[HN Gopher] Biohackers take aim at big pharma's stranglehold on ...
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       Biohackers take aim at big pharma's stranglehold on insulin
        
       Author : HiroProtagonist
       Score  : 290 points
       Date   : 2021-06-28 13:25 UTC (9 hours ago)
        
 (HTM) web link (www.freethink.com)
 (TXT) w3m dump (www.freethink.com)
        
       | f6v wrote:
       | As someone who had to create transgenic E.coli in a lab, I admire
       | the effort. It's hard to get it right, especially when trying to
       | make bacteria produce stuff for you. However, it feels like a
       | huge step backward. Imagine you couldn't afford to buy a piece of
       | bread. Instead, you need to grow your own grains and build a
       | windmill first. Sounds ridiculous in 2021.
        
         | gentleman11 wrote:
         | My wife bakes bread almost every day and grows her own yeast.
         | She loves it and the bread is fantastic. What is so ridiculous?
        
           | ipsum2 wrote:
           | The parent mentioned growing their own grain, which is
           | substantially more difficult (planting, harvesting, milling)
           | than growing your own yeast.
        
             | dekhn wrote:
             | Let's go back to before real agriculture. 10K years ago
             | People harvested wild grain, processed it, managed to make
             | yeast starter, and produce an edible bread that sustained
             | humanity until we learned how to domesticate it and build
             | the infrastructure to study it until we know how all this
             | works at the molecular level. But they managed to do it
             | without any science or technology.
        
               | ineedasername wrote:
               | 10k years ago they had actually already domesticated
               | crops and weren't reliant (at least not in many places)
               | on finding wild grain.
               | 
               | Regardless, it was all still done with science:
               | Observation followed by trial and error informed by those
               | observations. Maybe not the scientific method formalized
               | by Francis Bacon, but it's still there in the outlines.
        
           | margalabargala wrote:
           | Growing enough viable yeast to bake 10 loaves of bread is
           | orders of magnitude simpler than growing, harvesting,
           | threshing, and milling enough grain to bake 10 loaves of
           | bread.
        
             | rootusrootus wrote:
             | It can as simple as doing nothing. You can start your own
             | sourdough at home completely from scratch, and do nothing
             | but wait for the yeast to show up.
        
               | dekhn wrote:
               | most times the results will be contaminated by bacteria.
               | The knowledge of what was actually going on when you do
               | this was only gained in the past 250 years or so (before
               | that, yeast was known as godisgreat).
               | 
               | In addition to doing it the way you described (put out
               | flour and water in a bowl and wait for it to bubble and
               | smell nice), you can also buy a $100 microscope, collect
               | wild yeast, clean the bactiera off, and grow mass
               | cultures. Sometimes it pays to work at the _last_ step of
               | the industrial, scientific and agricultural revolutions.
        
           | jcims wrote:
           | It's a little more complicated than that. Bread is ingested
           | through a system optimized to absorb nutrients from outside
           | the body.
           | 
           | Insulin must make it into the bloodstream intact, typically
           | through injection. It's also incredibly potent, a unit of
           | insulin dried to crystalline form weighs less than 40
           | micrograms, so it much be administered in a sterile carrier
           | fluid.
           | 
           | Lastly the penalty for overdosing is generally called insulin
           | shock or diabetic hypoglycemia, and 'it is rare but possible
           | for diabetic hypoglycemia to result in brain damage or death.
           | Indeed, an estimated 2-4% of deaths of people with type 1
           | diabetes mellitus have been attributed to hypoglycemia.' [1]
           | 
           | That's with pharmaceutical insulin, not DIY.
           | 
           | 1 - https://en.wikipedia.org/wiki/Diabetic_hypoglycemia
        
           | ChefboyOG wrote:
           | There's nothing ridiculous about the fact that your wife
           | enjoys baking bread.
           | 
           | There's a lot that's ridiculous about bread being so
           | expensive that recreating the entire supply chain in your
           | backyard is the only economically viable option for obtaining
           | it.
           | 
           | The metaphor pretty clearly was not about critiquing baking
           | as a hobby.
        
             | gentleman11 wrote:
             | It's clearly about mocking decentralized home made
             | solutions to problems, and of the people who opt for that
             | approach. It's an insult to every Amish person on earth and
             | to home mechanics who shy away from garages. It's also, by
             | far, the most downvoted thing I've ever posted so thanks
             | for using your other accounts to hit me for my acidic and
             | savagely inappropriate comment
        
               | lotyrin wrote:
               | I'm not sure why you are projecting that, but it's not
               | there.
        
               | SketchySeaBeast wrote:
               | Their point was why are people being FORCED to produce a
               | diabetes bio-hack instead of getting insulin. Neither
               | your wife, Amish people, nor home mechanics are forced to
               | make their own bread instead of buying it - they are all
               | choosing to even though bread is cheap and easily
               | available.
        
               | pitched wrote:
               | Growing wheat and grinding it out into flour isn't
               | something I've ever heard anyone take on as a hobby
               | before. Having all that actually cost less (including
               | time) than buying bread would be a huge achievement!
        
               | dekhn wrote:
               | I imagine the guy who built his own toaster from scratch
               | probably also contemplating rebuilding the entire
               | pipeline to produce the input to the toast. "Step one:
               | acquire the ore. Step two: smelting iron ore..."
               | http://www.thetoasterproject.org/page2.htm
        
               | ineedasername wrote:
               | At that point we're basically talking about Factorio.
        
               | crakenzak wrote:
               | It's clear from your responses that you seriously can't
               | handle logical disagreements to your point on online
               | forums and choose to get offended instead.
               | 
               | The replying comment is right, it's irrational & you're
               | filled with hubris to think that you could replicate
               | world wide supply chains in your back yard. In no
               | universe does growing yeast == replicating a global
               | supply chain.
        
           | [deleted]
        
         | nathanvanfleet wrote:
         | Maybe that's the next big local business idea. Like buying from
         | a local bakery every city can have a local guy growing insulin.
        
         | mkoubaa wrote:
         | I agree with the sentiment but decentralizing and downscaling
         | production is a win for resiliency. This is a good example but
         | others include recycling and power generation have clearer
         | benefits
        
           | f6v wrote:
           | Yes, but what about economies or scale? And the the
           | production is already decentralized. I guess there's more
           | than one plant in the US.
        
             | shkkmo wrote:
             | Those econmies of scale are simply driving up profits for
             | an oligopoly that uses IP laws and acquisitions to extract
             | maximum value from sick people.
             | 
             | We could revoke the IP and thus force these companies to
             | compete on price... but that hasn't happened. Thus the only
             | solution that is making any progress is circumventing the
             | IP and developing an open process.
        
       | KaiserPro wrote:
       | I simply don't understand the healthcare system in the US. Its
       | meant to be a free market, yet insulin costs a ridiculous amount.
       | However Opioids and synthetic opioids are cheap as chips.
       | 
       | To put it into context, In the UK the NHS buy Insulin at <$35
       | 
       | you can see the prices here: https://bnf.nice.org.uk/medicinal-
       | forms/insulin.html They come from the same companies and are
       | produced to the same standard. How can a bureaucratic "socialist"
       | care system get better price, and a much better availability than
       | a "free market" system. (thats rhetorical, I know why)
       | 
       | Given the number of non and under insured, I just don't
       | understand why its not swinging elections.
        
         | fernandotakai wrote:
         | >I simply don't understand the healthcare system in the US. Its
         | meant to be a free market, yet insulin costs a ridiculous
         | amount.
         | 
         | the problem? patents
         | https://www.hopkinsmedicine.org/news/media/releases/why_peop...
        
         | maxerickson wrote:
         | Generic Insulin Lispro is currently ~$50-60 per vial in the US,
         | without any insurance or assistance from the manufacturer
         | (though you do have to understand the system and go to specific
         | pharmacies to get that price).
         | 
         | The reason it's not a big issue in elections is because lots of
         | people don't vote.
        
           | dempsey wrote:
           | And every state administers its own Medicaid system under a
           | different name. Lots of folks don't even realize that their
           | free healthcare is mostly coming from the feds. In AZ, I had
           | to explain this to several friends that depend on AHCCS.
        
         | anonuser123456 wrote:
         | Read 'The price we pay' if you want to understand the US
         | healthcare system.
         | 
         | Most of the 'socialist' countries don't pay for R&D on drugs;
         | US consumers do. They pay a marginal price based on production
         | cost, but almost none of the fixed price investments in
         | efficacy, safety studies etc.
         | 
         | The US system in no way resembles a functioning market. It's a
         | byzantine spider web of regulatory capture, patent abuse, bad
         | incentives and inertia.
        
       | nknealk wrote:
       | Some considerations on manufacturing -- there's a variety of
       | product quality steps necessary to release batches of medicine.
       | The FDA mandates this as part of GMP regulations. These steps
       | help ensure things like:
       | 
       | * How do I know that every vial has the same concentration of
       | insulin each time? That is to say 1 unit from a vial today and 1
       | unit from another vial is going to have the same dosing.
       | 
       | * How do I know the insulin is purified? If there's any host cell
       | protein in the vial, that could be immunogenic and cause bad side
       | effects.
       | 
       | * How do I know that the formulation of insulin in the vial won't
       | degrade on me at whatever storage condition is stated?
       | 
       | I realize that these tests make up only a small fraction of the
       | price, but there's a lot of value to purchasing medicine from
       | regulated sources. I'm not against upstart competition against
       | big pharma, but I worry that you might literally kill someone if
       | you don't include these product quality steps in your process.
        
         | shkkmo wrote:
         | > there's a lot of value to purchasing medicine from regulated
         | sources. I'm not against upstart competition against big
         | pharma, but I worry that you might literally kill someone if
         | you don't include these product quality steps in your process.
         | 
         | Where are you getting this from? This goal of this isn't to
         | have every diabetic brewing insulin in their garage so they
         | evade the IP police in a distrubuted fasion. The goal is to
         | create open IP needed for creation, purification and quality
         | control that will allow labs around the world to create insulin
         | in keeping with local regulations.
        
         | tomaszs wrote:
         | It makes sense. On the other hand pharmaceutical companies make
         | mistakes also, just on a bigger scale. Also I imagine that when
         | it will be easier to set up insulin small scale production,
         | than more scientists will be able to do innovate and improve
         | the process.
        
       | Seattle3503 wrote:
       | > These companies essentially have a monopoly on the market;
       | there is simply no competition to drive the price down.
       | 
       | The word for this is oligopoly.
        
       | [deleted]
        
       | nom wrote:
       | Can someone explain in layman's terms why there is no competition
       | on this market? As insulin is so cheap to produce, why can't I
       | just get my own product approved and sell it?
        
         | Thebroser wrote:
         | There are crazy patents throughout the entirety of the insulin
         | production pipeline. Some of these being extremely absurd such
         | as patenting the pH of a buffer for specific protocols! I
         | volunteer for the Open Insulin Foundation on/off when not too
         | focused on my research project and it's basically how can we
         | come up with a roadmap to making this decentralized insulin
         | without violating any existing patents. An added layer of
         | difficulty is like other have mentioned, engineering Ecoli to
         | produce the homolog as well as developing from scratch the
         | devices for extraction and purification (think hplc). Again,
         | these need to be made from scratch as to not violate any
         | patents. At least in the U.S., this is why there is no
         | competition in the market. There is also a significant price
         | barrier as you need to bring up your production to GMP
         | standards which means you need a state of the art clean room
         | and multiple roles to supervise the production of the product
         | every step of the way.
        
           | narrator wrote:
           | Can't you just make Insulin like they made it 20 years ago
           | using expired patents?
        
             | katbyte wrote:
             | yes you can, but that means less profits, and america puts
             | up with it - https://www.iheart.com/podcast/105-behind-the-
             | bastards-29236...
        
           | politician wrote:
           | We figured out how to patent everything in software by just
           | adding "with a computer system" to it, so I'm sure we could
           | figure out how to patent novel combinations of these
           | procedures by mixing in "in microgravity".
        
           | nom wrote:
           | Thank you, this is insightful and explains a lot.
           | 
           | For everyone interested, clickable link
           | https://openinsulin.org/
           | 
           | Very noble cause, I appreciate it.
        
