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Hieronymous Alloy posted:Health care is an "impure" public good. https://en.wikipedia.org/wiki/Public_good Like the army, the interstate highway system, internet infrastructure, the postal service, etc., it's just better provided by the government. Oh I'm actually aware of this, I was more so making a joke really.
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Nov 20, 2018 16:47
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Lightning Knight posted:Oh I'm actually aware of this, I was more so making a joke really. my joke detecting circuits appear to be irretrievably damaged lately I blame capitalism
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Nov 20, 2018 16:48
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Yeowch!!! My Balls!!! posted:as Zauper can explain to us, it just wouldn't be cost-effective for insurers to cover these people If you were to put it to a vote and have politicians or the general public decide where to allocate, then these people likely wouldn't be getting treatment either. It's the inherent problem of orphan diseases. The solutions are: - Throw an enormous amount of money and manpower at it and hope that something useful comes out of it. Which has the problems of: You can't do this for every single condition or orphan disease in existence, so you would still end up deciding which research to pursue. A scientist or doctor is not just a replaceable part. Very few doctors or scientists have any clinical knowledge of some of these rare and genetic disorders. You can't just grab every scientist and tell them all to focus on something. There's a strong chance that 95% of the development comes out useless. That requires years or decades long commitments to funding and staffing the effort. If you've been doing it for 20 years do you pull the plug? Some research is practically (in the medical terminology) useless until some other discovery is made down the line, like cloning. - Public and private research overwhelming focuses on foundational research and "mass patient" conditions like diabetes, high blood pressure, and cancer. Some individuals, companies, or labs will pursue an orphan disease treatment, but the vast majority are not. http://www.who.int/mediacentre/news/statements/2018/rare-disease-day/en/ This is what we currently do. The world health organization gives a summary that is short on specifics, but gives you a general idea of the problems with orphan diseases. The source of funding is not the primary issue. Leon Trotsky 2012 fucked around with this message at 17:08 on Nov 20, 2018 |
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Nov 20, 2018 17:05
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Leon Trotsky 2012 posted:If you were to put it to a vote and have politicians or the general public decide where to allocate, then these people likely wouldn't be getting treatment either. the effort and manpower were already thrown at it by the government. a solution was found. the contribution of pharmaceuticals and insurance, in their totality, are setting a price on the grounds it's less profitable to cure the disease than to treat it, and deciding nobody gets it as a result.
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Nov 20, 2018 17:13
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Yeowch!!! My Balls!!! posted:the effort and manpower were already thrown at it by the government. a solution was found. the contribution of pharmaceuticals and insurance, in their totality, are setting a price on the grounds it's less profitable to cure the disease than to treat it, and deciding nobody gets it as a result. They abandoned their European market permit. The E.U. or individual member countries could decide that they would pay for it and someone would manufacture it. But, they are choosing not to. That post was mostly about the problem with orphan diseases as a whole and not this particular instance. No matter where the funding or direction comes from, you will still have to "pick" people who won't get their treatment developed or supplied. The problem is beyond funding for those specific treatments. It's why everyone donates to cancer, diabetes, and alzheimer's research and charities. Because those are the ones that hit the most people and they are the least controversial because they are the least likely to have nothing come out of it at the end. Nobody ever donates to FCY-Delta malformation protein disorder fund. Leon Trotsky 2012 fucked around with this message at 17:19 on Nov 20, 2018 |
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Nov 20, 2018 17:15
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Leon Trotsky 2012 posted:That post was mostly about the problem with orphan diseases as a whole and not this particular instance. No matter where the funding or direction comes from, you will still have to "pick" people who won't get their treatment developed or supplied. whipping out excuses that you know don't apply to own the libs
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Nov 20, 2018 17:21
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Yeowch!!! My Balls!!! posted:whipping out excuses that you know don't apply to own the libs They sadly do apply. The problem with orphan diseases in a fundamental scientific and research logistics problem that exists no matter where the funds come from. I would love for more orphan diseases to be covered. At the very least, more people should at least know that they exist. I did lobbying work to get some orphan diseases covered under the EHB rules in Obamacare, but nobody wanted to do it. Not even Tom Harkin, who was normally a big proponent of underserved medical issues. It's a very similar situation to European governments and the treatment they were talking about. I met people who have conditions that nobody has ever even heard of, so they don't even get the courtesy sympathy offered to someone who says they have cancer. It's very sad. The WHO statement linked earlier lays it out in the best way you can without going into a novel.
