Did anyone watch Nolan Live last night and be absolutely heartbroken by this kid and his father talking about a condition that is going to leave him in a wheelchair inevitably. There is a drug that can possibly make him walk for that little bit longer, but the health minister hasn’t approved it yet and would apparently cost too much to be approved.
by Interesting-Wolf9119
9 comments
Scenarios like this are very sad and are important to discuss every so often to bring the life changing consequences of high level decision making into focus.
The reality is that our health budget is already huge and it is finite – there are very difficult decisions to be made and someone has to make them.
Pound for pound, how can we maximise extending or improving lives for the greatest number of people.
If it was me, or one of my loved ones, no sum of money would be too great to provide any improvement in quality of life or life expectancy. That simply won’t work on a population level.
With any luck, the minister is merely the political face of a health department staffed by competent experts guided by both morals and pragmatism.
I think unless you are a parent like this, it’s impossible to know the pain you would feel seeing your child go through this and there is a little help that would ease them some and it is just beyond your grasp. Best of luck to this family.
Saw that last night, it absolutely twisted my guts, blown away by how much concern the wee fella had for other kids facing into the same challenge then falling apart because his friend now needed a wheel chair – was a difficult thing to watch. Maddening when you think about some of the pointless nonsense that public money, including that within the healthcare system is spent on.
Wish them well. Didn’t see it, can’t bring myself to sit through that twisted fu%* Nolan’s shit.
I know a family who has a son like this. It’s the most random and unlucky diseases. The mother and father needs a certain, rare gene that you don’t know you have to have a wain together to get this
If I remember this drug isn’t that effective and the cost is stupidly high. I don’t think it’s as easy to judge as it looks
The problem is, Nolan is such a shite stirrer that when he does cover issues like this I tend to not know about them, because I refuse to tune into his shows
My son has a form of MD and it’s absolutely brutal to watch his daily struggles. This drug wouldn’t help him but it would help over 20 kids here with Duchenne be able to walk and ultimately live a few more years. The worst of it is that the drug is being given free and it’s due to the capacity of nurses not being available that the Trust has refused to take it on.
My uncle had muscular dystrophy that didn’t kick in until his 30’s, was crazy watching him go from a reasonably healthy and mobile person to a shell of a man in an electric wheelchair. Having to see your child face that must be devastating
I have becker’s md we are hopeful of the new drugs that are progressing in the states but estimated cost is around 85k usd per year to be on. NHS affordability is usually 40k max.
People will say these costs are because of the trials and production of the drug, but I’m sceptical about that and I don’t trust drugs companies. There holding back of gene therapy is another thing which could help us.
Unfortunately I’m probably too old and my brother but hopeful for the younger generation. I’ve got to 40 not needing a wheelchair and still able to walk 100 yards even jump on an electric bike. My heart is healthy so everyday is a blessing, when u have you’re health.
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