           | slim wrote:
           | it's basically how can we come up with a roadmap to making
           | this decentralized insulin without violating any existing
           | patents
           | 
           | This is how patents are supposed to foster innovation. Wasted
           | effort reinventing the wheel
        
           | cadr wrote:
           | I wonder if a better effort would be to challenge the patents
           | rather than try to go around them.
           | 
           | (Not that I don't think what you are doing is awesome,
           | because I do.)
        
       | clarkrinker wrote:
       | Every time this stuff comes up it feels like we focus on the
       | politics and not the people with diabetes.
       | 
       | If you or your kid or your friends have Type 1 and are struggling
       | to make your insulin out of pockets please, please, please call
       | the Eli Lily hotline and get the copay card. They've dropped the
       | monthly cost for Humalog to $35.
       | 
       | Don't ration. Work the system. https://www.humalog.com/savings-
       | support
        
         | fencepost wrote:
         | Ah, but are those assistance programs available to people on
         | Medicare or Medicaid? I know a diabetic on Medicare so I've
         | watched ads and lots of the ones that mention how little your
         | copay can be seem to have a little note at the bottom of the
         | screen "for patients on commercial insurance."
        
           | clarkrinker wrote:
           | The Part D reforms from this year cap insulin costs at [1]
           | $35 a month. You can setup your social security benefit to
           | have it automatically deducted
           | 
           | The premiums for part D in Washington State are about $40 a
           | month [2]
           | 
           | Most Medicaid recipients don't pay out of pocket for insulin.
           | 
           | [1] https://www.medicare.gov/coverage/insulin [2]
           | https://www.insurance.wa.gov/what-does-medicare-
           | prescription... [3]
           | https://www.commonwealthfund.org/publications/issue-
           | briefs/2...
        
             | fencepost wrote:
             | Thanks, I'll pass that along to her. I think the insulin is
             | a new thing this year, so it's possible she's not on a Part
             | D plan in the "insulin savings model."
        
         | chefkoch wrote:
         | Wich is around the list price you pay for two weeks of insulin
         | in germany.
        
         | nceqs3 wrote:
         | Every drug company gives away their drugs for free to people
         | who can't afford it in the US. It's sad that not enough people
         | take advantage of patient assistance programs.
        
           | Clubber wrote:
           | Got a link for this with some details? What does "can't
           | afford," mean, how regularly is this available, how much of a
           | hassle is it, etc.
        
           | edge17 wrote:
           | I'm curious, but what does "can't pay" mean? Does it mean the
           | drug cost 100%+ of your income? 10% of your income?
        
             | km3k wrote:
             | Hard to say, but many drugs can go over 100%. Some could be
             | several hundred percent or more depending on your income.
             | https://www.reuters.com/article/us-vertex-pharms-
             | fda/vertex-...
        
             | 48309248302 wrote:
             | Sometimes essential medication costs USD $100,000 per year
             | or more.
        
           | DaiPlusPlus wrote:
           | > Every drug company gives away their drugs for free to
           | people who can't afford it in the US
           | 
           | I don't believe this is universally true though. For example,
           | patent-encumbered novel delivery mechanisms for existing
           | (generic) drugs, like Concerta. The drug company has nothing
           | to gain by maintaining the administrative infrastructure for
           | patient-assistance for drugs like that.
           | 
           | Another example are personalised therpaies, such as
           | immunotherapy treatments - which cost so much because (as I
           | understand it, please correct me if I'm wrong) they require
           | individual experts to develop the personalized antibodies and
           | whatnot - unlike with mass-produced medication
           | pills/tablets/capsules that have negligible marginal cost: a
           | company isn't going to give away a $100k therapeutic drug for
           | free because it still is going to cost them $50k+ (numbers
           | just made up btw).
        
             | [deleted]
        
           | epmaybe wrote:
           | This is apologist thinking at best, intentionally misleading
           | at worst.
           | 
           | You are correct that companies do have patient assistance
           | programs. What you're leaving out is that this applies to a
           | small subset of people that usually have to be denied
           | federal/state insurance, not have any other kind of
           | insurance, and make less than 4x federal poverty level.
           | 
           | additionally, they rarely provide a lifelong supply. Imagine
           | being a diabetic and novo nordisk, who makes most of the
           | insulin types on the market, only gives you a four month
           | supply.
           | 
           | Oh wait, thats exactly the terms of their patient assistance
           | program.
        
           | ineedasername wrote:
           | No, they really don't. Some don't offer much of anything.
           | Many of those end up providing benefits for the poorest of
           | the poor, but if you're a little above that you're out of
           | luck. Also if you have something like Medicare you can hit
           | certain phases in coverage where you have to pay a much
           | larger part of the cost. Being on any government program
           | disqualifies you from most of these discount programs, so if
           | you're on an expensive Rx you can still be stuck paying a few
           | hundred $$ a month-- more than many can afford.
           | 
           | These discount programs aren't some big secret people don't
           | know about. I see that argument thrown out in defense of high
           | prices but it simply isn't true. Every doctor prescribing
           | drugs knows about them and tells their patients about them.
           | If people are going without necessary medication because they
           | don't know about a discount program then they are extreme
           | outliers.
           | 
           | These discount programs are simply marketing & lobbying tools
           | used to give politicians cover when they all continue to
           | ignore meaningful healthcare reform.
        
           | bingidingi wrote:
           | Many people simply don't know about them! I grew up poor and
           | the amount of work that goes into finding and using some
           | services is ridiculous. We bought a house using some
           | assistance programs and at a couple points were speeding
           | across the city to get paperwork in by sone deadline no one
           | told us about (luckily we had a car!).
           | 
           | Not to mention that services like foodstamps can be
           | unreliable... I've probably spent hours of my life holding up
           | checkout lines because my card didn't process...
           | 
           | not having money is one thing, but being poor also
           | obliterates your time if you use various services...which in
           | my experience is worse... you're always tired and agitated.
           | Someone is always messing up your paperwork, because of
           | course civil servants are often underpaid and overworked
           | themselves.
        
             | distribot wrote:
             | I had a similar upbringing. All the hours of my childhood
             | in the local health and human services offices and WIC
             | nutritional centers turned me off of civil servants and
             | bureaucrats. It felt like they were always condescending
             | and snippy, or pretending my parents' English was way
             | harder to understand than it is, or just delighting in
             | telling us our stuff was out of order.
             | 
             | Looking back they were probably just overworked and
             | exhausted, but man.
        
               | bingidingi wrote:
               | I felt the same for a while too, but then I met someone
               | that happened to work for child services. These are some
               | caring and empathetic people working for peanuts and they
               | aren't really treated well by anyone, management and
               | clients alike. This person in particular hated the work
               | but didn't want to quit for fear of letting their clients
               | (children) down.
               | 
               | People blame bureaucracy, and maybe there's some truth
               | there, but if these people were treated half as well as
               | many tech workers are then maybe we could actually start
               | making progress against the stereotype of miserable
               | experiences.
        
       | Benjamin_Dobell wrote:
       | My 3 year old daughter was recently diagnosed Type 1. Soon after
       | her diagnosis I discovered a _heap_ of articles about the Open
       | Insulin Foundation. I was even on their website 24 hours ago.
       | However, for the life of me I can 't find anything "open" about
       | the Open Insulin Foundation.
       | 
       | Could someone please point me in the right direction where I can
       | read _anything_ with more substance than a news article quoting
       | an interview?
       | 
       |  _EDIT_ : Just to clarify. We're extremely fortunate that we're
       | in Australia. Insulin is affordable/subsidised here, my
       | daughter's CGM (and sensors) are free, and anything else we need
       | is heavily subsidised too. I've no intention of biohacking
       | _anything_ to do with my daughter 's Type 1.
       | 
       | I'm asking the above mostly because I'm curious. Admittedly I
       | find it a bit scary that I know so little about the manufacturing
       | of something that is 100% vital to my daughter's survival. I'd
       | like to know more.
        
         | Natsu wrote:
         | I don't know about this place mentioned in the article, but
         | there's a similar orginazation at https://cheapinsulin.org/
         | that you can look into.
        
           | 6502nerdface wrote:
           | TFA blames "big pharma's stranglehold" for high insulin
           | prices, but interestingly the cheapinsulin.org explanation
           | [1] seems to be much more about "big insurance", with pharma
           | companies basically forced to kow-tow if they want their
           | products to be covered.
           | 
           | [1] https://cheapinsulin.org/high-insulin-prices
        
             | tashi wrote:
             | Their claim is that if the pharma companies lowered the
             | cost of insulin but then refused to give rebates to
             | insurance companies for it, the insurance companies would
             | stop covering insulin for diabetic patients? And they're
             | using a diagram created by a pharmaceutical trade group to
             | explain this? I'll be honest: I'm skeptical.
        
       | dempsey wrote:
       | Maybe Mark Cuban's company can produce it:
       | https://costplusdrugs.com/
        
       | Blahah wrote:
       | Pretty cool, but it's a problem with the law and needs to be
       | fixed in law.
        
         | [deleted]
        
         | holstvoogd wrote:
         | If you wait for that, all diabetics will be dead probably...
        
           | Pokepokalypse wrote:
           | "Don't worry; we'll make more." - The US food industry
        
             | cadr wrote:
             | I'm pretty sure they don't make the Type-1's.
        
         | anonbcpolitics wrote:
         | Previous guy tried, but the new "Big guy" nixed the EO before
         | it could go into effect.
         | 
         | https://www.federalregister.gov/documents/2020/12/23/2020-28...
         | 
         | Feel free to link any biased news article or Politifact telling
         | me how it wouldn't have mattered or wasn't that effective.
         | That's a lie, it capped the prices, but at least ask yourself
         | if doing nothing is better, or worse, cancelling an action that
         | did something. Then ask why they did it. Just like many other
         | reversals it wasn't for you, it was for Pharma buddies. They
         | say one thing and do another.
        
         | adamrezich wrote:
         | it was (going to be) but then the new guy reversed the previous
         | guy's decision
        
         | throwaway4china wrote:
         | Previous guy tried, but the new "Big guy" nixed the EO before
         | it could go into effect.
         | https://www.federalregister.gov/documents/2020/12/23/2020-28...
         | 
         | Feel free to link any biased news article or Politifact telling
         | me how it wouldn't have mattered or wasn't that effective.
         | That's a lie, it capped the prices, but at least ask yourself
         | if doing nothing is better, or worse, cancelling an action that
         | did something. Then ask why they did it. Just like many other
         | reversals it wasn't for you, it was for Pharma buddies. They
         | say one thing and do another.
        
         | whereshunter wrote:
         | Previous guy tried, but the new "Big guy" nixed the EO before
         | it could go into effect.
         | https://www.federalregister.gov/documents/2020/12/23/2020-28...
         | 
         | Feel free to link any biased news article or Politifact telling
         | me how it wouldn't have mattered or wasn't that effective.
         | That's a lie, it capped the prices, but at least ask yourself
         | if doing nothing is better, or worse, cancelling an action that
         | did something. Then ask why they did it. Just like many other
         | reversals it wasn't for you, it was for Pharma buddies. They
         | say one thing and do another.
        
       | ggm wrote:
       | As an observation, The UK, USA, Canada and Australia are all in
       | the top 10 for type-1 diabetes incidence in the <14yo population,
       | along with Finland, Sweden, Saudi Arabia, Kuwait, Norway and
       | Denmark.
       | 
       | Only the USA imposes private health cost burdens on the diabetics
       | (from my quick scan of national health info on the web)
        
       | deeviant wrote:
       | I really wish this would be a higher priority for the current
       | class of billionaire philanthropists: open source science.
       | 
       | Medical research guided by the idea of preventing disease rather
       | than creating expensive life-long treatments, and prioritizing
       | the diseases that cause the most amount of suffering rather than
       | present the best opportunity for profit. And not just medicine,
       | but just about any industry could benefit.
        
         | bfrink wrote:
         | You mean like this billionaire philanthropist?
         | https://chanzuckerberg.com/science/programs-resources/open-s...
        
         | pope_meat wrote:
         | Wall Street Smart Genius types have long held that curing
         | disease is bad business, managing symptoms over the entire
         | lifetime allows them to extract more capital out of the cattle.
         | 
         | So, if you're looking to cure something you're going to
         | struggle to find funding.
         | 
         | Don't worry though, the economy will survive.
        