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Nov 20, 2018 17:31
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They don't apply in this case because all the work is already done and all the money already spent. Duh.
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Nov 20, 2018 17:50
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VitalSigns posted:They don't apply in this case because all the work is already done and all the money already spent. Duh. R&D stands for research and development. The development part (customized gene therapy for each patient, treatment has shelf life of less than a week, etc) includes delivery. The company abandoned their European market permit. The E.U. and its member countries could decide right now to provide it and it would be manufactured. But, they won't. The delivery and costs associated with many orphan diseases are different than a pill that just needs to be mass produced in the same chemical format, has a shelf life of 2 years, and is used daily by millions of people.
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Nov 20, 2018 17:53
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Leon Trotsky 2012 posted:The company abandoned their European market permit. The E.U. and its member countries could decide right now to provide it and it would be manufactured. But, they won't. Leon Trotsky 2012 posted:The development part (customized gene therapy for each patient, treatment has shelf life of less than a week, etc) includes delivery.  You obviously didn't read the article (duh since you didn't realize the Canadian government researched it), they sold their extra stock to some random patients for a couple bucks, no individual development required. E: quote:Three doses left on the shelf were basically given away. A patient in Italy was treated for 1 euro, and two German patients also received doses for 1 euro each after Dr. Steinhagen-Thiessen asked Chiesi for the leftover product. VitalSigns fucked around with this message at 18:02 on Nov 20, 2018 |
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Nov 20, 2018 17:58
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VitalSigns posted:Because of people like you Gene therapy treatments, which this was, require personalization and patient testing before administering them or you risk immunogenicity. That is a cost and deployment concern that is not present when deciding to manufacture 1 million adderall pills that are chemically the same. Any random person can take any anti-depressant and not become infected with a virus or have their immune system kill them. Gene therapy requires pre-screening and for the person to be compatible to ensure that it does not kill them. If they aren't, then they have to generate a new viral delivery method. quote:Despite limited instances of toxicity, Alipogene tiparvovec patients without proper genetic screening and corrective adjustments to the viral vector were generating neutralizing antibodies, and small defined cytotoxic response. Leon Trotsky 2012 fucked around with this message at 18:10 on Nov 20, 2018 |
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Nov 20, 2018 18:06
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Leon Trotsky 2012 posted:Gene therapy treatments, which this was, require personalization and patient testing before administering them or you risk immunogenicity. Okay well I am going to trust the doctor in the article who said the opposite over the guy who didn't read the article and is lying about what's in it.
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Nov 20, 2018 18:48
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Leon Trotsky 2012 posted:The company abandoned their European market permit. The E.U. and its member countries could decide right now to provide it and it would be manufactured. But, they won't. A market permit and a patent are not the same thing.
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Nov 20, 2018 19:03
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Bonfire Lit posted:A market permit and a patent are not the same thing. Yes, the point is that they were able to sell in Europe and if any E.U. member country wanted to buy it right now, then they could and production could start.
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Nov 20, 2018 19:14
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The solution to people like LT2012 is issuing compulsory licenses: https://en.wikipedia.org/wiki/Compulsory_license
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Nov 20, 2018 19:42
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Leon Trotsky 2012 posted:Yes, the point is that they were able to sell in Europe and if any E.U. member country wanted to buy it right now, then they could and production could start.
