Latest news with #ArneCavents
Euronews
4 days ago
- Business
- Euronews
UK ban on single-use vapes comes into force to stop children's use
A ban on disposable vapes came into force across the United Kingdom on Sunday as the British government aims to stem their use by children, reduce litter, and prevent the leaking of harmful chemicals into the environment. The ban makes it illegal for any retailer – online or in-store – to sell vapes, whether they contain nicotine or not. They will still be able to sell reusable vapes. The crackdown follows the soaring use of disposable vapes in schools and a rising tide of trash as users dispose of the vapes. It is estimated that as many as 5 million disposable vapes are thrown in bins or littered every week across the UK, rather than being recycled. A number of countries are seeking to regulate the vape market, which has grown exponentially over the past decade or so. Australia outlawed the sale of vapes outside pharmacies last year in some of the world's toughest restrictions on electronic cigarettes, while Belgium became the first European country to ban the use of disposable vapes at the start of this year. California has been at the forefront of bringing in new regulations in the United States. The UK's Department for Environment, Food and Rural Affairs said usage among young people remained too high, and the ban would "put an end to their alarming rise in school playgrounds and the avalanche of rubbish flooding the nation's streets". Also known as single-use vapes, disposable vapes are non-refillable and unable to be recharged, and are typically thrown away with general waste or just thrown on the street. Even when they are recycled, they need to be taken apart by hand, while their batteries are a fire risk to recycling facilities and can leak harmful chemicals into the environment and potentially harm wildlife. Businesses were given six months to prepare for the change by selling any existing stock. Rogue traders who continue to sell them risk a fine of £200 (€239) in the first instance, followed by an unlimited fine or jail time for repeat offending. The UK Vaping Industry Association said its members had moved quickly to comply with the June 1 deadline, but warned of "serious unintended consequences" emanating from too much regulation. "We are concerned that this ban will encourage former smokers who have already transitioned from cigarettes, which kill 220 people every day in the UK, to return to combustible tobacco or opt for unregulated vapes," said its director general, John Dunne. Separately, the British government is legislating to potentially restrict the packaging, marketing and flavours of e-cigarettes. Arne Cavents was four years old when he was misdiagnosed. Growing up in a small city in Belgium, Cavents knew he was different from other children. He'd had surgery to correct his inward-turning legs, and had difficulty tying his shoes and riding a bicycle. Due to his symptoms, he was believed to have Charcot-Marie-Tooth disease (CMT), a progressive hereditary condition that causes muscle weakness in the feet, ankles, legs, and hands. His mother, sister, and grandmother suffered the same issues. It wasn't until 2017, when Cavents and his wife started thinking about having children, that he decided to get genetic testing to confirm the diagnosis. But five years and three hospital visits later, the tests had only ruled out CMT – until he received a call in 2022 from a doctor in Antwerp who had detected an unusual mutation in one of his genes. Cavents was eventually diagnosed with distal myopathy with early childhood onset, a rare condition that, like CMT, causes weakness in the feet. His doctor estimates it affects one in one million people. 'Finally, we know what is going on,' Cavents, a 32-year-old health insurance agent, told Euronews Health. He said the diagnosis was 'a great relief' after years of 'uncertainty, sadness, hope, [and] disappointment'. Cavents is one of hundreds of patients with previously unknown genetic conditions who got answers as a result of a European programme to give them a second chance at diagnosis. By definition, these conditions affect fewer than five people per 10,000, and about 80 per cent have genetic origins. On average, patients wait 4.7 years before they are diagnosed, with younger people facing longer delays that can make it harder to find the right treatment, according to a 2022 survey of more than 10,000 rare disease patients across Europe. Diagnosis 'is really the first step,' Roseline Favresse, head of research policy and initiatives at the advocacy group European Organisation for Rare Diseases, told Euronews Health. As part of a study published in the journal Nature Medicine this year, researchers from 37 medical centres across Europe pooled their data and reexamined the records of about 6,500 rare disease patients who did not have a genetic confirmation of their diagnosis, as well as 3,200 relatives. This data-sharing partnership, known as Solve-RD, allowed researchers to analyse more recent studies on gene mutations, use cutting-edge technology to identify potential variants, and consult experts in other countries – a key component because these conditions are so rare that many diagnosticians lack expertise in any one particular disease. 'By having novel software tools to mine the data, with existing data you can make a new genetic diagnosis,' said Richarda de Voer, an associate professor of cancer genomics at Radboud University Medical Centre in the Netherlands, who worked with Solve-RD to diagnose rare hereditary cancers. As part of the Solve-RD programme, more than 500 people were diagnosed with rare neurological disorders, severe intellectual disabilities, muscle diseases, hereditary gastrointestinal cancer, and other conditions. For about 15 per cent of them, diagnosis led directly to new treatment options or other medical support. For the rest, it offered clarity and hope that new treatments could become available in the future. 