           | failuser wrote:
           | Charging millions for a cure is a also a viable option. See
           | Spinraza vs Zolgensma.
        
           | lotsofpulp wrote:
           | I wonder how the Hep C cures, COVID vaccines, shingles
           | vaccine, HPV vaccines, and other cures got funding over the
           | past 2 decades.
        
             | nceqs3 wrote:
             | People love to bash big pharma, until they get cancer...
        
             | Maken wrote:
             | Public funding.
        
             | wizzwizz4 wrote:
             | Grants and government funding, mostly. But then companies
             | get patent monopolies on production because... reasons.
        
               | lotsofpulp wrote:
               | Yes, I do take issue with the government granting
               | monopolies to private entities with taxpayer funded
               | research. But not all of the funding for all the
               | treatments I mentioned, which are clearly cures and not
               | meant to bleed people until they die, came from
               | government.
               | 
               | Sometimes the pendulum swings too far towards cynicism.
        
           | JumpCrisscross wrote:
           | > _Wall Street Smart Genius types have long held that curing
           | disease is bad business, managing symptoms over the entire
           | lifetime allows them to extract more capital out of the
           | cattle_
           | 
           | Nobody tell the multibillion dollar biotech industry...
           | 
           | And in case it needs to be pointed out, no, cures are
           | massively profitable. If someone has a cure for a presently
           | untreatable disease you will get money, you will make money,
           | everyone will make more money and everyone will be better
           | off.
        
             | shkkmo wrote:
             | > everyone will make more money and everyone will be better
             | off.
             | 
             | Not the people who are currently making bank off of
             | palliative care for that ailment. This absolutely creates
             | perverse incentives that, while not ubiquitous, are hardly
             | uncommon.
        
         | [deleted]
        
       | E8L3i wrote:
       | Math is pretty simple if you have 3-4 producers off essential
       | product protected from external competition by patents. In this
       | case better to avoid competition and increase price 10x than
       | compete in hope to increase market share maybe 2x-3x.
        
       | DoreenMichele wrote:
       | So this seems to be about the DIY biology rather than body
       | hacking.
       | 
       | https://en.m.wikipedia.org/wiki/Biohacking
       | 
       | I don't know if body hacking can help with Type I diabetes but
       | diet and lifestyle can certainly help with other forms of
       | diabetes.
        
       | andrewfromx wrote:
       | this is a great story, about how to get around an obstacle in a
       | creative way.
        
       | ch4s3 wrote:
       | This is sort of meta, but it's cool to see Free Think popping up
       | here. It's a great publication that I think would really be of
       | interest to this community.
       | 
       | More germane to the article, it will be interesting to see what
       | happens over the next 10 years as bio-tech becomes more
       | accessible to hacker types and hobbyists.
        
       | slt2021 wrote:
       | Why not allow patients to buy generic insulin from overseas (from
       | India for example) ?
       | 
       | If I could just you know, ask a friend of mine to fly to India
       | and bring a monthly supply of cheap India made generic of
       | Humalog, that would be great, right?
       | 
       | and if insurance company kicks in a few bucks for me, that would
       | drive down the cost of care for insurance company as well
        
         | xf1cf wrote:
         | Same reason you "can't" do that with textbooks.
         | 
         | The whole reason it's cheap is the vast majority of the cost is
         | shouldered by the west. If you were able to execute this
         | arbitrage (and you should be able to but can't legally) you
         | would quickly find prices would lower slightly in the west and
         | rise dramatically elsewhere.
         | 
         | It's all profiteering. By preventing price discovery they make
         | a boatload of profit even after writing down the losses on
         | "foreign aid".
        
       | sparrish wrote:
       | This is bogus.
       | 
       | Wal-mart sells insulin for $24.88 a vial without prescription
       | currently.
       | 
       | It's only the newer 'guchi' insulin brands that are crazy
       | expensive. Stuff from 1996 that is compared to in this article is
       | actually cheaper than it was in 1996 (adjusted for inflation).
        
         | pluto7777 wrote:
         | Goodrx shows lispro generic $48.85 per vial. Humalog 'guchi' is
         | $142.55. If you're fortunate enough to have diabetic
         | retinopathy and can't read the tiny print, the larger kwikpens
         | are only $270.28. Lets not even get into the real guchi brands.
        
         | elliekelly wrote:
         | This is like saying a car and a bicycle are equivalent means of
         | transportation. Sometimes a bike is the right solution for some
         | people and a bike is usually better than nothing but it's
         | really not fast enough to be a practical solution for most
         | people's daily needs.
         | 
         | Edit: Perhaps high speed internet vs dial-up would be a better
         | analogy to spare us the comments about how bikes are actually
         | better than cars...
        
         | minitoar wrote:
         | it's "Gucci", like the luxury brand
        
           | lotsofpulp wrote:
           | Funnily enough, also a "luxury" brand.
        
         | burkaman wrote:
         | It's not branding, the newer insulin is significantly different
         | and better for almost every patient.
         | https://diabetesstrong.com/walmart-insulin/
         | 
         | It's likely not what your doctor prescribed, it doesn't last as
         | long, it requires you (or your young children) to eat on a very
         | specific schedule, it can't be used with an insulin pen or
         | insulin pump, it's just all around a worse and less effective
         | treatment.
        
           | jart wrote:
           | When were these newer insulins invented? Are they a recent
           | thing? Was it the case that twenty years ago, "Walmart"
           | insulin was the only insulin?
        
             | jimrandomh wrote:
             | 1996. https://en.wikipedia.org/wiki/Insulin_lispro
        
           | sparrish wrote:
           | Novolin is available as an insulin pen. I use it twice-a-day
           | and it's available at the prices specified.
        
           | gruez wrote:
           | Seems like everything is working as intended? A corporation
           | invests money to develop a better product, and the government
           | gives them a 20 year monopoly on it so they charge a premium
           | and recoup their investment. As a patient if you want to pay
           | the premium for it, you can get the better product, otherwise
           | you can still stick with whatever walmart's selling. It's
           | worse, but it's not any worse than what you'd had if the
           | company didn't come along and invented the better product.
        
             | DerpyBaby123 wrote:
             | That's not what is happening. It has nothing to do with a
             | patent monopoly or recouping any investment:
             | 
             | FTA: >In 1996, a vial of Humalog produced by Eli Lilly cost
             | $21. Today, it's priced at $324 despite the cost of
             | production remaining steady.
             | 
             | >Rising costs are nothing new. Insulin prices tripled from
             | 2002 to 2013, and doubled between 2012 and 2016. To put
             | this into perspective, in 1996 a vial of Humalog produced
             | by Eli Lilly cost $21. Today, it's priced at $324 despite
             | the cost of production remaining steady.
             | 
             | If everything is working as intended, it begs the question,
             | what institution intended for patients to die from
             | rationing insulin[0], and why is the USA ok with that
             | institution's intention?
             | 
             | [0]https://www.ontrackdiabetes.com/live-well/diabetes-
             | managemen...
        
               | lotsofpulp wrote:
               | If it was developed in 1996, the patent protection would
               | have expired by now. If the cost of production was
               | "steady", then the question is why is a competitor not
               | jumping in to make and sell something that would earn
               | them a huge profit margin?
        
               | reddiky wrote:
               | https://www.hopkinsmedicine.org/news/media/releases/why_p
               | eop...
        
               | DerpyBaby123 wrote:
               | Do you doubt it was developed in 1996? Do you have
               | evidence that the cost of production has significantly
               | risen?
               | 
               | Otherwise, you seem to be repeating the old economics
               | joke:
               | 
               | "The young economist looks down and sees a $20 bill on
               | the street and says, "Hey, look a twenty-dollar bill!"
               | Without even looking, his older and wiser colleague
               | replies, "Nonsense. If there had been a twenty-dollar
               | lying on the street, someone would have already picked it
               | up by now.""
        
               | lotsofpulp wrote:
               | When there is a claim that there exists an arbitrage
               | opportunity worth billions of dollars, I would consider
               | it common sense to consider why has no one claimed the
               | arbitrage opportunity yet.
               | 
               | The world has many very smart people spending many hours
               | working very hard to find these opportunities, so the
               | likelihood of it just sitting there like a $20 bill on
               | the street, and not being picked up, seems quite small.
               | 
               | I do not know the answer myself, so I am interested in
               | finding out. reddicky posted this:
               | 
               | https://www.hopkinsmedicine.org/news/media/releases/why_p
               | eop...
               | 
               | which sort of answers it:
               | 
               | >Biotech insulin is now the standard in the U.S., the
               | authors say. Patents on the first synthetic insulin
               | expired in 2014, but these newer forms are harder to
               | copy, so the unpatented versions will go through a
               | lengthy Food and Drug Administration approval process and
               | cost more to make. When these insulins come on the
               | market, they may cost just 20 to 40 percent less than the
               | patented versions, Riggs and Greene write.
               | 
               | So it looks like there is some expensive expertise
               | involved and investment into R&D that needs to be done.
        
               | pimeys wrote:
               | Although... I needed to buy a vial of the newest fast
               | insulin in Spain last year without an insurance. One vial
               | was 28 euros, which is much less than people in US have
               | to pay.
               | 
               | The insulin in question is Lyumjev from Eli Lilly.
        
               | DerpyBaby123 wrote:
               | Yes there is expertise and capital costs involved, which
               | make it not an arbitrage play. It is more like a cartel,
               | which seems to explain what is going on here, with the 3
               | insulin producing companies all fixing their prices
               | together (at least in the US)
               | 
               | In theory there is 'nothing' stopping another company
               | from coming along, even a group of Biohackers may try to
               | do something - I wonder if that's been done... :)
        
               | nceqs3 wrote:
               | This is an incredibly stupid comment. Net price in
               | Humalog has decreased since 2014 [0]. The PBMs jack up
               | the list price so they can get their fat rebates.
               | 
               | [0] = https://www.cnbc.com/2019/03/25/eli-lilly-
               | discloses-pricing-....
        
               | lotsofpulp wrote:
               | Eli Lilly's profit margin is double digit, usually around
               | 20%. Managed care organizations (insurance companies),
               | which own the PBMs, have profit margins of ~5% or less.
        
               | nceqs3 wrote:
               | That is a nonsense talking point from the industry. They
               | use passthrough revenue to distort their profit margin.
               | Express scripts is closer to 15% and CVS is closer to
               | 10%.
               | 
               | See https://www.fiercehealthcare.com/payer/facing-
               | criticism-pbms....
        
               | lotsofpulp wrote:
               | CVS net profit margin is in the 2% to 3% range:
               | 
               | https://www.macrotrends.net/stocks/charts/CVS/cvs-
               | health/pro...
               | 
               | Cigna purchased Express Scripts in Mar 2018, and has
               | profit margins of 3% to 5% over the last couple years.
               | 
               | https://www.macrotrends.net/stocks/charts/CI/cigna/profit
               | -ma...
               | 
               | If these PBMs are making lots of profits, then they are
               | simply subsidizing losses elsewhere in the MCO. The total
               | costs paid for insurance premium plus out of pocket costs
               | by the end user in the US would not be affected.
        
               | nceqs3 wrote:
               | You are not addressing my main point which is that these
               | MCO's distort their "net margin" stat using accounting
               | tricks. And yes PBM's are INCREDIBLY profitable. Express
               | scripts made 4.5 billion in net income in 2017. They have
               | never produced a drug that has saved a life.
               | 
               | PBMs are important but they should not be able to put a
               | gun to these pharma companies heads because they control
               | the formulary.
               | 
               | CVS net margin includes their retail business. You can't
               | compare AWS's margin to Walmart's e-commerce margin.
        
               | lotsofpulp wrote:
               | I am not addressing it, because I do not see any further
               | evidence of distortion of an MCO's net profit margin
               | other than what this article claims. Nor would it matter
               | to me unless some MCO executives are smuggling cash out
               | of the country or something.
               | 
               | As a customer, it does not affect me.
               | 
               | In the healthcare business, the flow of money is:
               | 
               | Individual -> MCO (insurance company) -> healthcare
               | providers and drug manufacturers
               | 
               | What does it matter to the individual what portion of an
               | MCO is earning what profit if the net profit margin of
               | the whole MCO is 5% or less? They are obviously not left
               | with a lot of money, their employees are not known to be
               | lavishly compensated.
        