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Nov 20, 2018 19:50
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Bonfire Lit posted:That EU countries could buy the patent has nothing at all to do with market permits and your "point" continuously changes to whatever you need it to be to still be able to claim you're right. You seem confused here. An E.U. member country would not be buying the patent. This isn't a public vs. private ideological debate. No matter who is providing the funding, there will be someone making a judgement call about value. It is the inherent problem of orphan diseases and certain biologics or experimental procedures. This issue is not the same as the broader issues in the healthcare sector and consumer pricing. There is no calculus in which the orphan diseases come out as a major priority. Utilitarian: What can help the greatest number of people? Not orphan diseases. Profit-seeking: What is going to generate the largest returns on investment? Not orphan diseases. Public good: What is the most efficient way to spend the public's money to promote the general welfare? Not orphan diseases. The problem with these diseases, no matter where the funding comes from, is that there is fundamental gap between impact and investment. That is literally what makes them "orphan diseases". The question is how do you solve it? Do you just force scientists to pursue inefficient research that might cost billions and yield nothing? Do you invest a large amount of money into the research on the gamble that it pays off and you can collect huge profits? Both of those have major problems and potential longevity problems. The orphan diseases are even further hurt by second order effects caused by this dynamic. If you go into science or medicine, then being the guy who spent 15 years developing a viral vector to cure Abderhalden Kaufmann Lignac syndrome and ended up with nothing usable is not a scenario anyone wants to be in. If you are coming into medicine with the idea that you want to improve as many people's lives as possible, then you are going to want to be the guy that cures cancer or hypertension. The feeds back into medical schools not teaching doctors about these incredibly rare diseases, but is it the wrong call? They need to know a lot of things and 99% of them will never encounter most of them. You have to force inefficiency and consciously target research that might never work out and even if it does will surely help much fewer people than other pursuits. So, how do you make the call? That's why the people with orphan diseases are so screwed, because they will never be the most impactful or highest priority patients. That is a problem that can't be cured through the economies of scale that national healthcare or single-payer bring to other areas of medicine. (USER WAS PUT ON PROBATION FOR THIS POST)
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Nov 20, 2018 20:12
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Leon Trotsky 2012 posted:
It already yielded a cure that's not what broke in this case dummy
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Nov 20, 2018 20:19
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VitalSigns posted:It already yielded a cure that's not what broke in this case dummy it's echoes of talking with evopsych true believers. every mention of observable reality being in conflict with their theory met by a new and more exciting rephrase of "but if that WEREN'T the case-"
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Nov 20, 2018 20:26
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e: you know what, never mind
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Nov 20, 2018 20:38
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I assume there might be a medical thread better for discussing the science behind this stuff - but is there not other things the R&D put into Glybera could be applied to? Surely the gene therapy aspect is huge that they could use those parts of the R&D to get further grants and funding or something to subsidize the cure they did make?
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Nov 20, 2018 20:49
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Cribbed from cspam: Haven't read the article yet, but I reckon those bullshit "medicare extra" plans figure in this.
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Nov 20, 2018 21:13
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Willa Rogers posted:Cribbed from cspam: I thought this was going to be way more interesting. It just says that the health insurance industry doesn't want single-payer. Shocking to nobody. Their "strategy" is very sad and nothing special. They are: - Going to run radio ads to "raise awareness." - Send emails to reporters and politicians every week (lol) detailing how single-payer is bad. - Find studies that show problems with single-payer and try to highlight them. - Point out that some candidates who ran on single-payer have lost elections. This is just a document that lobbyists pass along to their clients or companies show to shareholders every year to prove "how dynamic and influential we are and will be in the coming quarter! I predict it's going to be better than ever!" The one semi-interesting thing is that they say they got a house candidate (who lost) to use their talking points in an interview. But, I don't know how much of that is them trying to hype how effective they are to a client, because there are no other actual "achievements" in the document. Here's the link: https://theintercept.com/2018/11/20/medicare-for-all-healthcare-industry/ If this is the health insurance move against single-payer, then I think single-payer is going to have no major problems. edit: Seriously, if this is your big rhetorical flourish that is the best a hundred million dollar lobbying group can buy, then you're doing something wrong. quote:The group plans to argue that victorious pro-“Medicare for All” candidates couldn’t attribute their success to having supported “Medicare for All” because few Democrats explicitly mentioned the policy in their campaign advertisements. Leon Trotsky 2012 fucked around with this message at 21:35 on Nov 20, 2018 |
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Nov 20, 2018 21:25
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quote:The campaign has worked with advertising agencies to draw up a series of messages to convince select audiences. Several of the messages, categorized as “positive,” are dedicated to educating the public on more minimal reforms that do not include expanding Medicare. Other messages, categorized as “persuasion” and “aggressive,” are designed to instill fear about what could happen if “Medicare for All” passes. Nothing to see here, folks! Just your run-of-the-mill regulatory capture of the "progressive" party.
