Why can't the maker donate the drug? What is the maximum outlay for something that effects 32 people anywhere?
Failing that why can't we just collect the money to pay for it?
A woman who is allergic to water (2016)
21–30 of 64 posts
Re: A woman who is allergic to water (2016)
#22> For Rachel, diving into this pool would be like swimming in potent bleach I find this choice of analogy really interesting, since diving into the pool is like swimming in bleach for everyone else too.
I like the fact that the BBC felt compelled to add pictures to this story at all, for the benefit of readers who might be unfamiliar with what a swimming pool or glass of water would look like.
Future historians will thank them :)
Re: A woman who is allergic to water (2016)
#23> For Rachel, diving into this pool would be like swimming in potent bleach I find this choice of analogy really interesting, since diving into the pool is like swimming in bleach for everyone else too.
I like the fact that the BBC felt compelled to add pictures to this story at all, for the benefit of readers who might be unfamiliar with what a swimming pool or glass of water would look like.
Get money worth from those corporate subscriptions to Alamy and Getty Images.
They even partner with Getty Images to market their services for them.
https://www.bbc.co.uk/mediacentre/latestnews/2020/bbc-partne...
Re: A woman who is allergic to water (2016)
#24Wow. Even NHS won’t cover off-label that works?
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Re: A woman who is allergic to water (2016)
#25Earlier quoted context omitted.
Too bad there aren't any NHS competitors.
I’m sure many Americans are now dutifully checking the insurance market to make sure their plan covers this situation. For that price, one might hope that the company producing it would be willing to provide the drugs as an act of good will (and good advertising!)
No organization without the ability to print money is going to have a policy of paying for experimental healthcare treatments, unless they want to go out of business.
It does suck that there aren't enough people to do proper experimentation for this affliction.
Re: A woman who is allergic to water (2016)
#26Earlier quoted context omitted.
For some reason, lots of writers seem to feel that useless pictures are better than no pictures. I see this all the time with programming blog posts too; they’ll stick some stock art of HTML or a computer on a desk or something like that. With news it’s not just burning through my data plan but sometimes it can be actively misleading, like when they pick a picture to represent something but it’s not the actual thing…
There's actually a really specific reason for this. If you have an image it gets shown in link preview on social sites like Facebook and Twitter - this will also work for the article overview on the site if they have one. Links with image previews get shown larger in the feed and get more clicks. So many writers will always try to have an image, no matter how arbitrary.
You could just put the image in the relevant meta tag, there is no need to actually display it in the article.
Re: A woman who is allergic to water (2016)
#27Earlier quoted context omitted.
There's actually a really specific reason for this. If you have an image it gets shown in link preview on social sites like Facebook and Twitter - this will also work for the article overview on the site if they have one. Links with image previews get shown larger in the feed and get more clicks. So many writers will always try to have an image, no matter how arbitrary.
You could just put the image in the relevant meta tag, there is no need to actually display it in the article.
This is a lost battle. Every news website does this now. Even reputable newspapers who would never consider adding a pointless photograph in print have it as a requirement for every online version of the same articles.
I find it insulting to me as reader. Perhaps they should offer a toggle for it in the user settings.
Re: A woman who is allergic to water (2016)
#28> For Rachel, diving into this pool would be like swimming in potent bleach I find this choice of analogy really interesting, since diving into the pool is like swimming in bleach for everyone else too.
I like the fact that the BBC felt compelled to add pictures to this story at all, for the benefit of readers who might be unfamiliar with what a swimming pool or glass of water would look like.
At least they haven't confused the caption text and the alt text like most sites. "For Rachel, diving into this pool would be like swimming in potent bleach" actually adds to the article. It seems like for most sites these days you'd get something like "People swim in a public swimming pool" as the caption.
Re: A woman who is allergic to water (2016)
#29Why can't the maker donate the drug? What is the maximum outlay for something that effects 32 people anywhere? Failing that why can't we just collect the money to pay for it?
Because drugs that only help a handful of people are excellent bargaining chips for pharmaceutical companies when dealing with national governments for coverage of drugs in national healthcare insurance plans.
It's the basic economic law of supply and demand applied to human lives.
The same happens (or happened) with the drug that treats Pompe disease, which is currently priced at a sweet spot high enough that enough insurers can cover it to make massive profits (but some refuse to, because the amount of money spent on it can be used to save more lives when invested in other areas).
Re: A woman who is allergic to water (2016)
#30Earlier quoted context omitted.
Ofcourse there are - we have private insurance marketin UK, few people need them, many employers provide one.
But then you are paying for both private and public healthcare, so it isn’t really competition.
In Australia at least you can claim a tax rebate if you have private health insurance. I imagine the UK would have a similar system.