               | gruez wrote:
               | That doesn't seem too strange when you consider that
               | those two types of companies have different operating
               | models. A drug company is in the business of taking
               | relatively cheap goods and converting them to very
               | expensive goods, in other words adding a lot of value. A
               | insurance company/PBM is mostly in the business of
               | skimming a percentage off transactions.
        
               | lotsofpulp wrote:
               | It is not strange, but it also contradicts claims about
               | managed care organizations earning tons of money. It is
               | not a business you go into to get super rich.
        
               | nceqs3 wrote:
               | LMFAO. Express Scripts (the biggest PBM) was bought for
               | 67 billion! They have never saved a patient life but are
               | bigger than most pharma companies.
        
               | lotsofpulp wrote:
               | That sounds irrelevant to my point that MCOs do not make
               | a lot of profit.
        
             | burkaman wrote:
             | Yes it is working as intended, the argument is that those
             | intentions are inhumane. Can you think of any medical
             | treatments that were developed without the promise of 20
             | years of limitless profits? I can.
        
               | gruez wrote:
               | > Can you think of any medical treatments that were
               | developed without the promise of 20 years of limitless
               | profits? I can.
               | 
               | This sounds like it's responding to a strawman.
               | Proponents of the patent system aren't claiming that zero
               | innovation would happen without patents, just that it
               | would be much less. In other words:
               | 
               | No patent system: only inventions from altruistic
               | inventors
               | 
               | Patent system: inventions from altruistic inventors _and_
               | profit-focused inventors.
        
               | burkaman wrote:
               | Let's say corporations were only promised a 10 year
               | monopoly instead of 20. Do you think their business would
               | collapse, or would they keep trying? If profit-focused
               | inventors could still be motivated by a 10 year horizon,
               | then that extra 10 years only benefits corporate
               | executives and kills patients. So, is the patent system
               | as limited as possible while still encouraging
               | innovation? Obviously not, because pharma companies
               | routinely direct billions of dollars in profit into stock
               | buybacks instead of research or any other actual
               | investment. They can easily afford to make less profit.
        
               | gruez wrote:
               | >Do you think their business would collapse,
               | 
               | It would depend on the project's margins and/or sunk
               | costs. A project that had very little invested in it or
               | is a breakout success might we able to weather a 50% cut
               | in exclusivity period, but a marginal product might not.
               | Most of the already developed drugs are probably going to
               | be fine, assuming that the financing for them was already
               | secured.
               | 
               | >or would they keep trying?
               | 
               | For the projects at the margins? most certainly. That is
               | not to say all private drug development would, stop. If
               | some sort of unpatented-but-super-cheap-to-perfect-but-
               | still-not-patented drug showed up it might still be
               | developed, but in aggregate I'd expect drug development
               | to drop significantly.
        
               | burkaman wrote:
               | I am arguing that there are no marginal projects at
               | current profit levels, and that's why they can spend
               | billions on stock buybacks. There is a point that
               | lessening patent protections would cause companies to cut
               | back, but we are not at that point.
        
             | lotsofpulp wrote:
             | But that does not make for emotion inducing tweets.
        
             | OriginalNebula wrote:
             | Do you think a gross profit margin of 93% is fair?
        
               | lotsofpulp wrote:
               | Define fair and unfair. If it was so "unfairly"
               | lucrative, I would have to ask why everyone does not
               | invest in pharma? Why are tech companies where much of
               | the VC funds land?
               | 
               | Perhaps it is because there a huge amount of risk
               | involved?
        
         | hef19898 wrote:
         | Or, you know, public health care. But I digress.
        
         | foxyv wrote:
         | The hard part is getting doctors to offer prescriptions for the
         | cheaper brands as an alternative. A lot of doctors will
         | prescribe the most expensive drug simply because they believe
         | or know that it is better in some way without regard to it's
         | cost.
         | 
         | It's changed a lot recently as doctors have become more aware
         | of the cost of these drugs. But you still have to self advocate
         | for less expensive drugs. Less savvy people often have trouble
         | getting transparency into drug costs. Often even the doctors
         | can't get a straight answer on pricing and insurance coverage.
        
           | lotsofpulp wrote:
           | It has been many years since pharmacies have been allowed to
           | substitute brand name medications with generic medications.
           | In fact, doctors have to write "dispense as written" if they
           | want the patient to only get the brand name medication they
           | prescribe.
           | 
           | Additionally, managed care organizations (MCOs, commonly
           | known as insurance companies) do not pay for brand name
           | medications just because a doctor prescribes them. If the MCO
           | is aware of a generic option, then they will only pay for the
           | generic or they will ask the doctor for a "prior
           | authorization" to justify the use of a brand name medicine
           | (such as the generic version not working).
           | 
           | The pediatricians I have visited in recent years even have
           | the MCOs' formulary available for the patient in their
           | systems, so they can see which medicines need a prior
           | authorization and which do not so there is no time wasted on
           | figuring out what the MCO will pay for without prior
           | authorizations.
        
           | sparrish wrote:
           | But you don't need a prescription...
        
             | foxyv wrote:
             | True! However doctors often don't know this or simply don't
             | think to mention it. In addition, self medicating with OTC
             | insulin can lead to poor outcomes. With proper training and
             | care it can be a powerful tool for uninsured patients.
             | However, insulin can be extremely dangerous leading to ER
             | visits and insane hospital bills.
             | 
             | Every time I try to wrap my head around this stuff. How to
             | fix the problems with our current system. I keep coming
             | back to socialized or single payer health care.
             | 
             | Sure the current system works okayish for people like me.
             | Insured and employed. But for my friends and the people I
             | meet on the streets or the grocery store it's a nightmare.
             | There is real suffering and death caused by no access to
             | adequate health care. Even basic preventative stuff like
             | diabetes care and checkups is missing.
             | 
             | https://khn.org/news/you-can-buy-insulin-without-a-
             | prescript...
        
           | throwaway0a5e wrote:
           | > A lot of doctors will prescribe the most expensive drug
           | simply because they believe or know that it is better in some
           | way without regard to it's cost.
           | 
           | This is so obnoxiously common across every profession.
           | 
           | People are willing to piss away other people's money on "the
           | best" without even telling them what the options are.
        
         | myelin wrote:
         | Type 1 diabetic here. Managing T1D even with the "Gucci"
         | insulins (I use Novolog and have tried Fiasp) is still a huge
         | pain in the butt; you have to give yourself a dose of insulin a
         | fairly precise amount of time before eating, and accurately
         | judge how much you're going to need, which is half science and
         | half wild guesswork. My per-meal dosage requirements vary
         | randomly from month to month -- a dose that would be fine one
         | month is either inadequate or deadly on another month, and the
         | only way to tell if you've got it right is to obsessively
         | monitor your blood sugar.
         | 
         | And that's with the $700/vial insulin... the $25/vial stuff is
         | stone age technology by comparison; you have to take it twice a
         | day, and then eat at two specific times afterwards, or you'll
         | go hypoglycemic (unconscious or maybe dead hypoglycemic, not
         | just the feeling-a-bit-tired kind that people who don't use
         | insulin are familiar with).
         | 
         | The situation right now is that the best and most expensive T1D
         | technology, even the various "artificial pancreas" solutions,
         | still gives you nothing like the experience of a normal
         | pancreas. It would be really nice if the Walmart insulin were a
         | viable long term solution for the cost problem, but
         | unfortunately the negative health effects of older insulin tech
         | are considerable :(
        
           | maxerickson wrote:
           | The no-direct-cost PBMs price generic Humalog at $50-$60 now.
           | 
           | Generic Novolog is also ~$55 at Walgreens (more at other
           | places).
        
           | giles7777 wrote:
           | Have you tried low-carb eating? I've been doing it for years
           | and it seems to be an easier method then insulin(type2
           | borderline when I started, so not exactly the same).
        
             | pimeys wrote:
             | When you eat lots of fat and protein as a T1, you just get
             | a slowly rising glucose that needs insulin and is harder to
             | control compared to carbs with less fat.
             | 
             | T1 is really complex even with a low carb diet, if you
             | don't only eat vegetables, but meatier food.
        
               | myelin wrote:
               | Yeah, T1 is pretty much just a pain whatever you do. Low
               | carb does make it quite a bit easier, and I imagine would
               | pretty much be the only safe way to eat if you were using
               | a non-rapid insulin.
               | 
               | Unfortunately (doctor's orders) I also have to cut back
               | on the cholesterol, which seems to be very high in all my
               | favorite low-carb foods :( It's a constant experiment; it
               | may turn out to make more sense to eat more fat but take
               | statins, but I need to wait a bit longer and see how my
               | lipids look with the current diet.
               | 
               | (BTW I'm actually doing fine -- pretty decent control/A1C
               | -- but I had to rant in response to the Walmart insulin
               | suggestion above!)
        
               | pimeys wrote:
               | Some other things that raise your glucose and you need
               | insulin:
               | 
               | - waking up, liver produces glucagon
               | 
               | - stress at work, hormones going wild... including
               | glucagon
               | 
               | - weather changes, when it is cooler you need more
               | insulin
               | 
               | - you get sick. 2-3x insulin for me
               | 
               | - liver just having a normal glucagon production, that
               | needs insulin without you ever eating anything
               | 
               | Nice that you have your A1c in control. Mine is 5.8%
               | without too many hypos after 26 years of having T1. The
               | tech I need for this costs a fortune without insurance,
               | but at least I can finally live a normal life without
               | nasty surprises every day.
        
           | sithlord wrote:
           | Have you looked into the Warsaw Calculation of calculating
           | insulin? I did it for awhile and pretty interesting. Only
           | real issue is its pretty inconvenient, requires breaking up
           | doses more. But it also takes into account for fats and
           | proteins into the insulin calcuation. I dont remember what,
           | but say your carb ration is 1:10, you would calulate a
           | protein as maybe 1:25 and fat as 1:30 (theres some assigned
           | value is the point iirc - dont use these numbers )
        
         | hooande wrote:
         | this is very true. prices of name brand insulin need to come
         | down, but there is a low cost option available for those that
         | need it
        
           | cestith wrote:
           | Patient outcomes for the insulin aspart pens and the vials of
           | generic insulin at Walmart are so different that many doctors
           | refuse to prescribe the cheap stuff except as a very last
           | resort.
           | 
           | There's no simply substituting. These are two different
           | brands of a generic statin pill or something. Although it's
           | all insulin, these are very different drugs. The dosages for
           | the same insulin in the same patient can vary, and the
           | calculations or charts for what to take when vary across
           | types of insulins. The handling instructions vary. There's
           | different patient training for a pen vs. a vial and syringe.
        
             | sparrish wrote:
             | Novolin is available as a pen without prescription. Costs a
             | bit more ($45 for 5 pens).
        
         | Jeff_Brown wrote:
         | A friend had insurance problems for years and often had to use
         | Walmart insulin instead. He's now going blind, and his doctors
         | suspect that's why. </anecdote>
        
         | [deleted]
        
         | sithlord wrote:
         | This is so incredibly wrong - and trying to claim something you
         | know obviously nothing about is hilarious.
         | 
         | The different between NPH (regular insulin) (maybe R too, not
         | sure??) sold by walmart and Fast Acting insulins (Novolog,
         | Humalog, Apidra) is massive.
         | 
         | Fast acting insulins start working at about in about 30 minutes
         | and "peak" at like 2 hours, and may slowly have some effects
         | for another 1-2 hours.
         | 
         | NPH on the other hand, starts working at ~2 hour mark and
         | continues to work slowly until peaking at like 6 hours and
         | slowly degrades away, that means its in your system for
         | something like 9 hours - trying to meal plan around multiple
         | doses of that is unsafe at best.
         | 
         | R is slightly better but still remains and slowly peaks closer
         | to 4 hours.
         | 
         | These are obviously GREAT IF and only IF you dont have access
         | to fast acting. I applaud Walmart for giving access to these,
         | as they are way better than nothing.
         | 
         | source: Type 1 diabetic
        
           | nceqs3 wrote:
           | The net price on Humalog has gone down since 2014. The PBMs
           | are the ones who distort list prices.
        
             | lotsofpulp wrote:
             | The PBMs are mostly owned and operated by the managed care
             | organizations (insurance companies). The insurance
             | companies have profit margins of less than 5%.
        
