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Irish Examiner
an hour ago
- Health
- Irish Examiner
Parents of boy with muscular dystrophy to hold rally at Dáil to campaign for vital drug
The mother of a child with a muscle-wasting disease is to hold a rally at the Dáil on Wednesday, urging the Government to support the introduction of a vital drug here that will help slow progression of the disease. Archie Ennis, aged 8, from Dublin, was diagnosed with muscular dystrophy before Christmas — a condition that affects about 120 boys in Ireland. There is no cure for it. The schoolboy's parents, Una and Kenneth, launched a GoFundMe campaign to help pay for specialist gene therapy in the US, which costs at least €3.2m. Meanwhile, the couple had also been campaigning for the Government to sanction pay for a new drug called givinostat, which has just been approved by the European Medicines Agency. Ms Ennis told the Irish Examiner: 'This drug will slow down Archie's muscle-wasting disease, but it also means it will help other children here. Archie Ennis: The rally outside the Dáil will take place at 1pm and Ms Ennis will be joined by family, friends and the other parents of boys with muscular dystrophy who are all supporting the call for the rollout of givinostat here. 'The drug was approved by the EMA recently, now the pharmaceutical companies can apply to the Government to see if they will refund the drug. 'But that will take time as they have to wait for the Government to decide if they will pay for this in order to make it free here. 'It makes sense for it to be made available free here, if the Government doesn't pay for the drug, they will be paying for other things such as more equipment for a child with the disease, they'll be paying for the care of that child, and carer's allowances — it all balances out,' Ms Ennis said. The rally outside the Dáil will take place at 1pm and Ms Ennis will be joined by family, friends and the other parents of boys with muscular dystrophy who are all supporting the call for the rollout of givinostat here. 'Time is muscle' she said. 'Archie's muscles are weak; he needs help going up the stairs and he gets tired when we are out on walks. This drug will slow down the progression of the disease, keep him on his feet for longer, keep his heart and lungs healthier longer and he will do better. She said the drug givinostat was something 'that the country needs,' but Archie will also need gene therapy — for which they are fundraising. The GoFundMe has so far raised €600,000 for Archie's treatment abroad, but it not even half of what he needs. 'We have been to Miami to get tests done but we really need the drug introduced here to start the process. 'We are hoping to follow Scotland, which is pushing to have the drug in pharmacies within five months. 'We have booked the AV room in Leinster House for 2:30pm on Wednesday and have invited all of the TDs, including the health minister to come along and hear our stories.'
Irish Daily Mirror
7 hours ago
- Health
- Irish Daily Mirror
Mum urges Irish approval for medicine for son with life-limiting condition
A desperate mother has encouraged the State to quickly approve and fund life-changing medicine for her eight-year-old son who suffers from a life-changing and life-limiting rare form of muscular dystrophy. Alfie Ennis suffers from Duchenne muscular dystrophy and is in desperate need of medication to help his condition. His mother, Una Ennis, told the Irish Mirror that "time is muscle" and children like Archie could face dying in their 20s if medicine is not approved quickly. Archie Ennis, 8, from Tallaght, south Dublin, was diagnosed with Duchenne muscular dystrophy in December 2024. The condition affects around 120 children in Ireland. Mrs Ennis described Archie as a "little character" who loves to play with his friends and "be with all the boys". He is aware his muscles get tired but he is a "determined" boy, who is now on steroids. Mrs Ennis explained: "Archie was diagnosed with Duchenne muscular dystrophy two weeks before Christmas. "We had a feeling something was going on with Archie. We actually thought at the start that it was just dyspraxia. "I just thought he needed physio, but the physio wasn't helping, and she said, 'We'll go to the doctor'. "[The doctor] said that Archie has Duchenne muscular dystrophy. It's a progressive muscle weakening condition which will cause his legs to become weaker and then his arms. "She said that most boys who would have Duchenne would end up in a wheelchair. "To hear that and to see our perfect little boy, our whole world was just turned upside down in an instant." She went on to say that Archie's lungs will become weaker and his heart will become weaker. "Most boys in their early 20s can die from cardio myopathy, which causes the muscles in the heart to become a lot weaker," she said. "As parents, you're just devastated and desperate to try and get him some help. "They say it's a rare condition, but it's the most aggressive muscular dystrophy. "You hear all these stories