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.
Advertisement
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for widespread NHS use but the National Institute for Health and Care Excellence (NICE) has approved the drug in final draft guidance after a reduction in its price.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.
Follow Sky News on WhatsApp
Keep up with all the latest news from the UK and around the world by following Sky News
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.
A manhunt has been launched for an accidentally released asylum seeker who was jailed for 12 months earlier this year after he sexually assaulted a 14-year-old girl and a woman in Epping.
Hadush Gerberslasie Kebatu had been staying at The Bell Hotel in the Essextown, with the incident fuelling weeks of protests at the site.
The Ethiopian national was found guilty of two counts of sexual assault, attempted sexual assault, inciting a girl to engage in sexual activity and harassment without violence earlier this month.
District judge Christopher Williams said Kebatu posed a “significant risk of reoffending” when he sentenced him to 12 months in prison in September.
Sky News understands Hadush Kebatu was being released from HMP Chelmsford as he was due to be immediately deported.
Image: Hadush Gerberslasie Kebatu was jailed for two sexual assaults in Epping. Pic: Essex Police / PA
He was released on the expectation that he would be picked up by immigration enforcement, but it is currently unclear what happened next. It is understood that the Home Office was ready to take Kebatu to an immigration removal centre.
Sky sources say the search for Kebatu is within Essex, which launched a manhunt after he was accidentally freed on Friday morning.
Kebatu’s lawyer, Molly Dyas, told Chelmsford Magistrates’ Court during his trial that it was his “firm wish” to be deported.
Under the UK Borders Act 2007, a deportation order must be made where a foreign national has been convicted of an offence and received a custodial sentence of at least 12 months.
Image: Kebatu was accidentally released from HMP Chelmsford. Pic: iStock
Deputy Prime Minister David Lammy is said to be furious and has ordered an investigation and is supporting police efforts, according to a Government source.
Mr Lammy said in a post on X that he is “appalled at the release in error”, adding: “Kebatu must be deported for his crimes, not on our streets.”
Reform UK leader Nigel Farage said: “The Epping hotel migrant sex attacker has been accidentally freed rather than deported. He is now walking the streets of Essex. Britain is broken.”
Tory leader Kemi Badenoch said Kebatu was released as a result of “the entire system collapsing under Labour”.
Chelmsford MP Marie Goldman said in a statement following the accidental release: “The police must do everything they can to ensure that this man is returned to custody immediately so that he is deported at once.
“Once the manhunt is over, there must be a full, rapid public inquiry into how this happened. This is utterly unacceptable and has potentially put my constituents in danger. I expect answers from the Prison Service.”
Image: Hadush Gerberslasie Kebatu, left, in a court sketch. Pic: Elizabeth Cook/PA
The Prison Service said in a statement that it was “urgently working with police to return an offender to custody following a release in error at HMP Chelmsford”.
“Public protection is our top priority and we have launched an investigation into this incident,” a spokesperson added.
It is understood that releases in error are incredibly rare and are taken extremely seriously by the Prison Service.
But policing and crime commentator Danny Shadow says that releases in error are actually not uncommon.
“Last year, there were 87 prisoners who were released in error. So that’s around six or so every single month. Seventy were released from error from prisons and another 17 from the courts,” the former Labour home affairs advisor told Sky News.
An officer has been removed from duties to discharge prisoners while the investigation is ongoing.
Image: Kebatu was staying at the Bell Hotel in Epping. Pic: PA
During his trial, the court heard that Kebatu had tried to kiss the teenager, put his hand on her thigh and brushed her hair after she offered him pizza.
The asylum seeker also told the girl and her friend he wanted to have a baby with them and invited them back to the hotel.
The incident happened on 7 July, about a week after he arrived in the UK on a boat.
The girl later told police she “froze” and got “really creeped out”, telling him: “No, I’m 14.”
Image: The Bell Hotel has been the site of protests over the summer. Pic: AP
Kebatu was also found guilty of sexually assaulting a woman – putting his hand on her thigh and trying to kiss her – when she tried to intervene after seeing him talking to the girl again the following day.
The incidents sparked anti-migrant protests and counter-protests outside the former Bell Hotel in Epping – as well as at hotels housing asylum seekers across the country.
This breaking news story is being updated and more details will be published shortly.
An asylum seeker has been found guilty of murdering a hotel worker at a train station in the West Midlands.
Deng Chol Majek was caught on CCTV following Rhiannon Skye Whyte from the Park Inn hotel, in Walsall, where he lived and she worked, to the nearby Bescot Stadium station.
She was stabbed in the head with a screwdriver 19 times, and 23 times in total, on 20 October last year.
Image: Deng Chol Majek. Pic: PA
Mr Majek, who is from Sudan and claims to be 19 years old, had told Wolverhampton Crown Court he was at the hotel for asylum seekers at the time the 27-year-old was attacked.
A two-week trial heard that Mr Majek had previously been reported to security at the hotel after “spookily” staring at three female staff members for prolonged periods.
Ms Skye died in hospital three days after the attack, having been found injured in a shelter on the platform by the driver and guard of a train which pulled in about five minutes later.
Image: Rhiannon Skye Whyte. Pic: Family handout/PA
Mr Majek, who is about ten inches taller than Ms Whyte, walked to the Caldmore Green area of Walsall after the attack to buy beer, and was recorded on CCTV apparently wiping blood from his trousers.
