Inquiry begins into historical use of anti-epileptic drug and effects on pregnant women
Mothers of children diagnosed with foetal valproate spectrum disorder (FVSD)
have long called for a public inquiry to investigate why they were not warned about the risks of taking the drug while pregnant
.
FVSD is caused by exposure in the womb to valproic acid, which is the key ingredient in sodium valproate, better known in Ireland as Epilim.
An Irish Medical Journal study published in 2021 said diagnosing the condition was 'difficult' due to the lack of any specific diagnostic test or biomarker.
READ MORE
However, it said dysmorphic facial features, neural tube defects, congenital heart disease and cleft lip were among the most commonly associated characteristics.
The study noted that Irish public health data suggested 3,126 babies were potentially exposed to sodium valproate before birth between 1975 and 2015.
Minister for Health Jennifer Carroll MacNeill said the inquiry would give people directly affected by sodium valproate an 'opportunity to have their voices heard'. She welcomed the commencement of the inquiry, which was announced last year by her predecessor, Stephen Donnelly.
She said she recently met the Organisation Anticonvulsant Syndromes Ireland (OACS Ireland), a campaign group dedicated to supporting and advocating for families affected by foetal anticonvulsant syndrome.
'I know this is an important day for them and the families they represent,' Ms Carroll MacNeill said.
'I have every confidence that the chair will conduct an independent and fair inquiry and finally get answers for those affected and their families.'
The inquiry, involving three distinct phases, is chaired by barrister Bríd O'Flaherty. The Department of Health said it envisaged she would spend 12 to 18 months conducting an 'independent, fair and rigorous process'.
The first phase will establish a timeline for the use of sodium valproate in women of childbearing potential in the State, including information on regulation, prescribing, dispensing and safety information issued.
The inquiry will document the evolution of the drug's regulation and practices around its control.
The second phase will focus on oral statements from people diagnosed with FVSD, their mothers and other family members.
The final strand will assess the health service's capacity to respond to safety issues related to the use of anti-seizure medications in women of child-bearing potential.
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Irish Times
3 hours ago
- Irish Times
Inside crisis-hit special care: ‘They are not monsters. They are ordinary kids that have gone through difficult things'
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It is an indictment of the State that those special care beds are not available.' Mr Justice John Jordan oversees the special care list in the High Court. Photograph: Áras an Uachtaráin As recently as June 19th, Mr Justice Jordan said it was like 'winning the All-Ireland' to hear, for the first time in more than six months, every child with a special care order had a placement. Last Thursday, however, the 'no beds' list section was back. The parents of a vulnerable teenager said they were 'at their wits end' due to no placement being available for their child despite an order being granted the previous week. There were 'significant concerns' for the child who was described as being suicidal and had 'overdose tendencies', said Sarah McKechnie, barrister for Tusla. 'It is my understanding a bed won't be available until in or around August 25th.' In an online post, the child's mother said the teenager was in hospital following a suicide attempt – the latest of many. 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In recent weeks, The Irish Times was granted unprecedented media access to the largest special care unit, Crannóg Nua. Adjacent to the St Ita's Hospital campus, and behind 20-foot high fences, the facility is bright and modern, located on a landscaped campus. However, just five of the 12 beds are open. During the visit, social care workers, kitchen staff, the on-campus school principal and management talk about how the facility works. There were glimpses of three children, all of whom were calm, during and between activities with their support workers. A notice board in the dining area of Crannóg Nua special care unit for minors in Portrane, Co Dublin. Photograph: Bryan O'Brien Once an order is made, gardaí get involved to 'ensure [the child is] brought safely to the service', says Tusla. Each child has an en suite single-bedroom – which they may personalise with posters or photos – though there is little to no privacy. 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'We can see what's happening to them truly when they come to a service like this. 'Take the risks away and you are then dealing with the person. It may be the first time they are being seen for who they are, and not just as them in their circumstances.' He adds that 'the kids generally settle within days' and engage with staff and education and develop positive relationships. 'It is a really positive intervention when you remove the risk and hopefully identify what they need.' From 2013 to the end of last year there were 269 admissions to special care, some of which were repeat. The annual high was 33 children in 2014. Last year there were 14 – seven boys and seven girls. There has been no longitudinal study on long-term outcomes of the system, O'Rourke says, though one is 'being commissioned' by the Department of Children. Crannóg Nua staff have an optimistic yet realistic approach. 'There is no quick fix,' says Oisin Mulchrone, deputy social care manager. 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Irish Times
