

Walk a mile in my shoes !

Sugar, is that aimed at me?

I have plenty of compassion and have expressed it on this and other threads towards people who have shared their experiences, including you. You seem to be taking it personally if people point out that we don't know enough about effectiveness of the vaccine yet to determine if a roll out to other age groups will actually save lives. Seeing as this thread was started to discuss and compare costs it makes sense to discuss alternatives that may be more cost effective e.g. better diagnostic tests, that may, in fact, result in more lives being saved across more age groups and fewer disabilities.

I realise that this is an emotive topic for you and I can understand why you feel the way you do about the vaccine but, in the nicest way possible, if you find it too upsetting to discuss and compare costs and figures and statistics on a thread that is about those things then maybe you should hide the thread?

All the Meningitis charities seem to think it should be rolled out to include older children. They employ top scientists and conduct respected research projects. Why would they be wrong?

bumbley, an hour is a long, long, long time when you have a deteriorating child in front of you.

Even if it does take an hour in trials, it will take longer for someone to take the sample and write the relevant labels and forms, get a porter to run it up to the lab, for the biomedical scientist to drop everything and run the test, and then to get the results back to the treating team.

I'm not sure how it would help though in that golden hour as you are going to throw broad spectrum antibiotics at the patient anyway in the hope of saving them. It will be useful to tailor treatment later on, but I can't see it helping straightaway.

We definitely need to roll out the vaccine and ASAP. I understand why some parents will be anxious about the vaccine, as they are with other vaccines, especially if there's a family history of severe allergies and/or other risk factors.

1234 If you read this from Men.org it says:

To see the end of meningitis in the UK we need the widest possible protection against all forms of the disease, including MenB. Men B has for decades been the leading cause of life-threatening meningitis in the UK. That may mean extending the current vaccination to other age groups. But we need more evidence in order to make a credible case to policy makers.

In order to make the case for widening access to the vaccine, we have to have evidence that the vaccine is working as it was supposed to work, and advocate a strategy for delivering it that will benefit the most people.

This is why MRF is investing in research to find out if the vaccine works as well as we all hope it will

So they're also saying that it's necessary to have information on effectiveness. If it is shown to be as effective as they hope, then they can consider rolling it out to other age groups. If it isn't as effective then they may need to try a different approach.

DinoSnores, yes I understand that there are other delays around the test. People seem quite excited about it though and think it will make a difference. Perhaps knowing exactly which antibiotics to use within hours rather than giving broad spectrum for the couple of days that it currently takes to get results back makes a difference? Also, a scientist in one of the articles commented on the benefits of not having to use broad spectrum antibiotics with the growing concern around antibiotic resistance.

So.... it is a great idea but in order to convince politicians to find some money to fund the vaccination they will have to jump through many more hoops while children needlessly die. (Even while a shed load of money is spent looking after children left disabled by Men B)

Flabbergasting.