He returned to the hotel at 12.13am, changed his bloodstained flip-flops for trainers, and was seen dancing with other residents in the car park, within sight of emergency vehicles called to the station.
Asked by defence KC Gurdeep Garcha if he was at the train station when Ms Whyte was stabbed, Mr Majek replied: “No.”
He also denied being “responsible for that fatal assault” on the platform.
Image: CCTV from the reception area of the hotel alleged to show Deng Chol Majek staring at Rhiannon Whyte, left. Pic: PA
Prosecutor Michelle Heeley KC said of Mr Majek’s behaviour after the murder: “He is celebrating, his mood has changed from that prolonged scowl before the murder to dancing and joy after the murder. It is utterly callous.”
Mr Majek said he had spent time in Libya, Italy and Germany before arriving in the UK to claim asylum in July last year.
He will be sentenced at a later date.
‘She was always happy’
Rhiannon’s sister, Alex Whyte, said her sibling “always wanted to make everyone else around her happy”.
She said: “Rhiannon had such a quirky personality. You would hear her before you’d see her.
“No matter what her day had been, she always wanted to make everyone else around her happy. She always prioritised family. That was the most important thing to Rhiannon. Obviously, she has a brother and three sisters. And my mum, who was her best friend.”
She added: “Rhiannon is the second youngest. But our baby sister would always say ‘I’m your big little sister’, because Rhiannon was very soft.
“So, no matter what, we always wanted to protect her. That was our priority most of our life, because Rhiannon never saw danger – Rhiannon never understood how scary the world really could be.
“But no matter what Rhiannon was just happy, always.”
Plaid Cymru have won the by-election in the Senedd seat of Caerphilly for the first time.
The Welsh nationalist party secured 15,960 votes – and candidate Lindsay Whittle cried as the result was announced.
Mr Whittle is 72 years old and had stood as a Plaidcandidate 13 times since 1983. He will now hold the seat until the Welsh Assembly’s national elections next year.
This by-election was widely regarded as a two-horse race between Plaid Cymru and Reform UK, and the result marks a considerable blow for Nigel Farage.
His candidate Llyr Powell received 12,113 votes – denying a victory that would have strengthened claims that Reform can convert a large lead in opinion polls into election wins.
Nonetheless, the party’s performance is a marked improvement on 2021, when it received just 495 votes.
More than anything, the result is a humiliating and historic defeat for Labour, who had held Caerphilly at every Senedd election since it was created in 1999 – as well as the Westminster seat for over a century.
Its candidate Richard Tunnicliffe secured 3,713 votes and finished in third place, with Welsh Labour describing it as a “by-election in the toughest of circumstances, and in the midst of difficult headwinds nationally”.
Turnout overall stood at 50.43% – considerably higher than during the last ballot back in 2021.
Giving his acceptance speech after the result was confirmed, Mr Whittle began by paying tribute to Hefin David – who was Welsh Labour’s Member of the Senedd for Caerphilly until his death in August.
“He will be a hard act to follow,” Mr Whittle said. “I will never fill his shoes – but I promise you, I will walk the same path that he did.”
The Plaid politician described how he had been “absolutely heartened” by how many young people were involved in the by-election – and said the result sends a clear message.
He said: “Listen now Cardiff and listen Westminster – this is Caerphilly and Wales telling you we want a better deal for every corner of Wales. The big parties need to sit up and take notice.
“Wales, we are at the dawn of new leadership, we are at the dawn of a new beginning – and I look forward to playing my part for a new Wales, and in particular, for the people of the Caerphilly constituency. I thank you with all my heart.”
Mr Whittle quipped Plaid’s victory “was better than scoring the winning try for Wales in the Rugby World Cup”.
And looking ahead to the next year’s elections, he added: “[This] result shows what’s possible when people come together to back practical solutions and protect what matters most.
“We’ve beaten billionaire-backed Reform and, with the same determination, we can do it again in May 2026. Caerphilly has shown the way – now Wales must follow.”
Please use Chrome browser for a more accessible video player
0:49
How tactical voting helped Plaid Cymru
Speaking to Sky’s chief political correspondent Jon Craig just before the declaration, Plaid Cymru leader Rhun ap Iorwerth said: “There’s clearly a real significance to the result – we are seeing the disillusionment with Labour writ large. I’ve heard it on hundreds of doorsteps, we’ve seen it in opinion polls.”
He conceded there was tactical voting in this by-election – with Labour and Conservative supporters alike backing Lindsay Whittle to keep out Reform.
However, Mr ap Iorwerth added: “I’ve spoken to literally hundreds and hundreds of people who told me – time and time again – ‘I’ve been a Labour supporter all my life, and we’re backing you this time.’
“Not begrudgingly, but because they see that’s the direction we’re going in – not just in this by-election, but as a nation. I’m calling on people to get behind that positive change – not just today, but ahead of next May.”
First Minister Eluned Morgan congratulated Mr Whittle on his return to the Senedd and said: “Welsh Labour has heard the frustration on doorsteps in Caerphilly that the need to feel change in people’s lives has not been quick enough.
“We take our share of the responsibility for this result. We are listening, we are learning the lessons, and we will be come back stronger.”
The Conservatives and the Liberal Democrats were among the parties who lost their deposits.