How do the new antibody drugs for Alzheimer's disease work?

– What are the medicines?
Donanemab and lecanemab are targeted antibody drugs that slow down the early stages of Alzheimer's.
They represent a huge step forward in research because they target a known cause of the disease, rather than just treating the symptoms.
Both drugs bind to amyloid, a protein which builds up in the brains of people living with Alzheimer's disease.
By binding to amyloid, the drugs are designed to help clear the build-up and slow down cognitive decline.
– How effective are they?
Donanemab has been shown in clinical trials to slow the rate at which memory and thinking get worse by more than 20%.
Evidence suggests that people get the most benefit if they are given the treatment earlier in the disease.
Results also suggest the drug leads to a 40% slowing in the decline of everyday activities such as driving, enjoying hobbies and managing money.
Lecanemab has also been shown to successfully remove protein build-up from the brains of people living with early Alzheimer's disease.
For people taking lecanemab, this meant the decline in their thinking and memory skills was slowed down by 27%.
It also slowed down the decline in quality of life by up to 56%.
– How are the drugs given?
Donanemab, developed by the pharmaceutical company Lilly, is given to patients via an intravenous drip once every four weeks.
Lecanemab, developed by Eisai, is also given this way but fortnightly.
– Are there any side-effects?
Side-effects of the drugs can be serious and people undergo monitoring to check for them.
In one clinical trial published in the Journal of the American Medical Association (JAMA) in 2023, 24% of people receiving donanemab had side-effects including brain swelling and infusion-related reactions.
Four people died during the trial, with their deaths thought to be related to the drug's side-effects.
Lecanemab resulted in infusion-related reactions in around 26% of people on the trial and followed up, while 14% suffered amyloid-related imaging abnormalities causing brain swelling. Others suffered minor bleeds picked up on scans.
Around one in 10 people suffered headaches, according to updated results published in May 2024.
Overall, four deaths during the follow-up period were thought to be due to treatment.
– How much do the drugs cost?
NHS England published a briefing paper last year suggesting the cost of bringing the drugs to the health service could be £500 million to £1 billion per year.
Around 50%-60% of the total estimated cost relates to the drug price, with remaining cash spent on patient assessment, diagnosis and administering the treatment.
– How many people in England might the drugs have worked for?
NHS England estimated between 50,000 and 280,000 patients could be eligible for the new treatments if they were approved for the NHS.
To get the drugs, patients need a baseline MRI scan and then either a PET-CT scan or lumbar puncture to confirm Alzheimer's.
It is possible that blood tests will be available in the future to diagnose the disease, so NHS England did warn there should be caution about driving a 'massive expansion' in other diagnostics which could become redundant in the longer term.
-What do scientists think?
Scientists and doctors have been divided on whether the drugs represent a real clinical benefit that is noticeable in patients day-to-day.
Some argue the drugs represent a huge advance and people should be given the chance to try them.
But others say the benefits are too small.
Jennifer Keen, associate director of evidence, policy and influencing at the Alzheimer's Society, has said: 'we remain at an important and exciting moment', adding: 'There are currently 182 active clinical trials for Alzheimer's disease… We are on the cusp of major scientific breakthroughs beginning to improve the outlook for those with the disease.'
Professor Rob Howard, from University College London, said: 'Nobody should be surprised that Nice have confirmed their earlier view that the new Alzheimer's disease treatments would not be cost-effective if used within the NHS.
'Well-conducted clinical trials demonstrated that the actual size of benefits experienced by patients were too small to be noticeable, treatment carries risks of side-effects, and the annual cost of the drugs and safety monitoring required would have been close to the cost of a nurse's salary for each treated patient. We need better treatments that can make an appreciable difference to the lives of people with dementia and these can only come from further research and study.'

