Family will take NHS to court over refusal to pay for drug that could save life of Abi, 13

Yogi Amin, a Sheffield-based partner for law firm Irwin Mitchell, has taken on the case of 13-year-old Abi Longfellow who suffers from a one-in-a-million kidney disease but who has been denied the drug eculizumab after a policy review by NHS England.

It comes as Abi, who has a condition called Dense Deposit Disease which stops the kidneys from filtering waste from the blood, bravely prepares to undergo a kidney transplant to try to ease her condition.

Eculizumab, a potentially-life-saving drug which costs £137,000-a-year per patient, would have helped keep her new organ healthy afterwards, but she will go without after a decision earlier this month by NHS England that the drug was “not currently affordable”.

Health bosses ruled it cannot be routinely commissioned for the kind of post-transplant treatment Abi may need as they ranked the drug among those with the “lowest cost/benefit priority”.

Mr Amin has now stepped in and he has enjoyed success in similar circumstances in the past, having acted on behalf of a cancer sufferer in a groundbreaking appeal against a refusal by an NHS trust to fund her treatment with the drug Herceptin.

Abi’s parents Andy and Jo Longfellow have not given up on the NHS reviewing its position.

Mr Longfellow said: “We just want the NHS to do the correct thing. All the time over the last 15 months we have been fighting a campaign for Abi and we have been let down so many times.

“We are in a position now where Abi needs to have a transplant. She has made a really big step and we just have to go for it.

“For a 13-year-old to do that, and for any parents to have gone through what we have... it’s unbelievable.”

A fundraising campaign is underway to cover the cost of the drug for Abi and so far almost £30,000 has been raised. For more details visit @HelpAbiLongfellow on Facebook.