Island Life: Tune in, turn on, score some Vogels.
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I wonder if if any journos thought of actually asking anyone with NTD their opinion of this debate?
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My only reason for raising the cost/benefit issue, and I should have made this clearer, is because I've been peeved with the "everyone's freedom from harmless additives is more important than a few people's health" vibe that comes through from many of the opponents of fortification. There are many ways to count the costs of health or suffering - if people are going to avoid a minimal cost to themselves while incurring an incalculable cost to others, then perhaps pointing out they pay a share of those costs in taxpayer dollar terms will persuade them. Hearing the voices of real people affected by NTDs may also do so.
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I've come back late to this thread: it is really interesting the way it is swaying in & around...
I truly loathe 'mass medication' - e.g. I dont like fluoride in the main water supplies; I resist iodised salt, and I can get quite enough B9 should I want some-and I have a mate who is an artisanal baker...
BUT - I eat a lot of seafood, can obtain unfluoridated water, and am not, in any way, likely to become pregnant. And - & this is important - pretty well all my large whanau is knowledgable, careful, and caring, &
able to access what the kids & the kids-to-be need (as well as attend to their own specific wants & needs.)And we all know that this happy position is not everybody's: I still think it is the responsibility of the state health system, as well as individuals, to make sure the right people get the right -supplements - when & as they need them-
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I very much believe that parents should be able to make informed decisions about such things
I totally agree - and that means informed about the whole picture not a narrow slice of it. It means hearing from families and disabled adults about what life has been and is like for them.
They have to be some of the hardest decisions, and I have the utmost respect for anyone who has done that. I just think they deserve better than is currently served up. And I'm doing some things about it.
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I've gotta go in a minute, but will come back to this later, as it has been on my mind. I'd be interested to hear about how we get to
hearing from families and disabled adults about what life has been and is like for them
in regards to transitory debates like this - how can the path between the journo asking the questions and someone putting their head above the parapet to answer? I'm picking that some/many may feel intimidated by the media?
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I have had a flash of brilliance. Brilliance, I tell you.
We can partition the population of women in the fertile age range into two groups: those who are trying for or open to pregnancy, and those who are not.
The first group can be directly provided with prenatal vitamins. Yay! Free vitamins!
To cover the second group, the obvious thing to adulterate is...contraceptives.
Yes, still holes in coverage (fnar fnar). Are they any bigger than the holes in bread coverage, though?
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Amy, how?
A survey? Who wants to answer a government-run survey on their chances of getting pregnant? How much more intrusive is that than general fortification? How likely is it to generate accurate results, and what's the turnout likely to be?
Take the latest citizens' initiated referendum as a benchmark as to how expensive these things are to organise. $9 million? And I'm not counting the costs of the free vitamins, which last time I checked was about $15 for three months' worth, so $60 per year per woman. There are about 900,000 women aged between 15 and 45 - assuming only 10% of these are in the potentially pregnant category, that's $5.4 million a year.
And why bother with the survey if you're going to deliver the supplement to both potentially pregnant and trying-not-to-be pregnant women?
I think the government could do a lot more to promote awareness of folate consumption, because about-to-be pregnant women need a lot more than they'll get through fortification, but there are real practical difficulties reaching an audience like that.
Oh, and talk about how things have changed. That's amazing.
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If the folate fortification would produce a 12% decrease in the incidence of NTDs, how much of the remaining 88% is a result of some hereditary genetic situation, and can this genetic condition be screened for?
It sounds like the herediary aspect would account for a greater percentage than the folate-deficiency and if it can be screened-for then I would suggest that was a 'better' course of action.
(This is assuming that the figures are ballpark-correct and that the aim of folate fortification is a reduction in NTD births)
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According to CCS, NTDs are 70% preventable by taking folate supplements.
Mandatory folate fortification doesn't deliver enough folate to achieve the full effect (because if the level was raised to full protection, there would be more people getting more than the Upper Tolerable Limit, beyond which it can mask B12 deficiency), so it only prevents 12%. The job of FSANZ and associated other experts is to set the balance between providing some form of general protection and making sure it's not too much.
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Thanks for that clarification. It doesn't make it any easier for me to decide one way or another because the level of fortification is so low that it is addressing 12% where 70% is amenable to being addressed by increased folate.
Any improvement is obviously a good thing but I can't help feeling that it could be better targeted or somehow improved so it gets closer to preventing the whole 70% amenable to this solution.
Oh well...it's an imperfect world.
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last time I checked was about $15 for three months' worth, so $60 per year per woman
You're clearly considering non-PHARMAC prices ;)
If they can get paracetamol tablets for under a cent each, I think they'd be able to get a reasonable bulk deal on whatever vitamins they wanted. -
Quite true - I was only going on data I had access to. I understand that APO-folate is subsidised to get it down to about $15 for 90 tabs - certainly the other commercially available supplements are a lot more expensive.