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Scottish Sun

5 hours ago

• Scottish Sun

Doctors said my baby boy had colic – now he lives with a lifelong seizure disorder and too many brain tumours to count

Thomas, now 13, has daily seizures - sometimes lasting up to three hours at a time - and uses a wheelchair DEVASTATING IMPACT Doctors said my baby boy had colic – now he lives with a lifelong seizure disorder and too many brain tumours to count Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) WHEN five-month-old Thomas Ward began screaming inconsolably on Valentine's Day in 2012, doctors told his mum Philippa that he likely had colic and might be teething. Nine days later, 'the bottom fell out' of Philippa's world when her son was diagnosed with a genetic disorder that causes tumours to form on numerous organs, including the brain. Sign up for Scottish Sun newsletter Sign up 6 Thomas has a genetic disorder which causes tumours to grow on his brain 6 Doctors initially told his mum Philippa that he likely had colic or was teething Thomas is now 13 and has "more tumours than doctors can count". His devastating condition impacts nearly every aspect of his life, causing developmental delays, terrifying three-hour seizures, and the need for a wheelchair. Here, Philippa, 47, a communications professional from York, tells their story… 'YOU can't possibly think Thomas is having seizures, can you?' I will never forget the response from the out-of-hours doctor when I took my then-five-month-old son to the hospital one weekend in February 2012 after he began behaving unusually, crying incessantly and making strange, jerky movements. We were dismissed and told it was likely a simple case of colic - when a baby cries a lot but there is no obvious cause - or that he might be teething. Unhappy with this outcome, and as the symptoms continued, a few days later I took Thomas to see our local GP. She agreed he was behaving unusually and wrote to the paediatrician at the local hospital. There was no indication that Thomas had a medical problem that needed to be urgently addressed, but my instincts told me otherwise. The following day, I packed a bag, took my older son Ben to nursery and walked to A&E with Thomas. Mum shares red-flag warning sign on her baby's head that turned out to be meningitis - triggering 15 seizures As soon as the doctor saw him, he diagnosed Thomas with infantile spasms - a rare and damaging form of epilepsy. He then revealed my wonderful little boy might have tuberous sclerosis complex (TSC), but he would have to be transferred to a larger hospital for an MRI scan to confirm the diagnosis. It was a terrifying time. February 29 is recognised around the world as Rare Disease Day, and it also happens to be the day Thomas was officially diagnosed with TSC, which causes tumours to form on the eyes, heart, kidneys, skin, lungs and brain. My legs gave way when we found out. It felt as though the bottom had fallen out of my world. My husband David and I learned that our son had numerous tumours on his brain and that they could cause cognitive impairment, developmental delays, behavioural problems, autism spectrum disorder, and seizures, which often cannot be adequately controlled using standard medications. We were also told that there are no approved therapies that address the root cause of TSC, so our only care options for Thomas were various therapies, symptom-based medications and possibly surgery. The days that followed were a blur. 6 Philippa, from York, says her son's condition affects their lives every single day 6 Thomas now has 'too many tumours on his brain to count' Despite an estimated one million people living with it worldwide, TSC is classified as a rare disease. If Thomas hadn't been diagnosed with it, I'd probably never have heard of it myself. Thomas underwent a few more tests before being discharged from hospital. As we were leaving, the neurologist handed us a leaflet from the Tuberous Sclerosis Association (TSA) - the UK charity dedicated to helping families affected by TSC. It felt like a strange consolation prize after receiving such a massive, life-changing diagnosis, but it became a lifeline, signposting to many of the resources and support available to us. We also joined a newly-formed Facebook group for other parents of children with TSC, and through that met some people who have gone on to become friends. But TSC continues to affect us every single day. There is nothing more heartbreaking than hearing a toddler shout: 'Seizure, seizure!' Philippa Ward Thomas is now 13, and like many people with TSC, he experiences seizures most days. At one point, Thomas was having up to eight seizures a day. Today, he typically still has at least one, usually right after waking up. They can last up to three hours at a time. He is not able to verbally communicate and has delayed motor skills. He often uses a wheelchair for outings to ensure his safety. Thomas requires regular medical scans and monitoring to track his tumours - there are now too many on his brain to count. He has been on numerous