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Nov 20, 2018 21:36
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Willa Rogers posted:Nothing to see here, folks! Just your run-of-the-mill regulatory capture of the "progressive" party. I don't think "business lobbying groups and conservative Democrats don't favor single payer" rises to the level of regulatory capture. Just read between the lines here. This is a document from a lobbying firm to a client to show why they should keep paying them. Their big move here is to... think about seeing if Tom Daschle (they haven't even spoken to him yet, it's literal brainstorming in a client note, lol) will work for them and to make political contributions. This is not a radical new political strategy and kind of sad that it is the best a professional lobbying group with hundreds of millions in income can come up with.
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Nov 20, 2018 21:41
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Leon Trotsky 2012 posted:I don't think "business lobbying groups and conservative Democrats don't favor single payer" rises to the level of regulatory capture. who said anything about a radical new political strategy? quote:The Partnership strategy echoes the health insurance industry’s campaign to shape the 2008 presidential primary. At that time, the health insurance lobby group known as America’s Health Insurance Plans, or AHIP, tapped the consulting firm APCO to develop an effort to label any government-run insurance option as an existential threat to Democratic political goals. The initiative emerged from a plan to minimize the impact of Michael Moore’s documentary “Sicko,” which was deeply critical of the American health care system. As I said, nothing to see here! Because AHIP got nothing of what they wanted back in 2008 when they were help crafting the ACA: high deductibles, no public plans, unlimited premium costs, ultra-narrow networks, no limits on out-of-network charges to patients, limited annual enrollment, mandates to purchase private insurance, no rules against balance or "surprise" billing, and a medicaid threshold so low that people making $17,000 would be expected to pay up to half their annual incomes toward healthcare. In fact, AHIP was so mad at how its directives were spurned in the final legislation, they hired the woman appointed by Obama to oversee the ACA's implementation at CMS as its executive director a few years later.
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Nov 20, 2018 22:04
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Willa Rogers posted:who said anything about a radical new political strategy? Is your theory that absent AHIP: quote:Fox News pundit John Stossel, conservative think tanks like the American Enterprise Institute, and centrist Democratic groups such as the Democratic Leadership Council, a now-defunct group associated with the Third Way. would have been pro Single-Payer? I'm not seeing what has you so worried or surprised about the fact that health insurance companies oppose single-payer and want to get people on Fox News and buy Youtube ads (lol) to oppose it. That is a very weak document and applies political pressure to none of the relevant parties. It is a firm with no big ideas justifying a paycheck to a client.
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Nov 20, 2018 22:10
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What is it about healthcare that prompts people to go on these tedious sociopathic rants about which humans haven't justified their worthiness to live, as if the problem is a lack of resources and as if resources are currently allocated according to anything like maximum utility. The government spends orders of magnitude more money in projects of no benefit to anybody, we could develop 100 of these lifesaving orphan drugs for the cost of an F-35, money isn't the problem, priorities are.
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Nov 20, 2018 22:46
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I went to Walgreens to pick up a prescription and the lady in front of me was trying to get insulin. She had some issue with Medicaid and they denied her and she was freaking out because her mom's blood sugar was at 240. She left without insulin. 
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Nov 21, 2018 15:47
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Insulin should be like Dialysis where it's covered and fully paid for because you goddamn die without it
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Nov 21, 2018 15:54
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gently caress that, insulin is so cheap to produce it should be free in any pharmacy. It should be as easy to get as condoms.
