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.
In the UK, private insurance usually requires you to use the public health system as a first stage, and only fall back to the private one for things not covered by the NHS. So you don't get a tax rebate because you are still relying on the public system.
> In the UK, private insurance usually requires you to use the public health system as a first stage, and only fall back to the private one for things not covered by the NHS.
I don't think it is for things "not covered by the NHS". It depends on your level of coverage but typically you would go to the NHS first and then invoke your private coverage when you have a diagnosis in order the eg skip the queue.
When a relative had a heart attack, he was put on a waiting list for a heart bypass - 1 year. When he invoked insurance, he got seen within a month - by the same doctor and in the same facility as it would have been on NHS.
In a lot of instances the private health care system is just paying the public one for advantageous access to services.
The problem I see with that, is that if my private insurance is with my employer, I am making no public contribution while I am healthy but earning money.
Then while I am on pension I am back on the public system, I am making no contribution but using it most.
That would basically be a system designed to bancrupt the public but lucrative for private insurers.
This comment in a nutshell reveals the ignorance of US consumers. Just because you think something should work the way you want, doesn't mean that's reality.
There is no "health insurance market" in the US, since you can't actually negotiate with any entity in the insurance industry.
Even for most companies, come Jan. 1, they switch providers to the lowest-cost they can find since there is no ability to negotiate with their current provider after the inevitable and compulsory 20%/annum increase.
If you pay cash; yes. But private health insurance is pretty cheap in the UK because most policies don't have to cover exceptional diseases because they cite that you will be provided care under the NHS.
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.
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 they are talking about.
Sometimes pictures help break up the monotony of the text, sometimes they're there because the editor said this is how things are done. I'd say the second case is true here because no sane person writing that text would think "This article would be too difficult without a photo of a glass of water."
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.
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.
Newspaper usually need to be printed as cheap as possible, so printing images probably damages that requirement.
Media where printing costs are not a major problem (such as magazines) have always included pictures, mostly as an aesthetic choice - to most (if not all) people, graphical elements here and there make the pages simply look more appealing.
They should use Unsplash. Many a blog post which would have shown a pic of a hoodied hacker starting at minified JS code instead shows a beautiful landscape for our pleasure.
I cant comprehend why would you find it insulting. I mean, this is not even nano-aggression, it really says nothing at all and even less something bad about you.
But then when you clicked on the picture and didn't see it on the displayed page might wonder if it's the right article, especially if the title was missing or editorialized in the reference.
Not being a designer; whenever I make a site as a side project I struggle with making it look like anything. I don't mean making it look good; just making it not look like an ultra utilitarian 90's style blocks of text page.
I wonder if there could be a similar situation here. Without some sort of image it's difficult to make the page not look empty or sterile.
This article contains one of my favorite pieces of his writing:
> you can ask almost any programmer today about the code they are working on. “It’s a big hairy mess,” they will tell you. “I’d like nothing better than to throw it out and start over.”
> Why is it a mess?
> “Well,” they say, “look at this function. It is two pages long! None of this stuff belongs in there! I don’t know what half of these API calls are for.”
> Before Borland’s new spreadsheet for Windows shipped, Philippe Kahn, the colorful founder of Borland, was quoted a lot in the press bragging about how Quattro Pro would be much better than Microsoft Excel, because it was written from scratch. All new source code! As if source code rusted.
> Back to that two page function. Yes, I know, it’s just a simple function to display a window, but it has grown little hairs and stuff on it and nobody knows why. Well, I’ll tell you why: those are bug fixes. One of them fixes that bug that Nancy had when she tried to install the thing on a computer that didn’t have Internet Explorer. Another one fixes that bug that occurs in low memory conditions. Another one fixes that bug that occurred when the file is on a floppy disk and the user yanks out the disk in the middle. That LoadLibrary call is ugly but it makes the code work on old versions of Windows 95.
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.
The worst example of this, in my experience, is any newspaper article about arachnophobia. They always seem compelled to add a photo of a nasty looking spider.
As an arachnophobe, I find this actually quite abusive as it seems to be deliberate triggering.