'These disorders are rare, they are genetic, and in the past, we would say they are not curable,' Dr Jonathan De Winter, a rare disease researcher at the University of Antwerp and Cavents' doctor, told Euronews Health. 'But that's really changing in the past years,' he added. For Cavents, his diagnosis opened the door to fatherhood after years spent worrying he could pass his condition on to his children. He and his wife will now have the option to monitor for the genetic variant through prenatal diagnostics or during in vitro fertilisation (IVF), in which embryos would be tested for the mutation before being implanted into his wife's uterus. Despite the lack of treatment options for Cavents at present, his diagnosis has been so life-changing that he and his wife sometimes joke about naming their future child after De Winter. 'It's been a long road. In the end, it is a positive outcome for me,' he said. The Solve-RD programme ended in 2024, but its early findings are central to a new international project that aims to improve prevention, diagnosis, and treatment for Europe's 30 million rare disease patients. Through the new project, known as the European Rare Disease Research Alliance (ERDERA), researchers are working with bigger genetic datasets and incorporating more advanced genome sequencing technology that should help them detect complex mutations. 'We use the lessons learned from Solve-RD for ERDERA,' Alexander Hoischen, a geneticist and professor at Radboud University who co-led the Solve-RD project, told Euronews Health. 'We are now already more efficient in making diagnoses,' he added. As a result, clinicians should be able to share some potential new insights with patients within the next year, according to Holm Graessner, a rare disease researcher in Germany who worked with Solve-RD and now co-leads ERDERA's clinical research network. 'We now have the chance to… scale it up, to further develop it, and to include further countries,' Graessner told Euronews Health. As researchers take those steps, patient advocates want the programme to move beyond academic settings to make genetic reanalysis available in all clinics that treat rare disease patients. 'What we hope to see is a significant increase in the percentage of cases solved after reanalysis,' Favresse said, as well as 'equal opportunities for everyone to benefit from a second chance at being diagnosed'.
Euronews
7 days ago
- Health
- Euronews
Data-sharing gives rare disease patients another chance at diagnosis
Arne Cavents was four years old when he was misdiagnosed. Growing up in a small city in Belgium, Cavents knew he was different from other children. He'd had surgery to correct his inward-turning legs, and had difficulty tying his shoes and riding a bicycle. Due to his symptoms, he was believed to have Charcot-Marie-Tooth disease (CMT), a progressive hereditary condition that causes muscle weakness in the feet, ankles, legs, and hands. His mother, sister, and grandmother suffered the same issues. It wasn't until 2017, when Cavents and his wife started thinking about having children, that he decided to get genetic testing to confirm the diagnosis. But five years and three hospital visits later, the tests had only ruled out CMT – until he received a call in 2022 from a doctor in Antwerp who had detected an unusual mutation in one of his genes. Cavents was eventually diagnosed with distal myopathy with early childhood onset, a rare condition that, like CMT, causes weakness in the feet. His doctor estimates it affects one in one million people. 'Finally, we know what is going on,' Cavents, a 32-year-old health insurance agent, told Euronews Health. He said the diagnosis was 'a great relief' after years of 'uncertainty, sadness, hope, [and] disappointment'. Cavents is one of hundreds of patients with previously unknown genetic conditions who got answers as a result of a European programme to give them a second chance at diagnosis. By definition, these conditions affect fewer than five people per 10,000, and about 80 per cent have genetic origins. On average, patients wait 4.7 years before they are diagnosed, with younger people facing longer delays that can make it harder to find the right treatment, according to a 2022 survey of more than 10,000 rare disease patients across Europe. Diagnosis 'is really the first step,' Roseline Favresse, head of research policy and initiatives at the advocacy group European Organisation for Rare Diseases, told Euronews Health. As part of a study published in the journal Nature Medicine this year, researchers from 37 medical centres across Europe pooled their data and reexamined the records of about 6,500 rare disease patients who did not have a genetic confirmation of their diagnosis, as well as 3,200 relatives. This data-sharing partnership, known as Solve-RD, allowed researchers to analyse more recent studies on gene mutations, use cutting-edge technology to identify potential variants, and consult experts in other countries – a key component because these conditions are so rare that many diagnosticians lack expertise in any one particular disease. 'By having novel software tools to mine the data, with existing data you can make a new genetic diagnosis,' said Richarda de Voer, an associate professor of cancer genomics at Radboud University Medical Centre in the Netherlands, who worked with Solve-RD to diagnose rare hereditary cancers. As part of the Solve-RD programme, more than 500 people were diagnosed with rare neurological disorders, severe intellectual disabilities, muscle diseases, hereditary gastrointestinal cancer, and other conditions. For about 15 per cent of them, diagnosis led directly to new treatment options or other medical support. For the rest, it offered clarity and hope that new treatments could become available in the future. 