anti-epileptic medications, but none have fully relieved him from the exhausting seizures. TSC has put our entire family on a rollercoaster ride. As parents, there has been so much to learn about having a child with complex medical and developmental needs. FAMILY IMPACT It is especially difficult for us to witness the effect on our elder son, Ben. By age three, he could recognise a seizure and learned to alert us if Thomas was having one. There is nothing more heartbreaking than hearing a toddler shout: 'Seizure, seizure!' Ben, now 15, is very aware of his brother's needs. He understands the importance of being quiet in the evenings so Thomas can sleep. There are many activities we can't do as a family due to safety and accessibility issues. As a young carer, Carers UK provides him with support and resources when needed. 6 The now-13-year-old has seizures every day, sometimes lasting three hours at a time 6 He is a 'lovely young man with a vibrant personality', his mum says Despite the challenges Thomas has faced throughout his life, he remains a lovely young man with a vibrant personality and clear passions. He is a remarkable problem solver and even though he cannot speak, he is able to communicate very effectively when he wants something. He's a gentle and affectionate soul and a joy to be around. Thomas' favourite foods are chips, toast and avocado - he also loves ketchup and mayonnaise. He enjoys going on train rides, car journeys, watching YouTube videos and listening to music. His favourite person in the world is his big brother. One of the most important things we've learned since Thomas' diagnosis is the importance of community, especially one that understands your unique circumstances. What is tuberous sclerosis complex? ABOUT one million people worldwide are living with tuberous sclerosis complex, and up to 11,000 are diagnosed in the UK. It causes non-cancerous tumours to grow on the brain, as well as the eyes, heart, skin, kidneys and lungs. These tumours, which impact the central nervous system, can result in cognitive impairment, developmental delays, behavioural problems, autism, and seizures, which often can't be controlled by standard medicines. The condition can also cause skin abnormalities (such as patches of light-coloured or thickened skin, or red acne-like spots on the face), breathing difficulties, hyperactivity, kidney issues and a build-up of fluid on the brain. TSC is present from birth, although it may not cause obvious problems immediately. It is caused by changes in either the TSC1 or TSC2 gene, which are involved in regulating cell growth. There is no cure, but medicine, surgery and educational support can help. Many people with TSC will have a normal lifespan, although a number of life-threatening complications can develop. These include a loss of kidney function, a serious lung infection called bronchopneumonia and a severe type of epileptic seizure called status epilepticus. Patients may also have an increased risk of developing certain types of cancer, such as kidney cancer, but this is rare. Source: NHS Families impacted by serious conditions, especially rare diseases, often find themselves feeling isolated and alone in the weeks and months following a diagnosis. We are hugely fortunate to have our own family close by, and they are a great support to us, as is the wider TSC community around the UK and beyond. Since Thomas' diagnosis, I have done everything in my power to advocate for TSC awareness. I took part in the Great North Run to raise money for the TSA, have spoken at conferences and awareness events, shared our family's story with my workplace, and advocated for the TSC community within the NHS. There are a number of messages that I hope people take away from our family's story. Firstly, research for rare diseases like TSC is critical. While only between 3,700 and 11,000 people in the UK are diagnosed with TSC, each of these diagnoses impacts everyone in the patient's life. 'On constant alert' Having a treatment for TSC would be amazing. Thomas' frequent seizures require everyone in our house to be on constant alert. It's not easy, but Thomas is a wonderful young man, and he makes it all worthwhile. We remain hopeful that there will one day be a treatment that can improve Thomas' quality of life - and ours. I also want to remind parents of children with TSC, or any rare disease, of the importance of living in the present. When your child is diagnosed with a condition like TSC, it's understandable to ask: Why does my child have this disease? What will our future look like? We immediately begin grieving the child we thought we would have. I still don't fully understand why Thomas has TSC, but David and I are able to find tremendous joy in our lives with our son every day. The best things we can do are keep him safe, meet him where he is, help him enjoy life, and love every part of who he is. I look forward to the day when Thomas and others with TSC can access safe and effective treatment options. Until then, I am committed to making the world more inclusive and understanding.

