A “life-changing” new treatment for people living with sickle cell disease is to be made available on the NHS.
Around 4,000 people living with the potentially fatal blood disorder could see their lives transformed by the drug Voxelotor.
Hazel Attua, 33, has been taking the medication for nearly two years. The former finance worker said the chronic pain forced her to quit her career.
She said: “One of the most significant changes I’ve experienced is in my energy levels. Previously, the exhaustion from sickle cell made it challenging to function, impacting my ability to work and enjoy time with loved ones. I wasn’t living the life of a 20-something by any means.
“Since starting Voxelotor, my energy has soared, making a massive change to my daily routine. This has not only improved my physical well-being but also my mental health.”
Sickle cell disorder causes red blood cells to take on a “sickle” shape, break and die early, which vastly reduces the amount of oxygen they can carry.
It leaves those affected with chronic anaemia and episodes of crippling pain, called crises, which can be life-threatening and frequently require hospital care.
Image: Sickle cells and normal red blood cells. Pic: Dr Graham Beards/CCv3
The inherited condition also gives rise to a range of life-altering complications such as stroke, chronic fatigue, delayed growth, infections, progressive tissue and organ damage.
The drug works by helping haemoglobin – a protein in red blood cells – hold on to more oxygen and prevent red blood cells from becoming misshapen.
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It was initially rejected for widespread NHS use but the National Institute for Health and Care Excellence (NICE) has approved the drug in final draft guidance after a reduction in its price.
New treatment will help bridge widening health inequalities
Sickle cell disease disproportionately affects Black African and Caribbean populations: a community that suffers discrimination in access to health care.
And for people from this community who live with the inherited blood disorder, that health inequality is compounded.
The disease needs constant medical attention – a sickle cell crisis causes crippling pain and requires emergency intervention.
But most A&E staff will not have knowledge of the condition.
One senior researcher found that the same clinical staff can make dangerous assumptions about the need to access pain-relieving drugs based on race.
Joni Jabbal from the King’s Fund warned: “Getting good care for sickle cell disorder is a postcode lottery.”
This substandard care can lead patients to stop accessing healthcare and fall out of the system.
Despite being the fastest-growing genetic condition in the UK, there has been only one licensed treatment for the disorder over the past twenty years.
In contrast, 511 drugs have been approved for cystic fibrosis since 1988.
John James, chief executive of the Sickle Cell Society, said: “Today’s approval by NICE marks a significant milestone in sickle cell care, addressing decades of limited access to disease-modifying treatments.
“We look forward to this being the first in a series of new treatment options for people living with sickle cell disorder.”
Helen Knight, director of medicines evaluation at NICE, said: “This is great news for people with sickle cell disease, particularly given the health inequalities experienced by people with the condition.”
The drug, which is taken as a once-a-day tablet, will be available straight away.
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Amanda Pritchard, chief executive of NHS England, said the service had “worked hard to make this life-changing treatment available”.
She added: “Sickle cell disease can have a huge impact on people’s lives, and this is one of the biggest breakthroughs in treatment in recent decades, so I know how much this announcement will mean for thousands of people across the country.”
Around 17,500 people are living with sickle cell disease in the UK and the condition is more common among people with an African or Caribbean family background. Of those 17,500, about 4,000 are believed to be eligible for the new treatment.
Voxelotor is also known as Oxbryta and is made by Pfizer.
Prince Harry has visited war victims in Ukraine as part of his work with wounded veterans, a spokesperson has said.
The Duke of Sussex was in central London this week for a Court of Appeal hearing over his security arrangements in the UK.
The visit on Thursday to Lviv in western Ukraine, which has frequently been targeted with Russian missiles, was not announced until after he was out of the country.
Image: Prince Harry visits Superhumans Center in Lviv. Pic: Superhumans Center
Harry, who served 10 years in the British Army, visited the Superhumans Center, an orthopaedic clinic in Lviv that treats and rehabilitates wounded military personnel and civilians.
The prince, 40, was accompanied by a contingent from his Invictus Games Foundation, including four veterans who have been through similar rehabilitation experiences.
Image: Harry at the rehabilitation centre in Lviv on Thursday. Pic: Superhumans Center
A spokesperson for the Duke of Sussex said Harry had been invited by the centre’s CEO, Olga Rudneva, a year ago, and at the Invictus Games Vancouver Whistler 2025, which took place in February.