of young boys passing away because they don't get medicine." In April, the European Medicines Agency (EMA) recommended granting conditional marketing authorisation to the drug Duvyzat, also known as Givinostat, as a treatment for Duchenne muscular dystrophy. Last week, the European Commission granted conditional market authorisation for the product. However, Mrs Ennis now fears that it could take several years for Ireland and the National Centre for Pharmacoeconomics (NCPE) to approve its use on the Irish market. She will hold a demonstration outside Leinster House on Wednesday afternoon before presenting to politicians in the AV Room from 2.30pm where she will tell them how urgent the medicine is. Mrs Ennis continued: "Every day that Archie doesn't have medicine, his muscles are dying. "If it's a year or two down the line [that the medicine is approved], I can't reverse that. "I need the medicine as quick as possible, because time is muscle for Archie and all the boys with Duchenne." In addition to Givinostat, Archie will require gene therapy. A doctor in Los Angeles has said that they can give him this treatment. However, his parents have to fundraise €3.5m in order for him to travel to the US. Some €3.2m is required for the medicine, while the extra money is needed for the family to stay there for 12 weeks for the infusion. To date, over €800,000 has been raised. In the meantime, Mrs Ennis is begging the Government and the NCPE to approve Givinostat to help Archie. She is also urging Health Minister Jennifer Carroll MacNeill to attend the briefing in Leinster House on Wednesday. Fianna Fáil Senator Teresa Costello has also urged the Minister to meet the affected parents. The Tallaght-based senator said she emailed the Givinostat manufacturer last week as soon as progress was made with the European approval, asking them to expedite the time the medicine would be available to Irish children. She added: "I will be watching the progress of this like a hawk because we just don't have two years to wait for this to be approved. "Parents are in a really dire situation where every month there is a deterioration with their children."
Daily Mail
18 hours ago
- Health
- Daily Mail
UK vaccine chiefs pause newly approved jab for over 65s
UK vaccine chiefs have suspended a newly approved jab being given to people aged over 65 after reports of two deaths and 21 severe reactions. The vaccine protects against the potentially fatal Chikungunya virus, which is typically found in the subtropical regions of the Americas, Africa, Southeast Asia , India , the Pacific Region and increasingly in Europe. The two fatalities occurred in the French overseas department of La Réunion, in the Indian Ocean, where a vaccination campaign is underway following a recent chikungunya outbreak. The two deaths were an 84-year-old man who developed encephalitis—a swelling of the brain—after having an adverse reaction to the vaccine. The other was a 77-year-old man living with Parkinson's disease. He reportedly began finding swallowing increasingly difficult, which is believed to have caused aspiration pneumonia, a serious infection caused by food, saliva and/or vomit entering the lungs rather than the stomach. The European Medicines Agency, who are reviewing the chikungunya vaccine following the reports, has not yet revealed the time between the dead men receiving the jabs and their deaths. There are no changes in the recommendations for vaccination with IXCHIQ for people aged between 18 and 64. The vaccine is currently not approved for use in individuals with immunodeficiency or immunosuppression as a result of disease or medical therapy. The decision by the Commission on Human Medicines (CHM) is a precautionary measure until a further safety review has been concluded. The Medicines and Healthcare products Regulatory Agency (MHRA) is working with the vaccine manufacturer Valneva. The majority of people infected with Chikungunya develop a sudden fever and severe pain in multiple joints (arthralgia). Occasional cases of eye, neurological and heart complications have been reported, as well as gastrointestinal complaints. A small number of people may develop severe acute disease, which can lead to multiple organ failure and death. Severe symptoms and deaths are rare and usually occur in young babies or elderly people with coexisting health problems. There is no specific antiviral treatment for it but antipyretic and analgesic medications (such as paracetamol) for fever and pain can be used to alleviate these symptoms. There are currently two vaccinations which protect against the virus; IXCHIQ for those aged between 18 and 64 and Vimkunya for those 12 years and older. A recent outbreak in La Reunion, an overseas department and region of France, saw over 47,500 people contract the virus, with 12 fatalities. In 2024 there were 112 Chikungunya cases reported in England, Wales and Northern Ireland from travellers arriving to or returning to Britain—this was nearly one-and-a-half times the level recorded in the previous year.