               | nceqs3 wrote:
               | This is not true and just an industry talking point from
               | the PBMs. They use revenue tricks to hide their profit
               | margin.
               | 
               | See https://www.fiercehealthcare.com/payer/facing-
               | criticism-pbms...
        
               | [deleted]
        
               | lotsofpulp wrote:
               | My information is from 10-K filings with SEC, and my
               | statement is referring to net profit margins, which are
               | what they are. Unless there is massive fraud going on,
               | managed care organizations are not earning massive
               | profits. If their PBM divisions are, then they are simply
               | subsidizing the insurance division, but it would make no
               | difference to people. The total expense for premium plus
               | out of pocket expenses would not change, it would just
               | shift from one to the other.
        
               | nimish wrote:
               | > Unless there is massive fraud going on
               | 
               | That is exactly what is happening, and it's legal. It's
               | very easy to hide profits and move them around.
        
               | secabeen wrote:
               | One big element is that a lot of large companies and non-
               | profits run their insurance programs as self-insured.
               | They pay the direct costs of the medical care of their
               | insureds, and keep the annual premiums the entire
               | employee-base pays. The "insurance companies" are paid a
               | percentage of the total revenue/claims as an
               | administration fee, so they have incentives to push the
               | overall amounts paid up, not down. Self-insuring
               | eliminates the profit overhead of the insurance
               | companies, but screws the incentives.
        
               | lotsofpulp wrote:
               | There are quite a few big insurers (better known as
               | managed care organizations) competing for business, so
               | the incentives are there to limit expenses so they don't
               | have the most expensive premiums.
        
             | sithlord wrote:
             | This is probably true - and I am not here to point fingers
             | - but I will say that the insulin manufacturers are at some
             | fault too, they do just enough to keep renewing their
             | rights to their insulins every time they come around.
        
               | lotsofpulp wrote:
               | You cannot renew a patent in the US. They get a new
               | product patented, but anyone is still free to come along
               | and make the older one. However, I bet there is a ton of
               | expertise and cost required with doing that, and that is
               | what is stopping others.
        
               | sithlord wrote:
               | they "renew" by "improving" their existing product enough
               | to make it obsolete, and to get a new patent. Per the
               | article below this has been happening since 1923
               | 
               | https://www.hopkinsmedicine.org/news/media/releases/why_p
               | eop...
        
               | lotsofpulp wrote:
               | That is better described as a new patent. The product for
               | the patent that expired is expired, and can be made by
               | others.
        
           | TheFreim wrote:
           | Would it be possible to get a limited amount of the fast
           | acting stuff for unpredictable situations and then normally
           | use the "cheap" stuff? I don't know how this works so I would
           | like some info from someone who seems to know.
        
             | sithlord wrote:
             | Not likely, also lets not forget - as a Type 1 diabetic,
             | you also take long acting insuling (unless you are on a
             | pump). So, for example, a pump uses only fast acting
             | insulin - and it gives a small amount (known as "basil")
             | every 5 minutes (+/- depending on pump).
             | 
             | Whereas, if you use pens (or from a vial) with direct
             | injection, you also take a long acting insulin (levemir,
             | Lantus, etc) once or twice a day (they are supposed to last
             | 24ish hours but often people find splitting their total
             | daily dose up into morning and night has better results).
             | And these insulins cost even more than the fast-acting
             | stuff.
        
               | minitoar wrote:
               | I thought it was "basal", not "basil".
        
               | sithlord wrote:
               | That's mobile autoformatting for ya, you are correct. I
               | would correct, but edit limits...
        
             | reddiky wrote:
             | Possible, sure, but not ideal. The "fun" thing about T1
             | diabetes is that every meal becomes an unpredictable
             | situation based on exercise, sleep, stress, etc etc.
             | 
             | Slightly exaggerated, but only slightly: Imagine you could
             | only drink water 6 hours before you got thirsty, but if you
             | drank too much you might pass out (at any point 2-6 hours
             | from now) or if you drank too little you're doing major
             | damage to your body.
             | 
             | Really the only way to manage with that kind of insulin is
             | to live a very, very low carb lifestyle. Its doable, but it
             | limits your variety and leaves you prone to other potential
             | issues.
        
           | sparrish wrote:
           | I do know what I'm talking about. Also diabetic.
           | 
           | Yes, there are different insulins and Novolin is an
           | intermediate-acting insulin like you describe and available
           | at those prices.
        
       | nimish wrote:
       | It'd be much better for the world if one of the tech billionaires
       | spent the money on a biosimilar insulin that could undercut this
       | cartel.
       | 
       | It's disgusting that people in america die for lack of an
       | essential drug.
        
       | HarryHirsch wrote:
       | Insulin is a solved problem, in first-world countries the sale
       | price is fixed and there's public healthcare.
       | 
       | But in America you are supposed to take "personal responsibility"
       | for your own health and biohack your way ouf of type 1 diabetes?!
       | Srsly?
       | 
       | This s a political, not a scientific problem. Call your
       | congresscritter.
        
         | moomin wrote:
         | I mean, it wouldn't be the first time someone has tried to
         | solve America's political problems with tech.
        
           | anchpop wrote:
           | Solving america's problems with tech has a pretty good
           | success rate. We tried addressing covid with social solutions
           | (social distancing, self-quarantine, etc) and it was
           | generally a complete failure in comparison to the
           | technological solution (mrna vaccinations)
        
             | moomin wrote:
             | Congratulations on ignoring the qualifying adjective so
             | that you can look like you've constructed a counter-example
             | without actually managing it.
        
         | bko wrote:
         | Price controls don't work. This is a solved problem and
         | understood by nearly all economists. They lead to over/under
         | production, huge waste, less efficiency and regulatory capture.
         | 
         | The question is why no one is calling for price controls for
         | other products that are produced in a relatively free market.
         | Then ask yourself whats different about the market for insulin
         | that prevents price competition.
         | 
         | Using "fixed" prices to control costs is like using "fixed"
         | thermostat readings to control global warming.
        
           | tsimionescu wrote:
           | The way price controls are achieved for medicine in the first
           | world is through negotiation between the state public
           | Healthcare system and pharma companies. This actually,
           | provably works, and has worked for decades, and is much more
           | efficient than in the US in fact - both in terms of
           | healthcare outcomes, and Healthcare costs.
        
             | bko wrote:
             | I guess you have a lot more faith in "state public
             | Healthcare system". Many comments were about how corrupt
             | the politicians that led to this system were, so I imagine
             | they would be equally as corrupt when they're "setting
             | prices".
             | 
             | The alternative would be to allow people to break the third
             | party payer system and allow people to buy and import drugs
             | from whomever they want. You can do this now on the grey
             | market, but it would be great if it were legalized. Then
             | you can probably get it for the same price as any other
             | country, probably even lower. If you want, you can have the
             | state cut every insulin user a check for $10 a year or
             | whatever it would cost in a free market
        
         | birdyrooster wrote:
         | Found your problem:
         | 
         | "African American adults are 60 percent more likely than non-
         | Hispanic white adults to be diagnosed with diabetes by a
         | physician."
         | 
         | Given that the middle class is very white and employed with
         | insurance coverage, it virtually doesn't affect white people.
         | Our politics takes black people's votes for granted and don't
         | do anything for them.
        
           | armatav wrote:
           | The insulin price is that high through political/regulatory
           | capture. It costs barely anything to make.
           | 
           | Not every problem has it's root in division.
        
             | throwaway0a5e wrote:
             | You're not wrong but the fact that the problem is allowed
             | to persist certainly something to do with "people with
             | enough spare f*ks to give to be politically active" being
             | mostly unaffected by the problem.
             | 
             | IMO it's more helpful to look at this through an economic
             | lenses than a race one. T2 diabetes is very much a poor
             | person's disease.
        
           | throwaway0a5e wrote:
           | >Our politics takes black people's votes for granted and
           | don't do anything for them.
           | 
           | It's worse than that. If they sufficiently pandered to them
           | to the point of actually solving their problems then they
           | wouldn't be able to take those votes for granted, so they'll
           | never solve their problems.
        
             | TeeMassive wrote:
             | Black Votes Matter.
        
           | wwweston wrote:
           | There's people in at least one party who talk about problems
           | like this, and given that party is the only one that has
           | taken any kind of health care policy seriously for longer
           | than the lifetime of this forum, and has at least some modest
           | achievement to show for it during the narrow window they've
           | had essential control of national institutions, there's
           | reason to take that at face value.
           | 
           | And while various poll access restriction measures are an
           | injustice one could almost think is intentionally targeted at
           | black people, I imagine those obstacles aside they'd be as
           | free and capable of conscientiously assigning their votes as
           | anyone else.
        
             | luffapi wrote:
             | Are you talking about the Democratic Party? They are _more_
             | responsible for the extreme cost of healthcare in the US
             | than any other political faction. Mandatory insurance,
             | COBRA payouts... Did you know Gretchen Whitmer's dad was
             | the CEO of BlueCross?
             | 
             | I say this as a leftist: the Democratic Party is the party
             | of the health industrial complex.
             | 
             | https://www.jacobinmag.com/2021/01/joe-biden-public-
             | option-h...
        
               | wwweston wrote:
               | > They are more responsible for the extreme cost of
               | healthcare in the US than any other political faction
               | 
               | I await the explanation of your model revealing the
               | drivers of healthcare costs and connecting them to
               | predominately Dem responsibility with baited breath, nigh
               | weeping for hope of policy-capable leftists in the
               | meanwhile.
               | 
               | > Mandatory insurance
               | 
               | You know that's how socialized insurance works at one
               | level or another, right?
               | 
               | > COBRA payouts
               | 
               | Is this a mantra or a point?
               | 
               | > Did you know Gretchen Whitmer's dad was the CEO of
               | BlueCross?
               | 
               | This is _definitely_ not a point.
               | 
               | > the party of the health industrial complex.
               | 
               | As long as we consider approach healthcare primarily as
               | an industry, yeah, there's going to be industrial
               | interests tangled up with it. Should we do it some other
               | way? Maybe. In which party do you think that conversation
               | is even possible?
        
               | luffapi wrote:
               | What on earth is "socialized insurance"?
               | 
               | The Democrats are the party who put massive amounts of
               | effort into derailing the only viable candidate to argue
               | for public healthcare.
               | 
               | Maybe you don't care about keeping predatory insurance
               | companies afloat with COBRA payouts, or forcing healthy
               | people to pay tens of thousands of dollars to insurance
               | companies, but plenty of people do.
        
               | wwweston wrote:
               | > What on earth is "socialized insurance"?
               | 
               | Sigh.
               | 
               | Look. I appreciate passion for the topic. I _absolutely_
               | care about this too. I probably spend waaaay more time
               | than a layperson should reading about healthcare problems
               | and policy. Like a lot of other people here on an
               | engineering forum like this, I know the power of
               | approaching things as their own kind of system.
               | 
               | And it kinda looks like you don't yet. That's something
               | I've no doubt you _could_ fix, but you 'd have to want
               | it. Maybe even enough to google the term "socialized
               | insurance." Or understand that when healthy people pay
               | into risk pools... that's what insurance is.
               | 
               | > The Democrats are the party who put massive amounts of
               | effort into derailing the only viable candidate to argue
               | for public healthcare.
               | 
               | Presumably you're talking about Sanders. I encourage you
               | to talk to his office while he's _not_ running about
               | other people who are supportive and enthusiastic about
               | public healthcare efforts. There are plenty. Arguably not
               | enough: if they 'd had few more Senators to get past Joe
               | Lieberman in 2010, Medicare-for-all-who choose would have
               | been a reality then. As it was the ACA was a mixed but
               | significant policy victory.
        
               | luffapi wrote:
               | Health insurance is a _commercial_ industry. There is
               | absolutely nothing socialized about it. The CEOs of these
               | companies are getting paid tens of millions of dollars.
               | They are INCs. They are not socialized in any way shape
               | or form.
               | 
               | They _do_ have regulatory capture, mostly given to them
               | by the Democratic Party.
        