Harry travelled to the centre, which offers prosthetics, reconstructive surgery and psychological help free of charge, to see first-hand the support they provide at an active time of war.
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Image: Prince Harry made an unannounced visit to Ukraine. Pic: Superhumans Center
The duke, who served two tours in Afghanistan, met patients and medical professionals while touring the centre, the spokesperson said.
During his trip to Ukraine, he also met members of the Ukrainian Invictus community, as well as Ukraine’s minister of veterans affairs, Natalia Kalmykova.
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Image: The Duke of Sussex was in London earlier this week.
Pic: PA
Helping wounded soldiers has been one of Harry’s most prominent causes, as he founded the Invictus Games in 2014 to offer wounded veterans the challenge of competing in sports events similar to the Paralympics.
Harry is the second member of the royal family to visit Ukraine since Russia launched a full-scale invasion of its smaller neighbour in February 2022.
His aunt, Sophie, the Duchess of Edinburgh, made an unannounced visit to Ukraine’s capital of Kyiv last year.
The government will fund any further local inquiries into the grooming gangs scandal that are deemed necessary, Sir Keir Starmer has said.
However, the prime minister said it is his “strong belief” that the focus must be on implementing recommendations from the Alexis Jay national review before more investigations go ahead.
It follows a row over whether Labour is still committed to the five local inquiries it promised in January, after safeguarding minister Jess Phillips failed to provide an update on them in a statement to parliament hours before it closed for recess on Tuesday.
Image: Sir Keir Starmer joins police officers on patrol in Cambridgeshire. Pic: PA
Instead, Ms Phillips told MPs that local authorities will be able to access a £5m fund to support locally-led work on grooming gangs.
On Thursday morning, Home Secretary Yvette Cooper insisted the “victim-centred, locally-led inquiries” will still go ahead, while a Home Office source told Sky News more could take place in addition to the five.
Speaking to Sky News’ Rob Powell later on Thursday, Sir Keir confirmed that there could be more inquiries than those five but said the government must also “get on and implement the recommendations we’ve already got”.
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The prime minister said: “Of course, if there’s further local inquiries that are needed then we will put some funding behind that, and they should happen.
“But I don’t think that simply saying we need more inquiries when we haven’t even acted on the ones that we’ve had is necessarily the only way forward.”
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Yvette Cooper speaks to Sky News
Ms Phillips’s earlier comments led to accusations that the government was diluting the importance of the local inquiries by giving councils choice over how to use the funds.
Sky News understands she was due to host a briefing with MPs this afternoon at 5pm – the second she had held in 24 hours – in an attempt to calm concern amongst her colleagues.
Review recommendations ‘sat on a shelf’
Sir Keir insisted he is not watering down his commitment for the five local enquiries, but said the Jay recommendations were “sitting on a shelf under the last government” and he is “equally committed” to them.
He added: “At the most important level, if there is evidence of grooming that is coming to light now, we need a criminal investigation. I want the police investigation because I want perpetrators in the dock and I want justice delivered.”
In October 2022, Professor Alexis Jay finished a seven-year national inquiry into the many ways children in England and Wales had been sexually abused, including grooming gangs.
Girls as young as 11were groomed and raped across a number of towns and cities in England over a decade ago.
Prof Jay made 20 recommendations which haven’t been implemented yet, with Sir Keir saying on Thursday he will bring 17 of them forward.
However, the Tories and Reform UK want the government to fund a new national inquiry specifically into grooming gangs, demands for which first started last year after interventions by tech billionaire Elon Musk on his social media platform X.
Image: Elon Musk has been critical of Labour’s response to grooming gangs and has called for a national inquiry. Pic: Reuters
‘Fuelling confusion’
Reform leader Nigel Farage said the statement made by Ms Phillips “was one of the most cowardly things I have ever seen” as he repeated calls for a fresh inquiry.
Robert Jenrick, the shadow justice secretary, also told Sky News that ministers were “fuelling confusion” and that the “mess.. could have been avoided if the government backed a full national inquiry – not this piecemeal alternative”.
Tory leader Kemi Badenoch said the government needed to look at “state failings” and she would try and force a fresh vote on holding another national inquiry, which MPs voted down in January.
‘Political mess’
As well as facing criticism from the Opposition, there are signs of a backlash within Labour over how the issue has been handled.
