Revolutionary MND drug should be given to all who need it
Sadly, an effective treatment for this horrific disease didn't come in time for Rob. And a year on from his death, the same is still true for the vast majority of people with MND. But for the one in every 50 whose disease is caused by a particular genetic change, there is now a treatment that works. It's called tofersen, and it dramatically slows, even pauses, the progression of MND. It means that people taking it can now dare to dream and hope for many years of life.
Tofersen has already been approved in the US and the EU, and in the UK is part of the way through the NHS approval process. While we wait for a decision, the company behind it, Biogen, is giving it for free to people who need it. This is a lifeline. People with MND simply don't have time to wait.
The good news is that most people who could benefit from tofersen are now getting it. But shockingly, a small number — the MND Association estimates there are about 12 — have been told that their local NHS won't give it to them, even though the drug is free. The reason? They say they don't have the staff and bed space needed to administer it once a month.
The MND Association has asked the government to intervene. But the government says it is down to individual NHS bodies, and so it can't get involved. This means that if you happen to be in an area where the local NHS will give you the drug, you get to live. If you don't, your condition will continue to deteriorate.
There's nothing I would not have done to save my son, so for some people to know there's a treatment at long last — a free one — but not to be able to access it is just unbearable to think about. Not only is this tragic, but it's grossly unfair. It goes against the NHS Constitution's commitment to put the needs of patients before organisational boundaries.
I was deeply touched by Keir Starmer calling those who carry on the fight for a cure for MND in Rob's memory as 'the best of our country'. He's right. They are. But when I think about the best of our country, I think about compassion and a sense of fairness. I'm asking the prime minister to act today to stop other families going through what I've gone through. He can tell the NHS to give everyone who could benefit from tofersen equal access to it. He should do so.
Sign the Motor Neurone Disease Association's petition at mndassociation.org
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Glasgow Times
an hour ago
- Glasgow Times
Boots opens brand new store in Glasgow Central Station
Boots has officially opened its brand-new shop within the city centre travel hub, offering an expanded selection of health, wellness, and beauty products. The store also provides NHS Pharmacy First Scotland services. Designed to deliver an enhanced shopping experience for commuters and travellers, the new branch is open from 7am to 10pm, Monday to Saturday, and 9am to 6pm on Sundays. (Image: Supplied) READ MORE: Fashion giant announces first Glasgow store to open in Silverburn The new shop will also be providing the NHS pharmacy service operates from 9am to 7pm on Saturdays. Conveniently located next to the station's entrance, the store is easily accessible for those on the move. (Image: Supplied) Emma Collins, Store Manager at Boots Glasgow Central Station, said: 'Located in one of the country's busiest stations, we welcome thousands of people to our store each week, and we love being able to help them on their journey – whether they need to see a pharmacist, grab lunch on the go, are popping in to get blister plasters or want to pick up skincare for a pamper when they get home, we've got something for everyone. "We are delighted to open our brand-new store and can't wait to welcome even more passengers through our doors.' READ MORE: Brand-new 'free' store opens in busy Glasgow shopping centre (Image: Supplied) For those in need of last-minute travel essentials, the store stocks a wide range of products, including toiletries and everyday items from popular beauty brands such as No7, Soap & Glory, and Boots' own label. Customers can also enjoy a variety of food and drink options, with the classic Boots Meal Deal available for those seeking a quick bite before or after their journey. Boots has had a presence at Glasgow Central Station for nearly a century. Its first store opened there in 1931, marking it as the first Boots branch in a railway station in Scotland.