               | wwweston wrote:
               | > Health insurance is a commercial industry.
               | 
               | I can't tell whether you're saying "Health insurance in
               | the US is a commercial industry right now" or "there's no
               | such thing as health insurance that is not commercial."
               | 
               | The latter statement is not true. Medicare for all would
               | be socialized insurance, as would any single payer plan.
               | There are other kinds of socialized insurance you can
               | find in other countries.
               | 
               | The former statement is mostly true with notable
               | exceptions, so we'll assume that's what you mean. You may
               | not be aware there _is_ socialized insurance in the US,
               | though: Medicare and other state programs (and again, the
               | _vast_ majority of Democratic officeholders supported
               | expanding access to that to everyone in 2010 via what was
               | called the  "public option" at the time, unfortunately
               | they needed every last D Senator and Lieberman held out).
               | There are also some non-profit private insurers.
               | 
               | > these companies are getting paid tens of millions of
               | dollars. They are INCs.
               | 
               | The money flowing through these companies is _not_ the
               | problem. Getting paid to provide valuable services is not
               | a problem. Even if you had a magic wand that you could
               | wave that made Bernie king and M4A a reality, you would
               | still need to employ people to source revenue for the
               | general insurance fund, provide good financial
               | stewardship over it, manage relationships with competent
               | providers, provide service to people like you and I, etc
               | etc. You 'd have to pay all those people. Like Medicare
               | already has to (and hires private parties to help).
               | 
               | It's likely that entirely socializing insurance would cut
               | down on overhead (and certainly on any profit taking),
               | but the thing is... that's already been limited. By who?
               | Well... these Democrats you're suggesting are somehow
               | primarily responsible for nurturing insurers. Where did
               | this happen? The Affordable Care Act required insurance
               | companies to reveal how they spend consumer premiums, and
               | spend _80%_ of those premiums on care and efforts to
               | improve quality of care. What companies can take in
               | operating expenses and profits is limited _by law_ to
               | 20%.
               | 
               | Did you know that? If you didn't, why are you so
               | confidently holding forth on this topic? If you did, why
               | are you insisting on repeating the line that Democrats
               | don't care and in fact are responsible for _increasing_
               | expenses and capture of revenue?
               | 
               | > They do have regulatory capture
               | 
               | They have representation and influence in a democratic
               | system. Arguably too much? Yeah. What's your plan for
               | that?
               | 
               | > mostly given to them by the Democratic Party.
               | 
               | Again, you're welcome to lay out your model of how the
               | democrats are responsible. If it's really limited to
               | "other people in the party thought they'd make a better
               | candidate/President than Bernie", though, you might want
               | to see if you can come up with something stronger. And
               | while you're at it, maybe start to admit _at least to
               | yourself_ that maybe you have some more to learn about
               | this topic.
        
               | luffapi wrote:
               | > _Again, you 're welcome to lay out your model of how
               | the democrats are responsible._
               | 
               | Simple, prior to the ACA I was able to cover my health
               | expenses out of pocket. I'm healthy and literally went to
               | the doctor 3 times in a decade. After being forced _by
               | the ACA_ to buy unneeded and unwanted health insurance, I
               | ended up paying  >10k /year for literally nothing.
               | 
               | I've since paid so much in health insurance that I could
               | have covered my own cancer treatments, out of pocket. I
               | have received _nothing_ for that $100,000+ dollars.
               | 
               | Add to that the "marketplace" with limited time windows,
               | limited competition, the inability to get insurance from
               | another location...
               | 
               | These were all Democrat initiatives that I lived through.
               | 
               | Then, _twice_ the Democratic Party fought tooth and nail
               | to kill M4A. Biden literally said he would never
               | implement it. I'm no fan of the GOP, but when it comes to
               | healthcare costs, no one is worse than the Dems.
        
               | sremani wrote:
               | Look at the Health insurance stock after Obamacare was
               | passed - they all sky rocketed.
        
               | luffapi wrote:
               | As did the cost of healthcare. Also look at the health
               | insurance stock when Biden was officially nominated.
               | 
               | Edit: source
               | 
               | https://www.cnbc.com/2019/05/20/cramer-bidens-2020-bid-
               | is-se...
        
           | spywaregorilla wrote:
           | Diabetes rates for blacks is 11.7% vs. 7.5% for whites. That
           | is a ~60% increase, but it's hardly an issue that only
           | affects black voters.
        
             | pmichaud wrote:
             | Also worth noting that it's 11.7% of about 14% vs 7.5% of
             | about 76%, so in absolute terms there are way more white
             | diabetics than black diabetics.
        
         | coliveira wrote:
         | Congress has been bought by big pharma. There is nothing the
         | American people can do at this point other than revolting on
         | the streets.
        
           | pm90 wrote:
           | I mean, that's not nothing. Maybe not revolt, but organize,
           | pressure sitting politicians and encourage better candidates
           | to run.
           | 
           | Americans vilify their politicians and then expect that
           | somehow really "good" people will get into that profession. I
           | don't get it...
        
             | coliveira wrote:
             | What I mean is that traditional avenues for change have
             | been closed by the pharma industry lobby. It is not very
             | different from the situation with the oil industry. The
             | traditional political system has been corrupted by these
             | industry forces, which support both parties.
        
         | dv_dt wrote:
         | The production cost of insulin is incredibly low. The pricing
         | on it in the United States is systematic criminal manslaughter.
        
           | skohan wrote:
           | What's the actual situation there? I have read that cheap
           | insulin for example is available at WallMart, but for some
           | reason the price of insulin seems to be a huge issue.
        
             | chiefalchemist wrote:
             | The situation is that Type 2 Diabetes has raised the demand
             | for insulin. More demand raises prices.
             | 
             | The thing we can't talk about without risking cancellation
             | is that nearly all Type 2 Diabetes is preventable. In other
             | words, the choices of the many have a significant negative
             | impact on those (i.e., Type 1'ers) who don't really have a
             | choice.
        
               | dekhn wrote:
               | the increased demand for insulin is not why the price is
               | higher.
               | 
               | Insulin is made in massive facilities in large batch
               | runs. Making 5X to 10X is basically cost of materials,
               | which haven't really increased enough to justify the
               | price increase.
               | 
               | This is (mostly likely) a rent-seeking situation where a
               | few providers who are allowed in the market are milking
               | it for all the profit they can.
        
               | chiefalchemist wrote:
               | > This is (mostly likely) a rent-seeking situation where
               | a few providers who are allowed in the market are milking
               | it for all the profit they can.
               | 
               | That is also known as demand. They do because they can.
        
               | skohan wrote:
               | Do you have a source on the scarcity claim? My
               | understanding was that insulin is incredibly cheap to
               | produce.
        
               | chiefalchemist wrote:
               | Never claimed scarcity. Only that as demand has increased
               | - and it has significantly - so has price. It's basic
               | economics. Unless there are additional economies of scale
               | from that multiple then prices are going to increase.
               | This isn't about insulin. It's simple economics.
        
               | chiefalchemist wrote:
               | Down voted (faux cancelled) as expected. For stating fact
               | and truth? God bless you.
        
               | Teknoman117 wrote:
               | the EU has twice as many diabetics as the United States
               | yet they have no "shortage" or "demand" related problems.
               | 
               | Our situation has nothing to do with demand and
               | everything to do with corporate greed. Many western
               | European countries empower their governments to set upper
               | bounds on the costs of medication to reduce the ability
               | of pharma-bros to make disgusting amounts of personal
               | wealth off the suffering of others.
        
               | mgarfias wrote:
               | Our food system is sure rigged to make us fat. But then,
               | in my case, what was it that triggered the t2d? Was it
               | the family genetics (both parents are t2d in their old
               | age), the over abundance of sugar in the std American
               | diet, the stress caused by abusive relationships (parents
               | suck, plus ex wife made my life a living hell), or the
               | adrenal tumor?
               | 
               | I'll never know and I'm stuck with it.
        
               | chiefalchemist wrote:
               | Two of three you have control over. Some might even agrue
               | epigenetics says three of three.
               | 
               | Diet. Exercise. Etc. All known to change T2D.
        
               | hourislate wrote:
               | I think we all understand that Type II is preventable but
               | I don't think that's the main focus here. There are
               | plenty of folks who have Type I that can't afford Insulin
               | and have to ration it causing harm and additional costs
               | in healthcare. It's slow mass murder for Type I diabetics
               | who can't afford their medicine. If you believe that it
               | is a supply and demand issue why does the same Insulin
               | cost 80% less in a country like Canada and before you say
               | it's subsidized, it isn't. An American can buy it for
               | substantially less if they can get a prescription from a
               | Canadian doctor.
        
               | chiefalchemist wrote:
               | > There are plenty of folks who have Type I that can't
               | afford Insulin and have to ration it causing harm and
               | additional costs in healthcare
               | 
               | Exactly. The preventable T2D is driving up demand (read:
               | prices) for both T1D and T2D.
               | 
               | I don't know about Canada. I do know about supply and
               | demand. We all do. In the context of healthcare it makes
               | no sense that ppl abuse their health and then expect
               | prices to fall.
        
               | hourislate wrote:
               | What if I were to tell you the the Insulin for Type II
               | diabetes is $35 at Walmart and the Insulin for Type I is
               | $380-$500. By your reasoning shouldn't it all be
               | expensive?
               | 
               | What you fail to consider it that the company that
               | controls the particular type of Insulin that Type I
               | diabetics require is charging 80% less in Canada than in
               | the USA with everything else equal.
               | 
               | Do you get it?
        
             | mgarfias wrote:
             | There's different kinds. IIRC the cheap stuff and Walmart
             | is just that, cheap. It's fast acting, and varies in how it
             | reacts in the body.
             | 
             | Our real issue here is that there is absolutely no
             | incentives to control costs.
             | 
             | You'd think our ins companies would do it, but I'm
             | practice, they end up negotiating sweet deals with the drug
             | manufacturers. say med X @ $1000/mo msrp, but the ins
             | companies negotiate it down to $400/mo. The drug company
             | makes out like a bandit, and the ins people get kick backs
             | for buying from the drug co, and passes on the costs to the
             | insurance buyers.
        
               | RHSeeger wrote:
               | > It's fast acting, and varies in how it reacts in the
               | body.
               | 
               | I believe they offer R (short acting / 2-5h), N (medium),
               | and L (long acting / 24h). The problem with the older
               | insulins isn't so much that they're faster, it's that
               | they're less "specific" (from my experience). A newer
               | short acting insulin (Apidpra, etc) has a spike in the
               | 15-30 minute range and the spike is steep and the tail
               | (while up to 5 hours) is low. Whereas R peaks in the
               | 30m-1h range and the peak is low and the tail is much
               | higher. As such, you need to plan ahead much better for
               | your eating. It's frustrating, but not horrible. The N
               | and L have similar problems (L is the reverse, where you
               | want a tail equal to the spike, but it isn't).
               | 
               | The newer insulins a just much more convenient and
               | require a lot less planning of what you eat and when...
               | and not as close an eye on your blood.
        
               | HideousKojima wrote:
               | If that's actually the case that puts all the "You're
               | literally killing us with expensive insulin prices"
               | people in a very negative light. At best they're ill-
               | informed, at worst they're being intentionally deceptive
               | to achieve political aims.
        
               | ska wrote:
               | How cheap is the cheap option?
               | 
               | I found some references for "old" versions that claim
               | price increase from $17 in 1997 to $138 today, another
               | from $21 to $255.
               | 
               | Going by inflation only those would be around $30-40.
               | 
               | I don't know how much a typical diabetic needs per month
               | (I imagine it varies) but I could see that being a
               | problem for a lot of people if that is, say a monthly
               | supply.
        
               | RHSeeger wrote:
               | > How cheap is the cheap option
               | 
               | About $25, that last I checked. The ones you're talking
               | about, I believe, are the "newer" ones (which are not
               | very new). The prices of those have shot up over the
               | years (in the US) for no good reason. It's shameful.
        
               | ska wrote:
               | I guess my mistake was thinking 20 plus years was old
               | enough, that would be out of patent.
        
