First new treatment for sickle cell in 20 years By Adina Campbell and Philippa Roxby BBC News

Painful episodes

The drug, crizanlizumab, made by Novartis, is injected into a vein and can be taken on its own or alongside standard treatment and regular blood transfusions.

And in a trial, patients taking the crizanlizumab had a sickle-cell crisis 1.6 times a year on average, compared with nearly three times a year normally.

These painful episodes, which can require hospital treatment and lead to other health complications, are caused by by sickle-shaped red blood cells blocking the small blood vessels .

But because the trial was small and lasted only a year, it remains unknown how long the benefits last for - and that makes it difficult to judge how cost-effective crizanlizumab is.

Nevertheless, NICE, which recommends treatments in England and Wales, is recommending its use for over-16s, albeit under a special arrangement rather than routinely, on the NHS.

And additional data on the treatment will be collected through clinical trials.

The charity Sickle Cell Society said the new treatment brought "new hope" for people living with the world's most common genetic blood condition.

NHS chief executive Amanda Pritchard said: "The moment that a new drug comes that is approved to be used, our job is to make sure that we can do a deal to ensure it's affordable and get it out as quickly as possible."

'Every day is pain'

Diagnosed at birth, Sarah-Jane Nkrumah, 27, had her first crisis aged six months and has chronic pain in her joints.

"Every day is pain," she says.

"I don't remember the last time I had zero pain."

Sarah-Jane prefers to take breaks from taking painkillers - but some days cannot get out of bed.

"You just have to try and manage it," she says.

"I don't have a choice.

"It's all about having a lot of mental strength and support."

And every six weeks, she has a blood transfusion to boost her energy levels.

"I feel weak and exhausted leading up to them and refreshed and stronger afterwards," she says.

"Thanks to donors, I get a chance to live another day."