Daily Mail
an hour ago
- Daily Mail
Pharmacist's alarming warning about popular gym habit that could trigger deadly heart attack
A pharmacist has urged gym-goers to avoid popular pre-workout powders due to the severe damage they could do to your heart. Many supplements that claim to boost energy and exercise performance contain extremely high quantities of caffeine. This can, over time, increase blood pressure to dangerous levels and trigger heart rhythm abnormalities, according to Ireland-based drug expert, Lauren O'Reilly. In a recent video posted to her TikTok that has amassed over 82,000 views, Ms Reilly said she 'wouldn't touch' the powders. 'They contain over 300mg [of caffeine] per scoop or per serving, which is the same as having three cups of coffee all at once,' she warned. This instant hit can leave you feeling 'super anxious with jitters and heart palpitations'. Palpitations, she explained, show 'how much pressure all of that caffeine at once is putting on your heart, your vascular system, increasing blood pressure. 'Over time this can do real damage.' Experts have long warned of the dangers of high doses of caffeine, particularly for those with underlying heart rhythm problems that may be undiagnosed. Caffeine results in the release of hormones that increase heart rate and blood pressure. In some vulnerable individuals, this can lead to atrial fibrillation, a condition where the heart beats rapidly and irregularly, increasing the risk of a deadly heart attack or heart failure. The pharmacist's warning follows last year's alert from the Government's Food Standards Agency regarding the safety of caffeinated workout supplements. The body warned of the dangers of the 'extremely potent' products, after the death of a 29 year-old man who suffered a fatal cardiac arrest after miscalculating the his dose of caffeine powder. Personal trainer Thomas Mansfield died in January 2021 within hours of 'necking' a mixture that contained seven times the recommended daily dose of caffeine. Minutes after drinking the supplement mix he began 'frothing at the mouth' and 'clutching at his chest'. An inquest heard that Mr Mansfield, of Colwyn Bay, North Wales, had mistakenly taken nearly 16 times the recommended maximum dose listed on the packet. 'The dose he took was the equivalent of up to 200 cups of coffee,' said the FSA in its warning. Concerningly, they added that a survey found less than half of people look for dosage instructions on supplements. In the latest warning, pharmacist Lauren O'Reilly pointed out that the small print on products often advises 'for occasional only'. She added: 'People take these all the time and these are so so dangerous. 'And look you'll see loads of warnings there. So, yeah, these are a massive no from me.' Instead, she said eating a banana 30 minutes before your workout will leave you feeling 'plenty of pump'. The FSA recommends consuming no more than 400mg each day of caffeine, which is the equivalent to roughly four cups of coffee. In 2023, several lawsuits were launched in the US against fast food joint Panera Bread over the allegedly harmful effect of its highly caffeinated 'Charged Lemonade' drink. A 28 year-old Rhode Island woman took legal action against the chain, alleging the beverage left her with long-term heart problems. Lauren Skerritt, an athlete, drank two-and-a-half Charged Lemonades at a Panera location in Greenville, Rhode Island, in April 2022, according to the lawsuit. After drinking the lemonade, Skerritt allegedly experienced new episodes of palpitations and dizziness. Scans later showed that she was suffering atrial fibrillation. It followed the tragic death of a 21-year-old Pennsylvania college student in the US, who according to court documents, suffered a fatal cardiac arrest after consuming the lemonade—which contained 390mg of caffeine. Ms Katz suffered a serious heart rhythm condition called long QT syndrome, which causes the heart to beat irregularly (arrhythmia). She was diagnosed with the condition aged five and had managed it with medication and limiting caffeine, according to documents written by lawyers representing her parents. Dr Stuart Fischer, an internal medicine physician in New York, told that caffeine can eliminate the vital breaks in between heart beats for people with long QT syndrome. 'Patients with this condition needs a little bit longer than usual to reboot after the heart muscle has contracted.' Caffeine, he explains, speeds up the beating pattern, placing too much stress on the already stretched organ. 'If there is too much activity when the muscle needs to relax, it can be potentially fatal or at least a major medical emergency.' Dr Fischer added that just 100mg of caffeine, which is the same as a large cup of coffee, could be enough to trigger a deadly attack.