               | RHSeeger wrote:
               | My understanding it that they are out of patent, but
               | regulations make it hard for new players to enter the
               | market. Since the number of companies making them are so
               | limited, even the generics cost a lot.
               | 
               | For example, Basaglar is a "generic" of Lantus, but it's
               | still expensive.
               | 
               | Here's How to Save on Basaglar, the Expensive Lantus
               | "Generic" https://www.goodrx.com/blog/basaglar-expensive-
               | lantus-generi...
               | 
               | > Basaglar contains the same kind of insulin as Lantus
               | (insulin glargine), and while it is cheaper--Basaglar
               | costs about 15% less than Lantus--it is still expensive,
               | with a cash price of around $450 for a 30-day supply.
               | 
               | Unlike normal generics, the bio-similars need to go
               | through their own clinical trials and prove they work the
               | same as the original. They can't just "use the same
               | ingredients" and release it. Mind you, that doesn't
               | explain the extreme price markup, but it does explain why
               | these "generics" don't follow the same "85% cost
               | reduction" of normal generics. They still have,
               | effectively, a costly R&D phase.
               | 
               | At least, that's my understanding.
        
               | ska wrote:
               | I understand that argument.I hadn't thought of the issue
               | of insulin being a biologic, so true generics aren't
               | likely, hence biosimilars. None of this justifies a 10x+
               | price increase on the same product over 20 years of
               | course.
               | 
               | By the way that same site had an interesting article
               | breaking down costs normalized by insulin unit
               | 
               | https://www.goodrx.com/blog/how-much-does-insulin-cost-
               | compa...
               | 
               | By that table and some assumptions about approx 40 IU/day
               | it looks like the cheapest you could get away with at
               | full retail would be about $120/mo, assuming optimal
               | usage etc. The most expensive version would be at least
               | 5x that.
        
               | KittenInABox wrote:
               | It's extremely hard to manage your health with old
               | insulins because they're so much less precise. Imagine if
               | you were programming but your keyboard works such that
               | any key you type might be +3/-3 key presses actually.
               | Except in the case of diabetes, this results in the loss
               | of body parts and blindness.
        
               | pimeys wrote:
               | I have to ask, are you suffering from a Type 1 diabetes?
               | If not, at least for me, this answer kind of misses the
               | point completely. Type 1 is a hell to manage. It is
               | REALLY hard.
               | 
               | Like I actually use an open source pancreas to control my
               | glucose levels so now I can sleep every night without
               | having to worry about dying. This is in Europe where the
               | insurance covers everything and prices are cheaper than
               | in US.
               | 
               | Using the Walmart insulin makes everything much much more
               | complex, and even for the smartest of us, even with the
               | best possible insulins, managing T1 is a HUGE pain and
               | can kill you quite fast.
               | 
               | I hope I misread your comment...
        
               | RHSeeger wrote:
               | I do have type 1 diabetes, and I lived on R/L for over a
               | decade. The point being made here is
               | 
               | > The high price of tier 1 insulins is killing people
               | 
               | Is (more or less) a lie. While
               | 
               | > The high price of tier 1 insulins is making people's
               | lives considerably worse and their diabetes harder to
               | manage.
               | 
               | Is (more or less) true.
               | 
               | When you try to push for change and use, as part of your
               | argument, a lie, you sabotage yourself. People can point
               | at what you're saying and, ignoring the validity of what
               | you're trying to achieve, say "you're lying". That's bad.
               | 
               | The truth is that there are good reasons why tier 1
               | insulins should not cost as much as they do, not by a
               | long shot. And destroying your own progress towards
               | changing things is counter productive. Just don't do it.
        
               | burkaman wrote:
               | It is not a lie if you think about real human behavior,
               | rather than a theoretical rational automaton. There are
               | real, documented cases of people who were prescribed
               | insulin they could not afford, tried to ration it, and
               | died as a direct result. Maybe their doctor told them not
               | to use it, or they didn't live near a Walmart, or they
               | didn't know it existed. Maybe they tried the Walmart
               | stuff and almost died because it's so difficult to
               | manage, so their doctor told them to switch back to the
               | best treatment available. I promise they did not die to
               | make a political point.
               | 
               | One in four patients in the US have rationed insulin
               | because of the cost:
               | https://news.yale.edu/2018/12/03/one-four-patients-say-
               | theyv...
               | 
               | It is simply untrue to say the high cost only forces
               | people to use the cheaper Walmart generic. That isn't
               | what happens. They ration it, and sometimes they die.
               | 
               | Finally, it doesn't make sense to say that the high price
               | is making diabetes harder to manage, but isn't killing
               | people. That's like saying speeding doesn't kill, it just
               | makes the car harder to manage.
        
               | RHSeeger wrote:
               | Correction
               | 
               | > One in four patients say they've skimped on insulin
               | because of high cost
               | 
               | > say they've
               | 
               | ^ is the key component. I expect the vast majority of
               | those people had a choice, and they chose not to take it.
               | A poor choice, and a choice they shouldn't have to make,
               | but a choice nonetheless.
               | 
               | The point is, if you're going to fight for positive
               | change, use an argument that can't be trivially dismissed
               | because it isn't true. Fight effectively.
        
               | burkaman wrote:
               | Yes, why did they choose not to take it? Try to empathize
               | with these people. Why did they do something so
               | dangerous? Then follow it one step further. In the case
               | of those that died, why did they die? What factors
               | contributed to their death? If the price of insulin had
               | been lower, and everything else was the same, would they
               | have died?
               | 
               | I would argue these two statements are equivalent:
               | 
               | - My patient was killed by the high price of insulin.
               | 
               | - If the price of insulin had been lower, my patient
               | would still be alive.
               | 
               | I suspect that you accept the second statement, but not
               | the first. What's the difference?
        
               | RHSeeger wrote:
               | They are two different, but related, things. There are
               | people who die early because they eat extremely poorly;
               | lots of fats and sugars.
               | 
               | 1. If the fatty and sugary foods were too expensive for
               | them to buy, they would not have died from those things.
               | 
               | 2. They did not die because fatty/sugary foods weren't
               | expensive. They died because they chose to eat
               | fatty/sugary foods. [1]
               | 
               | Just because X (good insulin being cheaper) would have
               | helped prevent Y (deaths) doesn't mean that <not X>
               | caused Y.
               | 
               | [1] I'm ignoring the fact that truly healthy foods tend
               | to outside the price range of the poorer segment. The
               | analogy only really goes so far here.
        
               | burkaman wrote:
               | Ok, I guess that's the core of our disagreement. I do
               | believe that "X prevents Y" means "<not X> causes Y".
               | Thanks for the discussion.
        
               | RHSeeger wrote:
               | To me, it's the difference between "is a requirement for"
               | and "is the cause of".
               | 
               | - People drive cars.
               | 
               | - Cars are car jacked.
               | 
               | - If people did not drive cars, carjackings could not
               | happen.
               | 
               | - People driving cars is a requirement for carjackings.
               | 
               | - People driving cars is not a cause of carjackings.
               | 
               | I understand that it is possible and truthful to argue
               | that people driving cars is a cause of carjackings; it's
               | just not my view of the meaning of those words.
        
               | jamincan wrote:
               | You're letting pedantry get in the way of the far more
               | important point that making the medication more
               | affordable would save lives.
        
               | oasisbob wrote:
               | Saying that cheap insulin kills people seems like a
               | hyperbolic, but essentially true statement.
               | 
               | It's well known that you need to keep all sorts of things
               | under control with type 1 to avoid long-term health
               | complications. Blood sugar is the most obvious.
               | 
               | I watched my father manage his for decades, starting in
               | the 1980s. The technology improvements were interesting -
               | his first insulin pump (about the size of a VHS tape),
               | the custom software to data-dump his glucose meter,
               | "supply-hacking" to keep the infusion sets affordable...
               | 
               | He still had management challenges despite being a
               | dedicated, disciplined, marathon-running Mormon on the
               | leading-edge of treatment. He was fortunate enough to be
               | involved in the DCCT/EDIC trials at the University of
               | Washington, and took the early lessons about future
               | complications very seriously.
               | 
               | You make Diabetes harder to manage by removing modern
               | improvements to the standard of care, and you are
               | certainly going to see increases in deaths and severe
               | negative outcomes.
        
               | dv_dt wrote:
               | The people who can least afford healthcare also have the
               | most external constraints on their work and life, making
               | it the most difficult to make good, non-harmful use of
               | older insulin in the long term.
               | 
               | There are plenty of cases of people literally dying
               | because of difficulty managing insulin due to cost. It's
               | nice to say other low cost forms are available while
               | handwaving away actual deaths as well as accumulative
               | long term damage from difficult insulin management.
               | 
               | https://khn.org/news/insulins-high-cost-leads-to-deadly-
               | rati...
               | 
               | Many of the "newer" forms are 20+ years old, and are also
               | extremely low cost to produce.
        
               | icelancer wrote:
               | It's the same with basically every other campaign that
               | wants to grab headlines. It literally makes no sense that
               | insulin prices are killing people and it's unavailable,
               | and a basic amount of research shows that yeah indeed,
               | it's clickbait intended to hook you into a more complex
               | discussion.
               | 
               | I pay zero attention to people and news sources that
               | repeat that behavior more than once. Lead with the truth.
        
               | RHSeeger wrote:
               | You are a prime example of WHY that lie is bad. The
               | discussion they are trying to drag you into is an
               | important one, and well worth having. However, by
               | starting out with a lie, they are driving you away before
               | they can even start the conversation with you about it. A
               | conversation where you might agree with them.
        
               | RHSeeger wrote:
               | What you've said is true. Refusing to use the older
               | insulins is what is killing people. Having to use the
               | older insulins is shitty, and it shouldn't be happening,
               | but it's not the thing that's killing people.
               | 
               | However, actually _saying_ that tends to get people up in
               | arms, harassing you about how it how it shouldn't be
               | necessary for people to use the older insulins, and how
               | the newer insulins shouldn't cost what they do. Even
               | though everyone actually agrees with them and they're
               | arguing against a point that nobody it actually trying to
               | make. It is... frustrating trying to get people to
               | understand that you agree with them, but you're talking
               | about something different.
               | 
               | I had this exact discussion with one such person
               | yesterday, and I was trying to explain that they are
               | sabotaging their own goals by misrepresenting the issues.
               | And that I WANT them to succeed in changing things, but
               | they're making it harder to do so.
               | 
               | Edit: You're already being downvoted for stating
               | something that is obviously and undeniably true, because
               | people are not bothering to understand what you're
               | saying. I'm sorry for that.
        
               | HarryHirsch wrote:
               | _Having to use the older insulins is shitty, and it
               | shouldn 't be happening, but it's not the thing that's
               | killing people._
               | 
               | In a way it is killing people, blood sugar control is
               | much easier with a mix of the newer insulins, and
               | patience compliance is much higher. This directly
               | translates into better quality of life and lower disease
               | burden from diabetes complications.
               | 
               | No one can argue that pharmcos shouldn't be paid for R &
               | D that increases quality of life, in civilized countries
               | the taxpayer should and will pay for your medication if
               | it's an improvement over what's already at market.
               | 
               | But here people seem to be arguing that if you can't
               | afford anything else there's still Walmart short-acting
               | Humalog, and you get to bear all the risk, and that's
               | just fine.
        
               | arwineap wrote:
               | That's context I've never gotten before. Obviously
               | there's a nice convenience benefit built into this
               | product that a company has created, they should get to
               | charge some markup for that.
               | 
               | I wonder how different the production costs are though,
               | my understanding is the costs to consumer are greater
               | than 10x
        
               | [deleted]
        
               | pimeys wrote:
               | The difference with the old insulin vs. the analogs is
               | that with the old ones it's really easy to lose a toe,
               | leg, kidney or get blind. With the new analogs it's
               | possible to control your glucose levels so that you can
               | stay healthy and get old.
               | 
               | Source: a T1 diabetic, used all possible insulins in my
               | life. Very happy in Europe.
        
               | UnpossibleJim wrote:
               | They also tend to have a more reliable absorption curve.
               | I take both Novolog (short acting) and Lantus (long
               | acting), which are the newer insulins. Lantus has a more
               | predictable long acting curve than the older L did, even
               | though I take it in a 12 hour cycle. It rises not so much
               | like a bell, but more like a plateau, I guess it a better
               | analogy. At least for me. The L really was a pain for
               | planning, especially when physical activity was involved,
               | as it would shorten the bell curve.
        
