NHS refusing to prescribe a drug to save a childs life on a cost basis - petition

[Bogeyface]

www.change.org/p/nhs-england-commissioning-board-reconsider-your-decision-to-refuse-eculizimab-for-lewis-brimble?utm_source=action_alert&utm_medium=email&utm_campaign=330714&alert_id=SXBQbfjIsO_YSaZBaCU6mO4OgxxDnVRg7DS9WJ4pa2qF8GZef%2F1ZQIEaqV5Uk%2F55FhQoXhzeXNr

He is planning on using the petition as part of his appeal. I cannot see how they can justify this decision, its disgusting.

I can see exactly why they have to say no. The nhs has millions of patients, not just one. He can continue dialysis which is admittedly crap (a family member is on dialysis) whereby that money can be used for someone else where there is no other option like dialysis.

And eculizimab has NOT been found to be a 'cure' for MPGN. There are some very, very small studies that show reduction in some of the symptoms and it has been recommended for wider trial.

In my opinion, given the state of the science, what is disgusting is allowing this young boy to believe this drug will 'cure' him of a very rare and, apparently, idiopathic and therefore less treatable, disease

This is so sad. But I must agree with mintpoppet.
lf every 'last resort' drug was bought by the NHS, regardless of cost, the drugs companies would be delighted. But there would be no money left for the routine treatments that save so many lives every day.

Please don't blame the NHS and NICE people who have such an awful job to do, judging how to stretch their funds in life-or-death decisions.

The nhs do extensive risk:benefit studies on every drug.

It is likely, as pp said, the drug will not make enough of a difference to the child's health to justify the cost. It is also possible there are other, older, cheaper drugs that are just as effective, if not more so.

The nhs don't refuse drugs or treatment on a whim purely because of cost. They will pay if it going to cure or significantly improve a patients condition.

See also: people raising money for treatment in the U.S. or abroad, which seems to be the default reaction to any major diagnosis. I am willing to bet the vast majority never use any money raised for treatment.

Lots of sympathy for Lewis.

There are so many new drugs for incurable conditions that pharmaceutical companies are pushing at a cost of hundreds of thousands of pounds a year but in fact only offer very limited (or no) benefits. I can see why patients and their families are terribly upset when NICE doesn't fund these drugs... but NICE's decisions are often very understandable when one looks at the wider picture.

I really hate it when the petitions don't explain anything about either the condition or the drug. They have not even put the name of the disease.

It appears the NHS does fund this drug for some conditions so it has not rejected its use on cost alone.

It makes me think, "What else are you not telling me?"

It makes me think of the first series of Big Brother, when Craig was raising money for Joanne Harris who, 'couldn't have a heart transplant on the NHS because she had Down syndrome', when there are (or certainly were at the time) good reasons not to give a transplant to someone with DS, the main one being that it can actually shorten life due to the immunosuppressant drugs knocking out an already low immune system.

Don't get me wrong, I have no problem with people raising money and awareness, I have a problem when people only give half the story.

People think with their hearts and not logically. Sadly, we cannot afford for every drug to be trialed on every person. It's not just the NHS, some of these drugs are not accessible without huge cost to the individual in any country.

Hi all,

We are going to move this over to the Petitions topic.

Thanks!