Daily Mail
an hour ago
- Daily Mail
My mum had chemotherapy to beat cancer but persuaded my sister not to do the same and now she's dead - I'll never forgive her and only have one hope for the future now
Gabriel Shemirani has claimed his mother had chemotherapy to beat cancer but persuaded his sister, who sadly passed away, not to do the same. Cambridge graduate Paloma Shemirani died in July last year aged 23 after being diagnosed with non-Hodgkin lymphoma, a form of blood cancer. Her mother, Kate Shemirani, is a notorious anti-vaxxer who was struck off the UK's nursing register in 2021 for her extreme anti-medicine views, including discouraging the use of masks and vaccines. Since Paloma's death, her two brothers Sebastian and Gabriel have claimed their sister refused conventional chemotherapy because of pressure from their mother. Gabriel appeared on Thursday's instalment of This Morning and sat down with co-hosts Cat Deeley and Ben Shephard. He revealed that 'for as long as I can remember' conspiracy theories from his parents featured in his childhood. 'Me and my brother up to the age of 13 believed the royal family were shape-shifting lizards,' he admitted. 'Especially with my mum around the age of 12, it became the medical establishment is out to kill you, they're seeking to kill you, you can't touch them, you can't have vaccines, all vaccines are dangerous, every vaccine is going to kill you,' Gabriel added. 'My mum got cancer in 2012, she got conventional diagnosis, conventional surgery, the surgery was essentially what cured her.' After her experience with cancer, Kate's conspiracies 'accelerated'. 'If you're familiar with Mel Gibson or Jess Ainscough in Apple Cider Vinegar, I think my mum saw this as her opportunity to mould herself as a wellness therapist,' Gabriel explained. Gabriel thinks his mother 'believes some' of the theories but also tried to 'use it as an opportunity'. Around 2016 and 2017, Kate began to try to build an online following but she didn't take off until the pandemic. 'My sister started getting pains in her chest and her back around October 2023 and she was estranged from my mum at this point,' Gabriel recounted. Paloma had a 'conventional diagnosis' and was 'engaging with doctors and had scans'. 'Unfortunately on the 22nd December she got told in hospital that she had non-Hodgkin lymphoma which for a girl of her age with her prognosis, very high survival rate,' he added. 'I remember thinking, she'll do chemotherapy and she'll be fine. She was engaging with her doctors and she was actively weighing up her options but it was when she told my mum 'I've got cancer' that was when the control and coercion started. 'Before I knew it my sister had gone from not speaking to my mum to now she's removed from the hospital, doctors are stopped from contacting her and she's been coerced into doing this alternative therapy that my mum was advocating.' He added: 'My mother and father pressured her into not doing chemotherapy, either it was some of their associates feeding my sister misinformation regarding chemotherapy saying it will kill you or the survival rate isn't true. 'Or they were saying, our treatment is going to leave you fertile and it's 100% chance of survival.' Gabriel recalled how he was told on Christmas Eve by his sister's boyfriend that she had been discharged from hospital and was taking an alternative route. He said: 'I remember in that moment thinking 'Oh god, my sister is going to die if I don't do something as soon as possible'. I know my brother had a similar feeling as well.' Gabriel had expressed how he disagreed with his mum's treatment plan for Paloma and claims he was subsequently stopped from seeing her for the last seven months of her life. Cat asked: 'How do you feel about your mum now in respect to your sister?' Gabriel replied: 'It's my opinion that she sacrificed my sister on the altar of ideology for her own benefit, for her own public exposure. 'I have no feelings towards her. I think she should face justice, I'm determined for her to face justice.' Towards the end of the discussion, Ben said: 'We did reach out to Paloma's mum and dad, your parents, neither responded directly to the allegations but your mother has made unfounded allegations against the hospital and its staff. 'We've seen no evidence to substantiate these claims. The inquest is due to begin next month to establish the circumstances surrounding Paloma's death.' He asked: 'What are you hoping you get from the inquest?' Gabriel said: 'I'm hoping they establish the facts and they find the information that my sister died as a result of the rejection of treatment and as a result the non-Hodgkin lymphoma went untreated. 'For me, a definitive cause of death needs to be established first, before we can start talking about medical negligence and getting justice for my sister and a possible criminal case, it's definitely something I'm discussing with my lawyers.' He hopes to help 'save many other people' from being 'coerced' into alternative treatments. 'But also seeing if we can get the law changed to acknowledge medical coercion better with the online bill that's going through... right now legal but harmful is still allowed and I don't think that should be the case.'