Daily Mirror

12 hours ago

• Daily Mirror

Parents worried over dreaded 8-words are saved from 'apocalyptic life'

Simon and Helen's daughter Ruby-Mae has severe complex needs. They say without Noah's Ark Children's Hospice, which faces rising costs, that life would be 'apocalyptic'. In 2023, Simon Morley and his partner Helen Bolger heard the words no parent wants to hear. "It was a scary moment when one of Ruby's epilepsy consultants told us, 'your daughter would benefit from the children's hospice'," Simon, 46, says. "But from the moment we walked through that door at Noah's Ark, it was such positivity and professionalism – it was an amazing set-up. We are part of the furniture now." ‌ Simon and Helen's seven-year-old daughter Ruby-Mae was diagnosed with Rett syndrome, a rare genetic neurological and developmental disorder, at the age of two-and-a-half. She has severe complex needs, uses a wheelchair and needs an eye-gaze device to communicate, as she is non-verbal. For her family, life would now be unthinkable without the hospice. ‌ "Boy, has this hospice changed all our lives," Simon, who has put his micro-brewery business on pause to become Ruby's primary carer. "Noah's Ark is like the oxygen mask on a plane, it helps us to then help Ruby. It is wrap-around care for the whole family. Ruby absolutely loves it. Without The Ark being there, her life would be so diminished, she would not be the happy girl she is. Our lives would be apocalyptic without Noah's Ark." Noah's Ark Children's Hospice has been caring for children since 2006 but this year found itself facing severe financial challenges as an unintended consequence of National Insurance rises introduced by the Treasury. There are over 50 children's hospices and 200 adult hospices in the UK, providing palliative care and end-of-life support to over 300,000 people a year. "The NI increase is expected to cost Noah's Ark approximately £100,000 per year" says CEO, Sophie Andrews OBE. "Despite this, we are committed to continuing our care for children with life-limiting and life-threatening conditions." Noah's Ark Children's Hospice says that no services are being immediately impacted. "However, this unbudgeted cost places additional strain on our ability to grow and scale our services to reach more babies, children, and young people, and their families." In 2024/25 it cost £7.1million to run the hospice – which provides paediatric palliative care via specialist nurses and carers, creative therapies, a specialist play team, and a Holiday Lodge in Mersea Island, Essex – services which already rely heavily on voluntary income. Katie and Tom Morsbach's daughter Leia is six-years-old. A big sister to brothers Robin and Dylan, Leia has mitochondrial disease and severe epilepsy. Katie and Tom are opera singers. Tom donated one of his kidneys to Leia. ‌ In 2019, the Great Ormond Street Palliative Care Team referred the family to Noah's Ark Children's Hospice. "The MRI came back at GOSH, and it was pretty bad." Katie, 37, says. "The palliative care team was in the room with us pretty much straight away, and we were handed leaflets for the hospice. It's a grieving process. You have all these hopes and dreams for your children and in one fell swoop it goes out of the window. "Leia is amazing, she's always smiling, she loves life. She has been through a lot – she's had dozens of operations and spent months at a time in hospital. She has taught us to value things in life and to make the most of the present day. We were told she had just months to live but she's beaten all expectations. ‌ "In the beginning we felt isolated, it was just awful, I couldn't even talk to my best friend or family because they didn't understand. My issues were different to other first-time mums, so chatting to parents at the hospice is a relief, it's good for your mental health. Sometimes you feel like you're going crazy, but you're not, you're just dealing with things that are really difficult. We have a hospice family link worker, who I can call up for a chat." Katie, who runs a singing and drama school, adds: "When we first heard the word, 'hospice', it sounded horrible, but when Leia attended her first music therapy session, it felt so positive – it isn't what I imagined a hospice to be. Noah's Ark supports my whole family. It is not a luxury, the hospice is a lifeline, they've helped us in good and difficult times. I think people are shocked when they hear it costs something like £18k a day to run, but if you think about the breadth of services they run, not just at the hospice, but in homes too. ‌ "I've made lots of friends, we attend mum's evening, dad night's out, my boys have made friends with other siblings. If I'm totally honest, Noah's Ark is the most important place with the most important people for us. We moved house to be closer. They give us the opportunity to create amazing memories. I've been able to leave Leia there, when I gave birth to the boys, because they can provide the specialist care Leia needs. A good few times a year, we use their respite service." Ruby's dad Simon says he and his partner Helen, 44, a commissioner for health and social care services in London, can't imagine life without Noah's Ark Children's Hospice. "Due to Ruby's severe complex needs, we're really limited on what we can do," he says. "So, we spend a lot of time here, she absolutely loves it. "They have an amazing playground that allows you to wheel the wheelchairs onto the swing, they host events, there is a play team and soft play. One of Ruby's highlights was playing on the trampoline with an Arsenal player, and she's played a bit of football with Tottenham Hotspur's women's team. Noah's Ark has a huge bank of great volunteers who come into the home, it allows me to wash up, put the laundry on and cook. The only time we feel safe leaving Ruby is with Noah's Ark or at school." ‌ A government spokesperson said: "The government recognises the incredible work that children and young people's hospices do across the country. We are investing £100 million to improve hospices' facilities and a further £26 million specifically for children's hospices this year, the biggest investment in hospices in a generation. We are also working to make sure the palliative and end of life care sector is sustainable in the long term. The decision to increase employer National Insurance contributions allowed us to increase investment in health and care by £26 billion this year." Helen says the hospice is invaluable. "We use the respite service, Ruby loves it, and for us that two-day weekend is so valuable, it allows us to be us and not carers. We spent 24 hours just sleeping and recovering, we can enjoy a meal out or the cinema and feel normal. Without the hospice we would be a wreck, and miserable." She adds: "Ruby is such a happy, sociable little girl, who loves joking around. Her care is exhausting, there is no let-up, but her smile makes it all worth-while. Before Noah's Ark, all we could see was a negative future. Now we're happy again, we smile."