3 hours ago
- Irish Times
Drugs like Ozempic aren't changing negative narratives around diet and weight
Friends keep asking me what I think about Ozempic . I know they're asking because I've written about food history, gender and eating disorders, but until recently I wasn't sure what I thought, wasn't sure that someone who has never had metabolic disease or lived in a body that attracted comment had any business having opinions about the drugs called GLP1 agonists. I support any development that undermines the idea that bodyweight has a moral aspect, or that individuals control the size of their bodies. We are shaped in every way by environment, society and genetics far more than by the small scope of personal choice within those determinants. Health is mostly determined by heredity and wealth. So if the new drugs stop people insisting that self-discipline and self-starvation are the answer to fatness, all to the good. [ Sarah Moss: 'I'm a classic first child. A driven overachiever. Slightly neurotic' Opens in new window ] But I'm not sure they're generally helping us live better lives. I gather GLP1 agonists are good as diabetes medication – not an area in which I am qualified to opine. Their rising use for other purposes seems to be correlated to increasing media excitement about extreme thinness, particularly in women, which is demoralising to those of us who grew up with heroin chic and the worship of emaciation and have lived in the shadow of those ideals ever since. If the drugs are changing narratives about diet and weight, I'm not seeing it. There's no decline in mindless writing about and advertising of 'guilt-free' foods and 'guilty pleasures'. (What you put in your mouth has no bearing on your moral worth. The only sinful foods are those harmfully produced.) READ MORE I understand that these medications work by depriving people of pleasure in eating. I'd argue that pleasure is politically and ideologically important as well as nice, that without pleasure we fall prey to the idea that life is nothing but scarcity and survival, which leads quickly to the idea that life is a competition and weakness is failure, at which point you're well down the road to dark places we don't need to go. Taking expensive drugs to make daily life less fun so you take up less space doesn't sound to me like the kind of choice made by happy people in a functional society, though you could argue that unhappy people in a dysfunctional society – for example, fat people hoping to be paid, promoted and desired as much as their thinner colleagues in Europe today – might perfectly sensibly make such decisions. Getting thin to succeed in a fat-phobic society is still an understandable individual solution to a structural problem. And it seems to me that the big structural problem here is not that people are fat but that we have created and continue to promote a food system that makes most consumers unwell, and are now creating and promoting a regime of medication that, at great financial and personal cost, claims to counteract the effects of that food system. We're all being sold ultra-processed, intensively farmed food that makes us and our planet sick, and then being sold drugs that moderate the effect of that food on individual bodies but compound the harm to the environment. I am certain that the same shareholders profit from the manufacture and sale of the food that causes the problem and the drugs that treat it. Ozempic's popularity is a symptom and driver of social and economic injustice, and I wish we could spend some of its cost on systemic change instead None of which means that I blame any individual for making whatever decisions seem necessary to cope. I only note that the troubles that show up in our bodies rarely began there, and therefore the sustainable solutions won't begin with injections. There are countries that have been able to reduce the proportions of intensively produced and processed foods consumed by their populations, especially by children. There are examples of local, regional and national governments creating and sometimes imposing healthier and more sustainable environments, but it can't happen without at least some popular demand, and the established interests and beneficiaries of harmful systems will never want such change. So what I think about Ozempic is that its popularity is a symptom and driver of social and economic injustice, and I wish we could spend some of its cost on systemic change instead. We could subsidise the production and transport of a lot of fresh local produce and build a lot of playgrounds, sports facilities and bike lanes for what we lose paying pharmaceutical companies to heal us from their absence. And it would be much more fun.
Irish Times
9 hours ago
- Irish Times
Best time to introduce alcohol health warnings is today
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