Forums > Moaning forum > Cure for meningitis found; rejected because of cost

CURE FOR MENINGITIS FOUND; REJECTED BECAUSE OF COST
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What a crazy, crazy World we live in eh?

As some will know, I'm fairly pro-active in raising awareness & cash for meningitis charities since our daughter contracted it over 3 years ago, & for years, theses guys have been working so hard to find a cure for this killer disease.

A while ago, a cure was found for meningitis B. That is the most common form of the disease & is the one that cause septicaemia & limb loss etc. Pretty great news, right?

Well, after months of waiting for a licence to start testing, it has been rejected on grounds of cost. Wow. Nobody saw that coming & it's an understatement to say everyone is gutted.

Seems crazy that after 20+ years of fundraising, R&D & heartbreak, no one ever thought of tapping the guys on the shoulder & saying 'you know, even if you do find a cure, chance is it'll be too expensive to actually use'

Seems the only way it will be pushed through is if the numbers of people contracting & dying go up.

Let us all just pray that when a cure for cancer is found, it won't be rejected on cost...

You can still help, by signing this petition to get the menB vaccine pushed through. The more numbers we have, the better the chances of a review.

Updated July 25, 2013 at 9:40 AM

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Cheers,

Gwaredd

steelesigns.co.uk

The link is Barry'd G.

Welcome to the pharmaceutical world. I have pretty close links with a big company and unfortunately it's far too common.

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How about not having a sig at all?

carlos said...

The link is Barry'd G.

Cheers dude. Fixed.

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Cheers,

Gwaredd

steelesigns.co.uk

I thought it was rejected on the grounds that there was no empricial evidence yet to determine how successful the vaccine is - because no other country has yet adopted it. Hence it doesn't stack up economically.

Unfoortunately there's a limited supply of money available to spend on drugs and some poor sods have to take the decision on whether they should be made available.

There will always be questions about effectiveness or evidence of any new drug until trials have taken place. Unfortunately, without the green light, no trials will take place to provide any evidence. It's a vicious circle.

All we can do now is bombard them with pressure & hope they cave.

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Cheers,

Gwaredd

steelesigns.co.uk

Signed.

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Out of step with the forum.

Gwaredd said...

There will always be questions about effectiveness or evidence of any new drug until trials have taken place. Unfortunately, without the green light, no trials will take place to provide any evidence. It's a vicious circle.

All we can do now is bombard them with pressure & hope they cave.

And even then, someone else won't get a drug they desperately need because £xm has just been spent on a vaccine for Meningitis B. It's a vicious circle alright.

One of the luckiest things that has happened to MicroChoo is contracting meningitis. He was in hospital with a chest infection and they immediately pumped him full of antibiotics. The tests came back that it was meningitis B and it was caught in time.

However, when his heart was racing at 200bpm the doctors could hear that something wasn't right and that began the process that lead to him being diagnosed with a hole in his heart.

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Romantic BDSM

Gloucester's answer to Eddie Jordan

It's scary how common it is Jimmy. One thing we've found since we've started fundraising is just how many people have been affected by it. The numbers just don't add up.

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Cheers,

Gwaredd

steelesigns.co.uk

Only effective in 7 in 10 variants of the b meningitis, I wonder if that's the reason why. Other countries haven't adopted it for similar reasons either :( ?

The MMR jab might have caused my sons developmental delay and autism, who knows, I believe it might well have been because of his difficult birth however meningitis can be devastating and if there was a vaccine available I'd have paid for it.

If it really isn't cost effective but works maybe the NHS could offer administer it but the parents pay for it ?


'tis signed.

Updated July 25, 2013 at 12:31 PM

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Your opinion is very important for me. Thank you please.

done.

Signed.

Signed.

I know from first hand experience, that this is a horrible thing. My eldest brother caught it at the age of 3 and he's now mentally disabled and blind. It caused ALOT of heart ache in our family.

Following that, my son caught it when he was 1. After what happened to my brother, you can imagined what my wife and I went through. Luckily, he came out of it with no effects.

Hopefully they can sort this out and atleast get trials up and running.

As you said, it's a horrible world that we live in.

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Nuts on the road

_Mick_N said...

Only effective in 7 in 10 variants of the b meningitis, I wonder if that's the reason why.

Still, 7 out of 10 is pretty bloody good & research is always ongoing.

Seems such a kick in the teeth to finally make a breakthrough only to be thwarted by suits. Dread to think how many millions & millions have been raised to get this far...

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Cheers,

Gwaredd

steelesigns.co.uk

Signed.

I had this type of Meningitis when I was 9, was really bloody un-pleasent and I was ill with flu/influenza like symptons for weeks before I got taken into hospital. I was there for a week, but even though it was caught relatively early on it affected me in ways that didn't affect me that much, but none the less did. I suffered from memory loss, even now my short term memory is still affected from having the disease (not significantly, but a doctor explained it to me in 2007.) I also find working with numbers terribly difficult, something that could be related as I never had trouble with Maths before contracting the disease (Went from being top of Maths class to being one of the worst performing students.) Other things were my taste in food changed overnight (Used to love hotdogs and Beef burgers, didn't touch either of them for about 10 years.) I also have quite a lot of grey hairs as well, somehow this is related to the disease as well (Though I'm not sure how.)

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Stolen Orions on fire off the hard shoulder of the M8. I watched neds litter in the dark near the Tennents shop. All those... moments... will be lost in time, like [coughs] tears... in... rain. Time... to die...

Cheers all for signing. As much for your benefit as anyone else's.

Even in a small forum such as this, with so few views on this post, we can already see how many people it has effected at some stage. The trouble with bacterial meningitis is that it presents itself in so many different ways & speeds. Some kids go from playing happily in the garden, to being on the slab within 4 hours.

Really is a nasty bastard of a disease & always seems to be one that doctors are terrified of diagnosing, which is why a vaccine is a must.

Thanks again guys.

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Cheers,

Gwaredd

steelesigns.co.uk

Signed. Seems like lunacy. Lost a friend of my sister to the disease when we were at school :(

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Knackered old hairdresser's sh1tter

Signed.

I always like to think that somehow this is for the greater good, it's such an emotive subject though and couldn't imagine being in a situation where it was needed.

Dave!

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I came here to drink milk and kick ass..... and i've just finished my milk!!!!

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