Telegraph

20 hours ago

• Telegraph

Labour's plan for the NHS: more money plus vital reform

The commitments that the Government made to our NHS in the Spending Review were made in full recognition of the scale of the challenge we inherited and the bold reforms we're already implementing. While it is correct that NHS productivity has yet to return to pre-pandemic levels, it is wrong to imply that our response has been to throw more money at the problem, without an equal focus on productivity. Let's be clear: after 14 years of mismanagement, we found an NHS in crisis. Not just underfunded, but fundamentally broken in its structures and operations. The waiting list stood at 7.6 million people in September 2024. 10 per cent of patients were waiting more than 12 hours in A&E. Public satisfaction had dropped to record lows. This crisis demands not just investment, but radical reform. That's precisely what we're delivering. Take our decision to abolish NHS England. This isn't an ideological choice – it's a practical one that will cut duplication, remove unnecessary bureaucracy, and crucially, redirect hundreds of millions of pounds straight to frontline services. The bloated administrative structure created under the previous government hasn't delivered better care – it's created waste, confusion, and ultimately contributed to worse outcomes for patients. We are also tackling the scandalous spending on agency staff. Under the last government, one trust paid an agency £5,100 for a shift by a single doctor in 2022/23. We've cut almost £1 billion in agency spending and our ambition is to eliminate agency use entirely in the coming years. Those billions will be reinvested in permanent staff who provide better continuity of care. We've upgraded the NHS App so that it now sends appointment reminders and test results digitally instead of by post, saving £200 million on stamps, envelopes, and printing. We found an NHS drowning in targets – many contradictory, some counterproductive. We've halved the number of targets set for NHS trusts so that they can focus on what matters to patients: waiting times for operations, ambulances, A&E attendance, rebuilding general practice and dentistry, and improving mental health services. As a result, waiting lists are at a two-year low – but we know they need to fall further. Our Plan for Change outlines how 92 per cent of elective patients should wait less than 18 weeks. We're laser-focused on that goal. Similarly, we've halved the targets that GPs are measured on. The previous government even introduced a target measuring GPs' wellbeing, while simultaneously overwhelming them with bureaucracy. We're freeing doctors to focus on patients by bringing back the family doctor model and ending the 8am phone scramble. These are precisely the productivity measures which are needed by our NHS and by Britain. Last week's Spending Review delivered a £29 billion real terms increase for the healthcare system to 2029. But let's be clear – a lot of this money is linked to reform. Every penny we invest comes with expectations of reform and improved outcomes. We're cutting waste, streamlining bureaucracy, and empowering frontline staff to deliver better care. That's why we're developing a 10-Year Health Plan for publication in the coming weeks, built around three fundamental shifts: from hospital to community care, from analogue to digital systems, and from treatment to prevention. The problems in our NHS didn't develop overnight, and they won't be solved overnight either. But unlike our predecessors, we're not afraid of making difficult decisions and driving through the reforms our public services desperately need. Public service productivity does matter – that's why we're reforming the NHS to deliver better care at better value for taxpayers. Our plan combines investment with genuine radical change. After 14 years of decline, that's what real change looks like.