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https://en.m.wikipedia.org/wiki/Atidarsagene_autotemcel https://en.m.wikipedia.org/wiki/Atidarsagene_autotemcel > The National Centre for Pharmacoeconomics (NC
by jiggawatts 4y ago
https://en.m.wikipedia.org/wiki/Atidarsagene_autotemcel https://en.m.wikipedia.org/wiki/Atidarsagene_autotemcel
> The National Centre for Pharmacoeconomics (NCPE) in Ireland recommends "that atidarsagene autotemcel not be considered for reimbursement unless cost effectiveness can be improved relative to existing treatment."
Wow… instead of a lifesaving cure they recommend the treatment of the symptoms until the kid dies because it’s cheaper.
- sho_hn 4y agoPeople are often surprised by this, but healthcare and insurance systems assign an explicit numerical value to human lives and run with it all the time. https://en.wikipedia.org/wiki/Value_of_life https://en.wikipedia.org/wiki/Value_of_life
- bcrosby95 4y agoAnything dealing with human lives needs to assign a value to it. You don't want to spend $100 billion on something that's just gonna save 1 person. But spending $100 on something that's gonna save 1 person is something pretty much everyone is fine with. Somewhere in the middle is where most people disagree.
- eternauta3k 4y agoSaying yes to one person's expensive treatment is saying no to 4 people's cheap treatment.
- tialaramex 4y agoIt's not that simple. Economically it's an investment. Twenty years ago I had Hodgkins Lymphoma. Obviously the NHS fixed that. This was doubtless quite expensive, it needed a team of experts, expensive chemicals and radiotherapy machinery. But, if they don't they're out a young productive software engineer because Hodgkins kills people, even assuming you're so callous your response is to just immediately put me down like a dog so as to reduce the cost of palliative care or diverting resources from relatives - Whereas since they fixed it that's maybe 30-40 years of economic productivity and ensuing tax income they're getting. Now, obviously not every such intervention is literally profitable in a financial sense, but I chose my case because even boiled down to simply money this actually can make sense anyway. If you agree it made sense to fix me (and I don't see why you wouldn't) then beyond that it's only about value judgements.
- xxpor 4y agoThe world doesn't have unlimited resources. You have to make a call somewhere.
- elil17 4y agoGovernments and non-profits already funded the development of gene therapy. Letting private companies charge money for it and then blocking people who need it from getting it is a policy decision.
- whiddershins 4y agoDoing the procedure has a cost. There must be some pressure to reduce the cost, else it will never reduce.
- elil17 4y agoI agree there needs to be pressure. Why not regulatory pressure?
- sn0wf1re 4y agoWhat sort of regulation? Make it cheaper by x% per year or we stop using it? Doesn't sound that dissimilar to "make it cheaper than the total cost of the current treatment or we won't use it".
- elil17 4y agoI’d just change the “or we won’t use it” to “or your patents go away.”
- pc86 4y agoAnd then instead of reading "that atidarsagene autotemcel not be considered for reimbursement unless cost effectiveness can be improved relative to existing treatment" today, we would have read something like "current regulatory environment precludes research and development expenditures into atidarsagene autotemcel" in some biopharm prospectus a decade ago. You can't have it both ways and preventing people from making money means, not surprisingly, they will be very hesitant to spend money researching those areas.
- Nicksil 4y agohttps://en.wikipedia.org/wiki/Atidarsagene_autotemcel https://en.wikipedia.org/wiki/Atidarsagene_autotemcel
- cameronh90 4y agoWhat if the cost was $100 trillion?
- shadowgovt 4y agoIts sticker price is actually $3.8 million. At that price, it could be administered to every child in the UK with the disease at about the cost of 1 year of the UK's defense budget.
- Gordonjcp 4y agoIt's probably cheaper if you're buying it in that sort of quantity. Three million quid on this, three million quid on that, three million quid over there, soon you're talking about a lot of money. If you buy 1600 doses of it at a time they're going to sharpen the pencil for you.