Time of India
2 days ago
- Health
- Time of India
Eye stroke alert: Ozempic linked to rare vision-loss condition
If you're on Ozempic or Wegovy to manage type 2 diabetes—or to shed some pounds—there's something new you should have on your radar. Doctors are now flagging a rare but serious eye condition that might be tied to these meds. And yes, it could mess with your vision in a big way. The condition is called non-arteritic anterior ischemic optic neuropathy, or NAION for short. But you'll often hear it described more simply as an 'eye stroke.' It happens when the blood supply to your optic nerve suddenly drops, damaging the nerve and causing vision loss—usually in just one eye, and often without warning. Now here's the thing: the European Medicines Agency (EMA) has officially listed NAION as a very rare side effect of semaglutide—the active ingredient in both Ozempic and Wegovy. According to their findings, it affects roughly 1 in 10,000 people. Not exactly common, but not zero either. And some researchers believe people with existing health conditions like type 2 diabetes might face a slightly higher risk. So why does this happen? The exact reason isn't fully nailed down yet, but it's believed that rapid changes in blood sugar (which these medications are known to cause) may play a role. Basically, your optic nerve needs consistent blood flow, and when that gets thrown off—bam, you could end up with NAION. by Taboola by Taboola Sponsored Links Sponsored Links Promoted Links Promoted Links You May Like Sanitize & Smooth Clothes Fast with Philips Steamer Philips Garment Steamers Shop Now Undo Here's what to watch out for: Sudden loss of vision in one eye Blurry or dim vision A dark patch or 'hole' in your central vision If any of that sounds familiar—or happens out of nowhere—don't wait it out. Get medical help immediately. Catching it early could make a difference in protecting your sight. So, should you freak out? Not necessarily. The odds are still pretty low, and Ozempic/Wegovy are helping a lot of people manage serious health issues. But if you're already at risk—especially if you have diabetes, high blood pressure, or sleep apnea—it's worth talking to your doctor. Ask about the pros and cons. Don't panic, just be informed. Your eyes are too important to take chances with. If something feels off, trust your gut and get it checked. It's your vision—we're talking about seeing the world clearly, literally. One step to a healthier you—join Times Health+ Yoga and feel the change
Roya News
3 days ago
- Health
- Roya News
Ozempic, Wegovy linked to rare vision-loss disorder, EU regulator warns
The European Medicines Agency (EMA) said on Friday that Novo Nordisk's popular drugs Ozempic and Wegovy may, in very rare cases, cause a serious eye disorder that can lead to vision loss. Following a months-long safety review, the EMA's Pharmacovigilance Risk Assessment Committee concluded that semaglutide, the active ingredient in Ozempic, Wegovy, and Rybelsus, is associated with rare occurrences of non-arteritic anterior ischemic optic neuropathy (NAION), a condition caused by reduced blood flow to the optic nerve. The disorder is the second-most common cause of blindness due to optic nerve damage, after glaucoma. The EMA said NAION could affect up to 1 in 10,000 patients taking semaglutide and that the risk of developing the condition is roughly double that of individuals not using the medication. The EMA began investigating the link between semaglutide and NAION in December 2023 after earlier studies signaled a possible connection. One large observational study involving nearly 350,000 type 2 diabetes patients showed that long-term semaglutide use more than doubled the risk of developing NAION compared to those on alternative treatments. This marks the first time a regulatory body has formally acknowledged the connection, though academic research had previously pointed to the risk. Semaglutide is part of a class of drugs known as GLP-1 receptor agonists, which regulate blood sugar and promote a feeling of fullness, making them widely prescribed for both diabetes management and weight loss. The EMA has recommended that Novo Nordisk update prescribing information for all semaglutide-containing products to include NAION as a potential side effect, categorized as 'very rare.'
