8 ms·
A woman who is allergic to water (2016)
- dd36 6y agoWow. Even NHS won’t cover off-label that works?
- whatshisface 6y agoToo bad there aren't any NHS competitors.
- mxcrossb 6y agoI’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!)
- lotsofpulp 6y agoNo 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.
- ivraatiems 6y agoRight, because markets where there is competition work so well? I can't think of an insurance company in the US that'd cover this. Can you?
- voldacar 6y agoit's a serious stretch to call the US healthcare system an open market in any meaningful sense of the term
- dredmorbius 6y agoIncomplete coverage, no competition, an addiction factory, and an inability to competently address a widespread health emergency. Quad-win!
- alex64 6y agomy epipen isn't even covered in the united states, competitors won't make a difference :)
- ClumsyPilot 6y agoOfcourse there are - we have private insurance marketin UK, few people need them, many employers provide one.
- lostlogin 6y agoBut then you are paying for both private and public healthcare, so it isn’t really competition.
- ben_w 6y agoGiven the context in this thread is diversity rather than price, that does not matter.
- dfcowell 6y agoIn Australia at least you can claim a tax rebate if you have private health insurance. I imagine the UK would have a similar system.
- Liquid_Fire 6y agoIn 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.
- lol768 6y agoEven in cases where you're using a private GP service and theoretically not costing the NHS anything at all; there's no tax rebate. To be clear though, I'm fine with this - the NHS is for everyone and it should be funded for everyone.
- JetSetWilly 6y ago> 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.
- spiderfarmer 6y agoName the insurance companies in the US that cover this situation and what they cost per month. I’ll wait.
- beefield 6y agoI hope you are not holding your breath as it looks like you are in for a long wait.
- spiderfarmer 6y agoIf he's actually researching he will probably learn a lot. I can wait.
- redis_mlc 6y ago> Too bad there aren't any NHS competitors. 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.
- jahewson 6y agoThere are. Private medical care is available in the UK.
- easytiger 6y agoIf 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.
- deleted 6y ago[deleted]
- thaumasiotes 6y ago> 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.
- hvdfhbj 6y agoI 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.
- saagarjha 6y agoFor 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.
- WilTimSon 6y agoSometimes 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."
- polm23 6y agoThere'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.
- Kerrick 6y agoIf 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?
- michaelmrose 6y agoWhy 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?
- Freak_NL 6y agoBecause 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).
- howlgarnish 6y agoLiability. If they knowingly give the drug for an unapproved use, and something (anything) bad happens, they're on the hook.
- deleted 6y ago[deleted]
- 02020202 6y agotl;dr but since we're 70% water, this is just psychological.
- karmakaze 6y agoI 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. [0] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5136360/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5136360/
- hiyer 6y agoThe article is from 2016. It appears the drug has since been approved for treatment of urticaria - https://www.xolair.com/ciu/why-consider-xolair/about-ciu-treatment.html https://www.xolair.com/ciu/why-consider-xolair/about-ciu-tre...
- gwbas1c 6y ago> first and only therapy in the US The article refers to the British healthcare system.
- doener 6y agoThis is really sad: "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."
- jelliclesfarm 6y agoNot a candidate for CRISPR or targeted gene therapies?
- wsowens 6y agoBased 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.
- jelliclesfarm 6y agoEverything boils down to genes, doesn’t it? Am I wrong?
- wsowens 6y agoThere 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.
- hikerclimber 6y agothought this wasn't possible.