- mrtksn 4y agoWhat happens if UK requires defense that year?
- Waterluvian 4y agoThe thing that tires me about this old chestnut is that it’s just a shell game and not actually a substantive idea. “Just take money from somewhere else.” It’s akin to saying that we will use the latest AI technology and machine learning to make our value proposition work. It sounds satisfying but it says nothing.
- CraigJPerry 4y agoWhy would you need to take money from somewhere else? This is misunderstanding how money works for a currency issuer.
- Waterluvian 4y agoLol exactly. “Just print more money!”
- hummus_bae 4y agoAnother country where nationalized healthcare is a bad idea.
- blibble 4y agoI think you'll find most insurance policies have a maximum
- nivenkos 4y agoBut healthcare isn't nationalised in Ireland. Was that your point?
- shadowgovt 4y agoNot sure I follow. It's not like a therapy with a sticker price of $3.8 million is more available in countries without nationalized healthcare.
- refurb 4y agoSure it is. Look at the Blue Cross Blue Shield plan for Michigan. It covers a number of gene therapies at a cost of $2.2M for one of them. Not all European countries pay for it. https://www.bcbsm.com/amslibs/content/dam/public/employers/documents/share-resources-employees/pharmacy-program-documents/gene-cellular-therapy.pdf https://www.bcbsm.com/amslibs/content/dam/public/employers/d...
- concordDance 4y agoYou can get private insurance in Europe too.
- refurb 4y agoFor gene therapy? The economics would never work out unless premiums were sky high or the insurance is mandatory or across most of your population. It only works if premiums are spread across a large population so a $2.5M therapy becomes a $1 increase in premium for 2.5M people.
- ls612 4y ago[flagged]
- HlessClaudesman 4y agoI think a full time caregiver of someone incapacitated should have the power to vote on their behalf. This is a big chunk of society, yet seemingly invisible to politicians. Perhaps, if people with disabilities and illnesses couldn't be just ignored as "non voters" they would be more of a priority.
- gambiting 4y agoBut....they can? You can give someone else the power to vote on your behalf if you cannot do it yourself. Unless you mean that if someone is literally unable to make any decisions by themselves their caretaker should be able to vote on their behalf how they think this person would vote? That doesn't strike me as a very reasonable system, you can't know how someone would vote unless they tell you, and to assume you can or should know is irresponsible.
- HlessClaudesman 4y agoYeah I can see there are many sides, as a society we an interest in keeping elections fair, with one person one vote being a good maxim. But consider the case of a parent of a child with profound disabilities, that child is now an adult of voting age. Wouldn't a person with disabilities have an interest win voting out a candidate / party who constantly rails against providing funding for disabled services? Why should anyone be disenfranchised because of their disability? Its still one person one vote, just in this special case two adults two votes.
- gambiting 4y ago>>Wouldn't a person with disabilities have an interest win voting out a candidate / party who constantly rails against providing funding for disabled services? Sure, but the point is, you don't know this - you can only reasonably guess. And to make a vote on behalf of another person, by effectively guessing what they might want, does not sit right with me.
- themaninthedark 4y agoAnd this in turn leads people to be against national health care as they are worried that the government will be the one making the decision that it is cheaper to let people die rather then treat them.
- Gordonjcp 4y agoAs opposed to insurance companies making the decision that it is cheaper to let people die than potentially adversely affect shareholder value by treating them?
- ryeights 4y agoSuch power is already vested in undemocratically governed private insurance companies, no? I can’t imagine any health insurance plan would have covered this treatment.
- TSiege 4y agoExcept that reality is you vote for government, not for the health insurance industry
- CommanderData 4y agoDon't some insurers outright deny cover for chronic or genetic conditions?
- csours 4y agoYes, someone somewhere will be making this decision. It could be insurance, a doctor, nurse, hospital administrator, or family member, or even the affected individual.