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Nov 21, 2018 16:10
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Charge anyone who requires excessive payment for insulin with criminal extortion. It's no different from threatening with a gun. "Pay up or die." Like, seriously.quote:836.05 Threats; extortion.—Whoever, either verbally or by a written or printed communication, maliciously threatens to accuse another of any crime or offense, or by such communication maliciously threatens an injury to the person, property or reputation of another, or maliciously threatens to expose another to disgrace, or to expose any secret affecting another, or to impute any deformity or lack of chastity to another, with intent thereby to extort money or any pecuniary advantage whatsoever, or with intent to compel the person so threatened, or any other person, to do any act or refrain from doing any act against his or her will, shall be guilty of a felony of the second degree, punishable as provided in s. 775.082, s. 775.083, or s. 775.084. https://www.flsenate.gov/Laws/Statutes/2011/836.05 There's a slight difference in that the person is already dying and you're threatening to withhold lifesaving treatment, rather than threatening to commit active harm, but we have similar provisions for price gouging emergency supplies in hurricanes and the like. Hieronymous Alloy fucked around with this message at 16:21 on Nov 21, 2018 |
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Nov 21, 2018 16:16
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Lightning Knight posted:I went to Walgreens to pick up a prescription and the lady in front of me was trying to get insulin. She had some issue with Medicaid and they denied her and she was freaking out because her mom's blood sugar was at 240. She left without insulin. That pharmacist could get into huge trouble if this was a technical issue and not that she was no longer enrolled in Medicaid or something along those lines. In potentially life threatening situations with a valid prescription, they are supposed to give you the medication and submit a dispute with Medicaid. You could call CMS or your state HHS over that.
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Nov 21, 2018 16:18
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Leon Trotsky 2012 posted:That pharmacist could get into huge trouble if this was a technical issue and not that she was no longer enrolled in Medicaid or something along those lines. I didn't really know what was going on or what to say and the lady left because she was angry. 
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Nov 21, 2018 16:20
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Hieronymous Alloy posted:Charge anyone who requires excessive payment for insulin with criminal extortion. It's no different from threatening with a gun. "Pay up or die." Like, seriously. This but for any medicine or form of healthcare whatsoever
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Nov 21, 2018 16:20
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Lightning Knight posted:I didn't really know what was going on or what to say and the lady left because she was angry. They might be safer since the lady left because she was angry and not because they sent her away. But, depending on how long they were there and how it played out, that Pharmacist was incredibly dumb. Not only are they potentially (iffy since the lady left on her own out of anger before they technically pursued every option) violating Medicaid rules, but that is a massive loving liability for Walgreens that they absolutely do not want over something that costs them such a small amount. I would at least report them to Walgreens, because they might not technically be violating any Medicaid rules in this situation, but that Pharmacist was dumb and could potentially make the pharmacy liable if there really was just an issue with the computer or something.
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Nov 21, 2018 16:25
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https://twitter.com/ericuman/status/1065255517507985408?s=21 Burn every health insurance company to the loving ground and salt the ashes
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Nov 21, 2018 16:55
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KillHour posted:gently caress that, insulin is so cheap to produce it should be free in any pharmacy. It should be as easy to get as condoms. The retail price for my insulin in 750/mo. Go America I guess
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Nov 21, 2018 17:10
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Azhais posted:The retail price for my insulin in 750/mo. Go America I guess And quarterly blood tests that cost a guy walking in off the street $250, but your insurer has negotiated down to $12 of which you are responsible for $4. Because that's fair to the uninsured
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Nov 21, 2018 17:14
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Rhesus Pieces posted:https://twitter.com/ericuman/status/1065255517507985408?s=21 Did you read the article? This is more of a "if everything goes wrong and they have a database that we just gave them, then would GATTACA be real?" situation that people also worry about for blood donations, genealogy websites, and social media. quote:it’s standard practice for insurers to monitor sleep apnea patients and deny payment if they aren’t using the machine. And privacy experts said that sharing the data with insurance companies is allowed under federal privacy laws. A ResMed representative said once patients have given consent, it may share the data it gathers, which is encrypted, with the patients’ doctors, insurers and supply companies. They have to give consent to send the data. I'd say that they only "sketchy" part is that they told him his old machine would be monitoring, but didn't say whether the new one would be different. The fact that insurers are trying to get FEWER people on them in the first place because of how expensive they are is the real problem. It was mostly being used because the companies rent the machines, provide them to patients, and pay for the machines. But, lots of patients don't use the machines. They check to see if someone has not turned it on for over 3 months and then say that they need to use their machine or pay for it to sit there if they aren't going to use it. quote:studies show that about third of patients don’t use their CPAPs as directed. It's not really crazy to expect people to use the machine that their doctor instructed them to use every night and to send it back or pay for it yourself if you aren't going to use it. (USER WAS PUT ON PROBATION FOR THIS POST) (USER WAS PUT ON PROBATION FOR THIS POST)
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Nov 21, 2018 17:23
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