> Her deeply religious family have spent their entire life savings on her care and has complained that a “transparency order” requested by the hospital barred their ability to give details on the case to help raise public funds.

This is the most vile part of the British legal system - how it casually gags those involved from talking about it.

Edit: Otherwise, I would highlight master_crab's comment [1] - it's not 100% clear what "denied" means from this article. The BBC has more information [2] - it seems there may be a treatment available some time in the future in Canada, and the patient wants to stay on life-sustaining care in the hopes she survives long enough to get it, and the NHS/hospital is denying coverage for said care. "Triage" is disturbingly absent from both articles - it seems the hospital is making the perverse argument that this is in her best interest, and not a simple lack of resources.

While we don't have all the details, it is the hospital-requested "transparency order" that is to blame for this (the BBC article omits it, but Fox reported it [3]), we should apply the opposite of the benefit of the doubt - assume the information we've been legally barred from having is maximally incriminating.

[1] https://news.ycombinator.com/item?id=37385072

[2] https://www.bbc.com/news/health-66673511

[3] https://www.foxnews.com/media/uk-court-rules-teen-rare-disor...

This link provides a tiny bit more info about her possible treatment as a "experimental nucleoside treatment", so this is going to involve zinc.

Another question I have not see asked is why isnt a kidney transplant an option?

This might be linked to the condition, but not knowing what is up with her makes it difficult to comment, plus the courts et al have already "anonymised" her as ST, so I dont see why the condition should be hidden unless this is a courts way of accepting there actually isnt any anonymity.

Either way without knowing her condition, how can the public even know if she is getting the right treatment from the NHS. A mitochondria disease is like saying a respiratory condition.

We could fix this by making it a human right to have access to any healthcare you can afford. That would include the ability to import, buy, own, and use anything considered healthcare (including prescriptions, durable medical equipment, consumables, and training to use it) in any of the world's 20 largest nations.

This would end the war on drugs as well.

If I could import Novopen 6 insulin pens from overseas, it would change my wife's life. She is disabled after strokes and can not remember when she gave herself insulin. She also can not write it down. Insulin pens that tracked the times and amounts and kinds of insulin would be amazing. Novo Nordisk refuses to sell them in the USA.

Access to generic drugs from overseas would save many American lives, but greed prevents them from being available here.

Not greed - over regulation. There is money to be made on selling generics - it's that none of the entrenched providers have much incentive to do so and barriers for new companies to form and get established are ridiculously high, further disincentivizing new players from entering the market.

The FDA has been smacked down pretty hard in a few recent court decisions for overstepping their bounds; maybe we'll see more people start to enter the fray and push back against the entrenched establishment.

It’s not clear if she is being supported by NHS or fully private insurance.

The UK does exercise triage on long term cases. The flip side is no country can afford to maintain every patient with a terminal condition indefinitely and doctors are allowed to exercise judgement.

According to the article, this is not simply a matter of cost, but of actively preventing her travelling to Canada for an experimental treatment. There is still probably a cost element involved in preparing her for travel, but no open-ended commitment to funding ICU care.

it’s the NHS: https://www.bbc.co.uk/news/health-66673511

of course they implement triage. but if the person has enough money they can go private.

I've never heard "traige" used with such negative connotations! FWIW, the term used by the NHS is "QALYS", or "Quality-adjusted life year". Yes, these calculations are made at all levels of health care.

UK has three separate legal systems -- England & Wales, Scotland and Northern Ireland. This is case is in England & Wales and only reflects the legal position there

Well, this is absolutely crazy... I hope she and her family manage to fight this decision somehow. I get that she's seriously ill, but denying her the option to live for even a day longer is absolutely insane and should be illegal.

Kind of, sometimes, but not always. On the other side of this is the "daughter from California" scenario https://en.wikipedia.org/wiki/Daughter_from_California_syndr... which you also don't want to end up in. There has to be some threshold for the doctors to say "I get what you're trying to achieve but the choice is to die today or in a few days while medicated like crazy with tubes everywhere because you they can't breathe/eat/move".

Well, that's the downside of publicly funded healthcare: government pays for your treatment, so government gets to decide if you are worth the expense. Which of course is completely fucked up.

But that's not what's happening - they're not saying "we can't afford to keep her alive" - they're saying "she's incapable of making her own medical decisions because she's not listening to her doctor's advice (which is to die)".

And with privately funded healthcare, there may be no treatment at all. That's even more fucked up.

Well, there's always a treatment if you have money to pay for it. And if you don't you still have options like various charities, crowdfunding, etc. That's still a better scenario than the court ruling that the best thing for you is to die.

Private healthcare is available in the UK (or in this case in Canada). It appears that she is being actively prevented from using it.

GoFundMe as a form of accessing healthcare isn't great.

Well then they have that option in addition to state healthcare, so what on earth are you talking about?

that person can still go private. no one will deny her that right.

but state funded healthcare makes sure even the poorest get some form of care. and yes, they will triage.

How can she? The judge just declared her incompetent to make her own medical decisions.

the trial was about the NHS. they are free to use a different provider.