- nradov 4y agoIn the US, medical insurers are not allowed to deny coverage for chronic or genetic conditions due to the Genetic information Nondiscrimination Act of 2008 (GINA) and the Affordable Care Act of 2010 (Obamacare). Some treatments may require proof of medical necessity, or require that providers and patients try lower cost options first (step therapy). Rules for life insurers are different and in some circumstances they may deny coverage.
- vkou 4y ago> Wow… instead of a lifesaving cure they recommend the treatment of the symptoms until the kid dies because it’s cheaper. That's the same sort of ethical calculus that goes into deciding the distribution of any life-saving resources. We can always spend more (resources/social capital) to save more lives/years of life. How do you decide where that line gets drawn? Most medical systems decide it by looking at the cost of treatment (Dollars, organs, risks), and quantifying years of quality life gained. If you'd like that bar raised, increase the tax rate/insurance costs. 'Save every life at any cost' is not compatible with a world where you have decide whether your budget goes on a low-ROI, or a high-ROI intervention. 'First come-first-serve' is not compatible with a world where you are optimizing for overall positive outcomes. Do you have any alternative guiding principle for where money in the healthcare system should be spent?
- timerol 4y agoHere's the study: https://www.ncpe.ie/wp-content/uploads/2021/04/Libmeldy-Beneluxa-RG-Joint-Report-Summary-Ireland-Final.pdf https://www.ncpe.ie/wp-content/uploads/2021/04/Libmeldy-Bene... It's worth mentioning that the study in Ireland indicates that the treatment extends life by 14.49 QALYs (average "Total Life-years" moved from 8.92 to 22.74), which is a long way from a cure. If this is truly a cure, and the treated population lives a full life (life expectancy in Ireland is current 82 years, not 23), then this treatment will become cost effective without any change in the treatment or it's cost. The posted article agrees that this is the big open question. > The benefit of the therapy seemed to last several years, but at this point, "it is not yet clear whether it will persist life-long, and extended follow-up is needed," the EMA noted.
- jiggawatts 4y agoThey can't possibly know that the drug extends life to "22.74" years, because it has only been approved for use for the last 3 years! This is like asking for 30 years of Kubernetes experience on a job application. Even if the estimate is accurate, there is a massive qualitative difference between slowly dying horribly for 'x' years and living a normal life for 'y' years. You can't just subtract 'x' from 'y' and come up with a delta and compute based on that. Reminds me of the studies that showed that Tamiflu is ineffective because it only reduced the duration of influenza symptoms by 1/2 a day on average. Yes, that's true, I've taken it myself and the symptoms continued for about the normal period of time. But it reduces the severity massively. It's like a light switch. The most severe flu suddenly turns into the mildest of mild cold-like symptoms in a matter of hours. But... that's hard to measure objectively, so it is not recommended because the according to a metric that doesn't matter it doesn't work. The statistics and metrics in medical papers are woeful, which is why it's commonly accepted that 1/2 of all medical research is false.
- louthy 4y ago> The statistics and metrics in medical papers are woeful Ok, this probably needs some extraordinary evidence … > which is why it's commonly accepted that 1/2 of all medical research is false. The irony
- deleted 4y ago[deleted]
- robocat 4y ago> because it’s cheaper. Compromises always have to be made because the world does not have infinite resources. Unfortunate, but true. One way to allocate resources between all our competing needs is by using money. You can come up with other systems of allocation, however all systems will be unfair and arbitrary in surprising ways. There is always a need to choose between ugly choice A and ugly choice B, because our resources are constrained.
- DennisP 4y agoMaybe they're still negotiating. Article says the UK initially rejected it, then got it cheaper.
- refurb 4y agoOf course, why are you surprised? You have X amount of dollars. You can spend Y percent on healthcare. How do you spend Y to have the greatest benefit? Save 1 patients with a $300,000 gene therapy, or save 1,000 patients with effective treatment for their diabetes. Until we have unlimited resources, that trade off will always be made.
- concordDance 4y agoThe fact that there's a time=money=lives equivalency is kinda unintuitive at first glance, but when you think about it for a bit it will become obvious.