It was only because I fossicked around deep in the MOH website when I first contemplated taking it, that I found out about the cheap sort. The whole issue is a monster fail in public health communications.
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in regards to transitory debates like this - how can the path between the journo asking the questions and someone putting their head above the parapet to answer?
Kerry, I wasn't really talking about journos when the story pops up like this. Good point though.
Our publicly funded health system should be investing in genuine and ongoing informed consent, which would provide some grounding when public discussions do arise.
It has to be seen as broader than brochures given to individuals by genial doctors. Health education and promotion already goes further. Families, whanau, communities and society have a stake and need to be informed and engaged. Media and educational sectors are influential stakeholders. There's no reason why targetted information kits and training resources couldn't be part of it.
I'm also thinking of models like Speakers Bureau from mental health consumer networks. Recording and properly contextualising stories from real people would mean the process can be supportive and they don't have to repeat themselves. Decisions must be informed by more than clinical perspectives, but those are also needed - so links to evidence bases are essential.
The same approach would work for many matters, so I envisage shared infrastructure, tools and relationships. Because we are pragmatic Kiwis, I am sure we can find ways to do this over time that don't cost the earth. And if we do it right, there is another export industry in the offing. It does require thinking about health as more than hospitals for sick individuals, however.
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Hey Sacha, late back to this....and yeah, I've been rambling a bit, I blame it on being stuck at home with the oinky flu this week. Finally got out today, but only becoz the cupboard was bare.
investing in genuine and ongoing informed consent, which would provide some grounding when public discussions do arise.
informed consent for what exactly? To publish/share personal stories or something broader?
targetted information kits and training resources
which share info on how to care for and engage with a broad spectrum of society with significant abilities? I'm being a bit facetious but really, i would have thought that happened already. my bad.
Recording and properly contextualising stories from real people
Like an oral history archive - not necessarily an oral history, some kind of multimedia resource, but approached like oral history/biography?
This is interesting stuff.
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Amy, how?
What do you mean, how? You go to your doctor or pharmacy and say "give me vitamins, please".
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Which is to say, there is no need for any sort of census to determine anyone's plans. Either people are trying, in which case they go off and get their free vitamins, or they are not, in which case they are using contraceptives (or not having sex, which works too).
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What do you mean, how? You go to your doctor or pharmacy and say "give me vitamins, please".
That's pretty much what you do now, with the additional step of handing over a few dollars. The point of the whole exercise is that it doesn't occur to enough people to do so.
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If the underlying message of the flour supplementation proposal is that women in possession of all the facts can't be trusted to care for their own health, and/or that their health is only important with respect to their status as incubators, then I really need to get to the Women's XV clubhouse and start cutting up oranges.
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At risk of flogging a dead horse, women aren't in the possession of all the facts. It's hard, if not impossible, to be in possession of all the facts. Judging by some of the comment I've read, few people even among those who have a view on this issue know the basic facts of how much folate the general population needs, how much they get, how much fortification will deliver, how much is within demonstrably safe levels, and how much pregnant women need.
Even if you bombarded people with education to make sure people did know, you've still got the massive unknowable question of "will I be pregnant in a month's time?" Around half of pregnancies are unplanned, presumably the result of less-than-effective contraceptive use.
Informed choice is great, but choice without information is pointless. I don't see "anyone who doesn't have their ovaries under lockdown needs to take folate" as being much better than "let's put the equivalent of a serving of marmite into everyone's bread just in case".
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informed consent for what exactly?
Kerry, I hope your flu is getting better. We were talking about a health intervention, not media, so I meant the informed consent that is supposed to be part of every health or disability service experience, as defined in the Health and Disability Code (see especially Rights 5, 6 and 7).
Informed choice is great, but choice without information is pointless.
Totally agree.
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Health and Disability Code (see especially Rights 5, 6 and 7).
Informed choice is great, but choice without information is pointless.
Totally agree.
Don't know how I honestly feel about this issue,( never stopped me before so...) but I was wondering why cant we set up a study to prove/disprove the theory of folate? If there is in ya face proof for NZers( not Ozzies), would it not be easier to convince the public at large of benefits of "vitamins" rather than benefits of folic "acid"?(I think wording has proved a biggie with our public's reading of papers like Granny Harold.) As mentioned, the insights of the professionals ( being the disabled) would be beneficial, so too could the mouths that fed.Actually I am not against the idea,but I could see a mandatory amount of production so the consumer has choice, could maybe work and let those against do what they want.( like free range is doing)?
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