'These disorders are rare, they are genetic, and in the past, we would say they are not curable,' Dr Jonathan De Winter, a rare disease researcher at the University of Antwerp and Cavents' doctor, told Euronews Health. 'But that's really changing in the past years,' he added. For Cavents, his diagnosis opened the door to fatherhood after years spent worrying he could pass his condition on to his children. He and his wife will now have the option to monitor for the genetic variant through prenatal diagnostics or during in vitro fertilisation (IVF), in which embryos would be tested for the mutation before being implanted into his wife's uterus. Despite the lack of treatment options for Cavents at present, his diagnosis has been so life-changing that he and his wife sometimes joke about naming their future child after De Winter. 'It's been a long road. In the end, it is a positive outcome for me,' he said. The Solve-RD programme ended in 2024, but its early findings are central to a new international project that aims to improve prevention, diagnosis, and treatment for Europe's 30 million rare disease patients. Through the new project, known as the European Rare Disease Research Alliance (ERDERA), researchers are working with bigger genetic datasets and incorporating more advanced genome sequencing technology that should help them detect complex mutations. 'We use the lessons learned from Solve-RD for ERDERA,' Alexander Hoischen, a geneticist and professor at Radboud University who co-led the Solve-RD project, told Euronews Health. 'We are now already more efficient in making diagnoses,' he added. As a result, clinicians should be able to share some potential new insights with patients within the next year, according to Holm Graessner, a rare disease researcher in Germany who worked with Solve-RD and now co-leads ERDERA's clinical research network. 'We now have the chance to… scale it up, to further develop it, and to include further countries,' Graessner told Euronews Health. As researchers take those steps, patient advocates want the programme to move beyond academic settings to make genetic reanalysis available in all clinics that treat rare disease patients. 'What we hope to see is a significant increase in the percentage of cases solved after reanalysis,' Favresse said, as well as 'equal opportunities for everyone to benefit from a second chance at being diagnosed'. A new artificial intelligence (AI) tool could boost health outcomes for some men with prostate cancer by identifying whether they would benefit from a promising treatment. The drug abiraterone works by blocking testosterone production throughout the body, including in the tumour. It's been shown to slash the risk of death by nearly half for about one in four men with prostate cancer – but it can be costly and have side effects, making health authorities wary of prescribing it too readily. That means getting abiraterone to the right patients at the right time could help improve their prognosis, while also avoiding over-treating patients who might not benefit from the drug, according to the study led by UK institutions. 'This research shows that we can pick out the people who will respond best to abiraterone, and those who will do well from standard treatment alone – hormone therapy and radiotherapy,' Nick James, the study's co-lead and a professor of prostate and bladder cancer research at the UK's Institute of Cancer Research, said in a statement. The findings were presented this week at the American Society of Clinical Oncology's annual meeting in Chicago. Scientists used AI to study images of tumour samples and identify biomarkers that could have otherwise gone undetected, and then applied the test to biopsy images from more than 1,000 men who had participated in another clinical trial on prostate cancer treatments. Among patients with biomarker-positive tumours, abiraterone slashed the risk of death from 17 per cent to 9 per cent within five years. For those with biomarker-negative tumours, abiraterone did not significantly reduce their mortality risks – meaning these patients should receive standard treatment, the study concluded. Researchers noted that abiraterone can cause side effects such as high blood pressure, liver problems, and diabetes, meaning the AI tool could help direct prostate cancer patients to the best treatment for them. 'This study shows, in a very large cohort of patients, that novel algorithms can be used to extract information from routinely available pathology slides to tailor these treatments to specific patients and minimise over treatment whilst maximising the chance of cure,' Gert Attard, the study's co-lead and a professor of medical oncology at the University College London Cancer Institute, said in a statement. In the United Kingdom, abiraterone has been approved in Scotland and Wales to treat newly-diagnosed, high-risk prostate cancer that has not yet spread, but in England, it is only available through the National Health Service (NHS) for men whose cancer has metastasised. The researchers called on the NHS to reassess this decision, saying 8,400 men per year could potentially benefit from the drug. 'Access to this life-extending drug is currently a postcode lottery – with those living in Scotland and Wales able to receive the treatment for free,' James said. Prostate cancer is one of the most common forms of cancer for men, with nearly 336,000 new cases diagnosed every year in the European Union.