Labour MPs angry with government decision grooming gangs
With about an hour until the House of Commons rose for Easter recess, the government announced it was taking a more “flexible” approach to the local grooming gang inquiries.
Safeguarding minister Jess Philips argued this was based on experience from certain affected areas, and that the government is funding new police investigations to re-open historic cases.
Speaking on Times Radio, former chair of the Equality and Human Rights Commission Sir Trevor Phillips called the move “utterly shameful” and claimed it was a political decision.
One Labour MP told Sky News: “Some people are very angry. I despair. I don’t disagree with many of our decisions but we just play to Reform – someone somewhere needs sacking.”
The government has insisted party political misinformation was fanning the flames of frustration in Labour.
The government also said it was not watering down the inquiries and was actually increasing the action being taken.
But while many Labour MPs have one eye on Reform in the rearview mirror, any accusations of being soft on grooming gangs only provides political ammunition to their adversaries.
One Labour MP told Sky News the issue had turned into a “political mess” and that they were being called “grooming sympathisers”.
On the update from Ms Phillips on Tuesday, they said it might have been the “right thing to do” but that it was “horrible politically”.
“We are all getting so much abuse. It’s just political naivety in the extreme.”
Ms Phillips later defended her decision, saying there was “far too much party political misinformation about the action that is being taken when everyone should be trying to support victims and survivors”.
“We are funding new police investigations to re-open historical cases, providing national support for locally led inquiries and action, and Louise Casey… is currently reviewing the nature, scale and ethnicity of grooming gangs offending across the country,” she said.
“We will not hesitate to go further, unlike the previous government, who showed no interest in this issue over 14 years and did nothing to progress the recommendations from the seven-year national inquiry when they had the chance.
“We will leave no stone unturned in pursuit of justice for victims and will be unrelenting in our crackdown on sick predators and perpetrators who prey on vulnerable children.”
The father of a grooming gang victim has told Sky News the government should be “ashamed” of itself over the confusion surrounding inquiries – accusing it of “messing around with survivors’ lives”.
Safeguarding minister Jess Phillips this week sparked fresh uncertainty over whether regional inquiries into grooming gangs – promised by the government in January – would go ahead.
But her comments have done little to reassure Marlon West, whose daughter Scarlett was a victim of sexual exploitation in Manchester.
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PM challenged on grooming gang inquiry timeline
Ms Phillips’s statement in parliament on Tuesday – which sparked criticism after it failed to mention the reviews – left survivors “so disappointed”, he said.
The uncertainty “makes you dizzy because you get hope and think ‘I’m getting somewhere now’ then they do a U-turn as they’ve done twice this week”, Mr West continued.
“I think they should be ashamed of themselves,” he said. “The government now are messing around with survivors’ lives and campaigners like me.”
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Govt denies ‘watering down’ grooming gang inquiries
Throughout her ordeal, Scarlett has “been let down by the local authority, by social workers, by the police force,” he said. “With the government, she’s just been let down again. That’s what’s cruel.”
Mr West added he is “really disappointed” in the government’s decision to push forward with the five regional inquiries instead of a statutory, national one.
Image: Mr West’s daughter Scarlett was a victim of sexual exploitation
He pointed out that police officers and professionals can refuse to give evidence at regional inquiries, whereas national ones can compel them to do so.
“With a statutory inquiry, it’d be more like a [legal] setting,” Mr West said. “Professionals will not be allowed to refuse interviews. They have to attend.
“It needs to [be in a] legal arena where they are compelled to give evidence.”
Image: Scarlett West
His comments came as the prime minister said the government is focussing on implementing the “hundreds” of recommendations from previous inquiries into grooming gangs.
Sir Keir Starmer said: “My strong belief is we’ve got to implement those recommendations.
“At the moment, and under the last government, they just stacked up and sat on a shelf. So they need to be implemented.”
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Both the prime minister and the home secretary have rejected claims the government’s pledge to hold “victim-centred, locally-led inquiries” is being “watered down”.
Asked by Sky News presenter Anna Jones if that was the case, Ms Cooper replied: “No, completely the opposite.
“What we’re doing is increasing the action we’re taking on this vile crime.”
Sir Keir separately said: “We put the money behind it. We’re not watering it down. We’re committed to that.
“But, I’m equally committed to implementing the recommendations that we’ve got.”