If the drug's patent is about to expire, doesn't that mean generics will soon be available and the high-cost problem will be solved through competition?
I wish that were always the case. I know I’ve had a few experiences where the generic was almost as much as the name brand, and one where it actually cost more.
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).
I got curious and started to search out some other reading[0]:
> The pathogenesis of [aquagenic urticaria] AU is poorly understood at this time, and it appears to be mediated in both a histamine-dependent and independent manner. [...] Currently, the first-line therapy for AU is an oral administration of nonsedating, second-generation H1 antihistamines, but many patients may require further interventions to have adequate symptomatic control. In this review, we discuss the diagnostic and management challenges of AU.
"It’s safe, it’s effective – it even works for aquagenic urticaria. This should be a happy ending. But there’s a catch. The asthma drug is currently being used “off-label”; that is, the effectiveness of the drug against urticaria hasn’t yet been demonstrated in a large-scale clinical trial. And most healthcare providers, from insurance companies to the UK’s NHS, simply won’t pay for drugs without one.
This is the problem Rachel encountered back in 2014, when the specialist in Berlin recommended omalizumab. At the moment, the drug would set her back around a thousand euros per month.
But finding enough patients for a trial could be problematic. Aquagenic urticaria affects around one in every 230 million people. By that estimate, there are only 32 people with the condition on the entire planet. “We are a big team here, we see more than 2,000 new urticaria patients every year. And we have three with aquagenic urticaria,” says Maurer.
To complicate matters further, the drug is coming to the end of its patent. With so little time left to make any money out of it – and a handful of potential customers – convincing the company to invest in a trial would be extremely difficult. “I’m not sure that we will see such a trial,” he says. Novartis, who market the drug as Xolair for asthma and other conditions, confirm they have no plans to develop the treatment for aquagenic urticaria. "We believe that the unlicensed use of drugs should be limited to cases where there is an unmet medical need that cannot be fulfilled by licensed medications or as permitted by the regulatory framework designed to protect patient safety," their spokesperson adds. After decades of research to solve the mystery disease, the final hurdle isn’t science, but economics."
Based on the article, we don't even fully understand the mechanism behind the disease. Hard to do gene therapy when you aren't sure what genes are to blame.
There could be epigenetic or environmental factors to blame for a disease.
But even so, assuming this is a genetic issue, proposing gene therapy in this case is putting the cart before the horse. It's like if you had a memory leak or segfault in a 3.4 billion line codebase, but the issue was only reported a few times (out of 7+ billion active users) and you can't replicate it. Obviously, a patch for this issue would be nice, but first you need to find out what's causing the issue.
63 comments
[ 1542 ms ] story [ 2902 ms ] threadFor 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!)
It does suck that there aren't enough people to do proper experimentation for this affliction.
I can't think of an insurance company in the US that'd cover this. Can you?
To be clear though, I'm fine with this - the NHS is for everyone and it should be funded for everyone.
I don't think it is for things "not covered by the NHS". It depends on your level of coverage but typically you would go to the NHS first and then invoke your private coverage when you have a diagnosis in order the eg skip the queue.
When a relative had a heart attack, he was put on a waiting list for a heart bypass - 1 year. When he invoked insurance, he got seen within a month - by the same doctor and in the same facility as it would have been on NHS.
In a lot of instances the private health care system is just paying the public one for advantageous access to services.
In fact it increases your tax costs, because private insurance provided by e.g. an employer is treated as a BIK.
Then while I am on pension I am back on the public system, I am making no contribution but using it most.
That would basically be a system designed to bancrupt the public but lucrative for private insurers.
This comment in a nutshell reveals the ignorance of US consumers. Just because you think something should work the way you want, doesn't mean that's reality.
There is no "health insurance market" in the US, since you can't actually negotiate with any entity in the insurance industry.
Even for most companies, come Jan. 1, they switch providers to the lowest-cost they can find since there is no ability to negotiate with their current provider after the inevitable and compulsory 20%/annum increase.
I find this choice of analogy really interesting, since diving into the pool is like swimming in bleach for everyone else too.
I find it insulting to me as reader. Perhaps they should offer a toggle for it in the user settings.
Media where printing costs are not a major problem (such as magazines) have always included pictures, mostly as an aesthetic choice - to most (if not all) people, graphical elements here and there make the pages simply look more appealing.
I wonder if there could be a similar situation here. Without some sort of image it's difficult to make the page not look empty or sterile.
https://www.joelonsoftware.com/2000/04/06/things-you-should-...
Text-wise his articles are often very interesting though.
> you can ask almost any programmer today about the code they are working on. “It’s a big hairy mess,” they will tell you. “I’d like nothing better than to throw it out and start over.”
> Why is it a mess?
> “Well,” they say, “look at this function. It is two pages long! None of this stuff belongs in there! I don’t know what half of these API calls are for.”
> Before Borland’s new spreadsheet for Windows shipped, Philippe Kahn, the colorful founder of Borland, was quoted a lot in the press bragging about how Quattro Pro would be much better than Microsoft Excel, because it was written from scratch. All new source code! As if source code rusted.
> Back to that two page function. Yes, I know, it’s just a simple function to display a window, but it has grown little hairs and stuff on it and nobody knows why. Well, I’ll tell you why: those are bug fixes. One of them fixes that bug that Nancy had when she tried to install the thing on a computer that didn’t have Internet Explorer. Another one fixes that bug that occurs in low memory conditions. Another one fixes that bug that occurred when the file is on a floppy disk and the user yanks out the disk in the middle. That LoadLibrary call is ugly but it makes the code work on old versions of Windows 95.
They even partner with Getty Images to market their services for them.
https://www.bbc.co.uk/mediacentre/latestnews/2020/bbc-partne...
As an arachnophobe, I find this actually quite abusive as it seems to be deliberate triggering.
Yes, I know what a glass of water looks like, but seeing it together with the caption really enforces the absurdity of her condition.
Failing that why can't we just collect the money to pay for it?
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).
> The pathogenesis of [aquagenic urticaria] AU is poorly understood at this time, and it appears to be mediated in both a histamine-dependent and independent manner. [...] Currently, the first-line therapy for AU is an oral administration of nonsedating, second-generation H1 antihistamines, but many patients may require further interventions to have adequate symptomatic control. In this review, we discuss the diagnostic and management challenges of AU.
[0] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5136360/
The article refers to the British healthcare system.
"It’s safe, it’s effective – it even works for aquagenic urticaria. This should be a happy ending. But there’s a catch. The asthma drug is currently being used “off-label”; that is, the effectiveness of the drug against urticaria hasn’t yet been demonstrated in a large-scale clinical trial. And most healthcare providers, from insurance companies to the UK’s NHS, simply won’t pay for drugs without one.
This is the problem Rachel encountered back in 2014, when the specialist in Berlin recommended omalizumab. At the moment, the drug would set her back around a thousand euros per month.
But finding enough patients for a trial could be problematic. Aquagenic urticaria affects around one in every 230 million people. By that estimate, there are only 32 people with the condition on the entire planet. “We are a big team here, we see more than 2,000 new urticaria patients every year. And we have three with aquagenic urticaria,” says Maurer.
To complicate matters further, the drug is coming to the end of its patent. With so little time left to make any money out of it – and a handful of potential customers – convincing the company to invest in a trial would be extremely difficult. “I’m not sure that we will see such a trial,” he says. Novartis, who market the drug as Xolair for asthma and other conditions, confirm they have no plans to develop the treatment for aquagenic urticaria. "We believe that the unlicensed use of drugs should be limited to cases where there is an unmet medical need that cannot be fulfilled by licensed medications or as permitted by the regulatory framework designed to protect patient safety," their spokesperson adds. After decades of research to solve the mystery disease, the final hurdle isn’t science, but economics."
But even so, assuming this is a genetic issue, proposing gene therapy in this case is putting the cart before the horse. It's like if you had a memory leak or segfault in a 3.4 billion line codebase, but the issue was only reported a few times (out of 7+ billion active users) and you can't replicate it. Obviously, a patch for this issue would be nice, but first you need to find out what's causing the issue.