               | RHSeeger wrote:
               | On a related note... if you can afford a CGM (continuous
               | glucode monitor), especially one with alerts (like the
               | Dexcom G6), I wholeheartedly recommend one. They are life
               | altering for a type 1 diabetic. Being able to check your
               | blood sugar by just looking at your phone (or separate
               | receiver) is very convenient. I check my blood sugar 100
               | times a day, instead of poking a hole in myself 10 times
               | a day. And I can (mostly) rely on it alerting me if my
               | blood sugar gets low (or is going to get low soon). I
               | cannot stress enough how much it changed my control of my
               | diabetes.
               | 
               | Admittedly, they're not cheap w/o insurance, which sucks.
               | But if you can get one, so do. You won't be disappointed.
        
               | mgarfias wrote:
               | I keep on trying to get one, but being well controlled,
               | the ins cos won't approve it. And its pretty spendy out
               | of pocket. My biggest use case would be an alert that my
               | glucose levels are tanking while exercising so I can do
               | something about it before I drop out. I find myself not
               | doing things like long bike rides that I'd really like to
               | do because of it.
        
               | HPsquared wrote:
               | I guess the question is, do countries with socialized
               | healthcare provide the cheap version or the expensive
               | one?
        
               | ravitation wrote:
               | Not actually the question since countries with modern
               | healthcare systems provide all types of insulin at an
               | average cost per unit that is roughly 1/10th to 1/20th
               | the cost in the United States (cheap vs. expensive is an
               | over simplification).
        
             | relax88 wrote:
             | It's the same reason why health care costs are out of
             | control in general.
             | 
             | It's a for-profit system where literally every cog from
             | drug company to pharmacist has an incentive to separate you
             | from your money.
        
               | jcampbell1 wrote:
               | The entire hamburger market is for profit, but that isn't
               | a problem as I can buy good hamburgers at many different
               | price points. The issue is that the industry is
               | controlled by 1% of the population who have exclusive
               | rights to decide what you buy, and a government agency
               | that limits the hell out of who can sell anything in the
               | name of safety.
               | 
               | When Europeans can pick from 5 different spring loaded
               | epinephrine injectors and Americans can only legally buy
               | one from a specific manufacturer, of course Americans pay
               | 5x as much.
               | 
               | In plenty of places around the world you can buy all
               | humulin you want without a doctor or the FDA for $30
               | vial.
        
               | relax88 wrote:
               | If Hamburgers were required to survive I'm sure you would
               | see the same problems.
               | 
               | If the state was the single largest negotiator for
               | purchasing hamburgers and representing tens of millions
               | of people odds are you would have more competitive
               | hamburger supply bids.
        
             | [deleted]
        
         | adamrezich wrote:
         | > Call your congresscritter.
         | 
         | unfortunately not likely to do anything as long as the big
         | pharma lobby remains as powerful as it is
        
           | badRNG wrote:
           | What else is one to do?
        
             | dekhn wrote:
             | If your question is truly serious, the answer is: nothing.
             | It's almost certainly impossible to fix the US healthcare
             | system given the enormous number of people who profit so
             | much from its current dysfunction. Unless there is some
             | sort of major disruption that completely changes the
             | landscape (very unlikely), you can expect pharma in the US
             | to be extremely expensive.
        
               | shadowgovt wrote:
               | That's bad news, because when the answer is "nothing,"
               | people don't do nothing.
               | 
               | They instead resort to the language of the unheard.
        
               | dekhn wrote:
               | it will be interesting to see how health care evolves in
               | the US, to say the least.
        
             | HarryHirsch wrote:
             | Take to the streets, like the French do?
        
               | SiempreViernes wrote:
               | Actually, the French mostly stay at home: the last
               | gubernatorial elections had like 34% participation.
        
               | permo-w wrote:
               | They mean strikes, and protests
        
               | OriginalNebula wrote:
               | In the second round of the 2017 presidential election
               | there was 65.3% turnout. In the 2020 US presidential
               | election there was 66.8% turnout.
        
               | tux3 wrote:
               | The primary tool we use to exerce Democracy is not so
               | much the vote anymore, it is protests on specific issues.
               | 
               | Votes are too diluted, and there is no accountability for
               | campaign promises.
               | 
               | Le referendum, c'est Place de la Bastille!
        
             | mgarfias wrote:
             | I'd vote for swinging politicians from lamp posts, but were
             | not allowed to do that.
        
             | bruiseralmighty wrote:
             | About Insulin?
             | 
             | Look for ways to make the patents unenforceable. If
             | diabetics had the ability to make their own safe insulin at
             | home that would be best. Then all they would need is an
             | internet connection and some basic components. The closer
             | we get to that ideal the more empowered they are.
             | 
             | This would actually solve a lot of price gouging for drugs.
             | 
             | However that's only a stop gap measure. What's happening
             | with gating access to insulin is happening to a thousand
             | other products in a thousand other industries right now.
             | Start looking at alternative governance structures. Lord
             | knows everyones got a blog and a half-assed plan to run
             | things better at this point (since the bar is so low).
             | 
             | Just don't poke the bear. As cathartic as hanging
             | 'congresscritters' would be it wont actually solve the
             | problem.
             | 
             | Basically act like you don't expect anyone else to fix this
             | problem for you because nobody is going to; especially if
             | you voted for them.
        
         | api wrote:
         | The US health care system combines everything bad about
         | government-run health care (slow progress due to heavy
         | regulation, layers of bureaucracy, government-enforced drug
         | monopolies) with everything bad about free-enterprise health
         | care (inequality, market price fixing, uneven quality, lots of
         | quackery at the edges of regulation).
         | 
         | We need to pick something. If we're going the free enterprise
         | way we need competition, price transparency, quality and
         | outcome transparency, more open markets, and much lower taxes.
         | If we're going the state-run or state-insured way then we need
         | to whole-ass it and vertically integrate and drop the state-
         | backed private insurance hybrid nightmare.
         | 
         | The US does this pessimum thing all over the place. We are
         | taxed almost like a more "socialist" country (unless you are
         | rich enough to offshore and play tax loophole games) but do not
         | get the benefits of one. Either cut my taxes down to Costa Rica
         | levels or give me benefits at least as good as Canada please.
        
           | dv_dt wrote:
           | Every time I've dug into it, modern nations which enjoy a
           | much lower cost per capita coverage (which the US is a major
           | outlier) basically have a government mechanism to set prices
           | for drugs and health services.
           | 
           | There are no free market health systems in leading economic
           | nations (unless maybe you take a very small niche corner of
           | the systems)
        
             | adventured wrote:
             | > There are no free market health systems in leading
             | economic nations
             | 
             | That also does not exist in the US and hasn't in more than
             | half a century. The US could hardly be any further away
             | from a free market in healthcare. It's hyper regulated, and
             | hyper dominated by government programs (Medicare, Medicaid,
             | and dozens of other programs and agencies).
             | 
             | The US healthcare system is controlled top to bottom by
             | rigid, strict government regulations and oversight. It's
             | the way it is precisely because there is no free market at
             | all. The corporatist interests like it just the way it is,
             | and work with the politicians to constantly maintain that
             | highly regulated environment: it's regulated in their
             | favor, exclusionary of nearly all potential competition.
             | And it's insanely expensive to try to start anything in
             | healthcare, which favors the incumbent further.
             | 
             | Try starting a hospital or opening a clinic. Try becoming a
             | doctor. Try getting a drug to market. Try getting a medtech
             | device to market. Hyper regulation every direction you
             | look.
             | 
             | Free market? Ha.
        
               | dv_dt wrote:
               | My point is that it's seems a little optimistic to think
               | that a free market for healthcare is an adequate
               | solution, given that no free market healthcare system
               | exists anywhere at scale. I think some markets are simply
               | inappropriate for free markets - particularly one where
               | services are by definition specialized and market
               | feedback involves failures in critical life risking
               | situations.
        
           | KoftaBob wrote:
           | Finally someone has put into words my frustration with this
           | healthcare system.
        
             | rrrrrrrrrrrryan wrote:
             | Obamacare was widely derided by many Democrats as a worst-
             | of-both-worlds plan when the public option was scraped.
        
           | chiefalchemist wrote:
           | What we need is a focus on prevention. A significant amount
           | of the system is devoted to preventable conditions. Lower the
           | demand and prices will naturally come down across the board
           | as resouces get redistributed, etc.
           | 
           | But as it is, insulin is high demand and increasing. Prices
           | simply don't fall when demand increases.
        
           | sneak wrote:
           | You're absolutely right that either would be better than the
           | current situation.
           | 
           | The issue, though, is not that it's half-assed and fucked up.
           | It's working by design, to use legislative schemes to funnel
           | money to incumbents and friends/donors, while still
           | supporting the "free market" ideology, when really it's just
           | regulatory capture.
           | 
           | The system is designed for graft, and it's working as
           | intended. Those with the power to "fix" it won't, because to
           | them it's not broken at all.
           | 
           | The US has the same problem in telecommunications,
           | war/defense, and medicine. The largest vendors become
           | integrated with the budget- and policy-makers, and the whole
           | system exists to extract maximum value from the consumer
           | class.
        
         | a3n wrote:
         | > Call your congresscritter.
         | 
         | Sorry, but regular people don't make "campaign contributions"
         | of any noticable size, so all we get back is a form letter
         | acknowledgement based on whatever box you checked for subject.
         | 
         | Big Pharma, Big X and Big Y, on the other hand, "donate" enough
         | "campaign contributions" that the campaigner can all but ensure
         | (re) election based on recent name recognition to get the
         | nomination, then counting on "their" voters being unable to
         | vote for the opposite party even with the discovery of a live
         | boy or a dead girl.
         | 
         | https://duckduckgo.com/?q=live+boy+or+dead+girl&t=fpas&ia=we...
        
           | relax88 wrote:
           | Well maybe it's time to start protesting?
           | 
           | What always amazes me is how much this is tolerated in the
           | "Land of the free". At what point do Americans stand up for
           | democratic principles?
           | 
           | This pathetic "we can't do anything" attitude will be how
           | democracy dies.
           | 
           | If my electoral district was gerrymandered or corporate
           | donations through PACs we're allowed in Canada I would be
           | planning protests instead of typing this. Our system is far
           | from perfect, but I have a hard time imagining a scenario in
           | which the public here would passively accept many of the
           | things we can see to the South.
           | 
           | Why is there so much apathy towards these issues?
           | 
           | Shouldn't the fairness of the democratic system in the US be
           | the #1 issue for both Democrats and Republicans?
        
             | a3n wrote:
             | When you're told you're number one your whole life, you
             | don't go anywhere else, and your religion and patriotism
             | are joined at the hip, why, there's no reason to change
             | anything.
        
           | oceanplexian wrote:
           | Respectfully disagree. I live in a smaller US state and I've
           | emailed my representatives and received a personal reply from
           | both of them. One actually engaged and we politely discussed
           | a public policy issue back and forth in an email thread. More
           | often than not you can walk right into their office and meet
           | them if you'd like.
        
             | kaesar14 wrote:
             | And did meeting them shift their position on an issue where
             | the opposition is a massively powerful and wealthy industry
             | that spends millions on lobbying efforts?
        
             | cde-v wrote:
             | I'm sure your nice discussion held as much sway with them
             | as hundreds of thousands of dollars of "donations".
        
               | relax88 wrote:
               | Try showing up with 500 people.
        
               | andai wrote:
               | I hazarded a guess that a bit more than 500 people suffer
               | from diabetes in the US -- more like 34 million. If you
               | could get one in a thousand to agree to take political
               | action, that's 34,000 people.
        
           | nceqs3 wrote:
           | Factually incorrect comment. Corporations cannot make
           | campaign contributions.
        
             | kadoban wrote:
             | Are you sure? Pretty sure they can. Either way they can
             | donate huge amounts to PACs, create their own PACs, run
             | ads, etc. Bribery is pretty much legalised, it's
             | ridiculous. See Citizens United v. FEC for example.
        
             | skciva wrote:
             | _wink wink_
        
             | arcticbull wrote:
             | Luckily people can, and corporations are people. That is to
             | say, corporations can donate to PACs and PACs can donate to
             | candidates.
        
               | nceqs3 wrote:
               | not true. PACs cannot donate more than a pretty low limit
               | to candidates.
        
               | mikepurvis wrote:
               | The whole point of a PAC is that they _don 't_ donate to
               | the campaigns directly, but rather exercise their free
               | speech to supply the public with "information" about the
               | candidates.
        
               | a3n wrote:
               | Money is, after all, "speech."
               | 
               | https://en.m.wikipedia.org/wiki/Citizens_United_v._FEC
               | 
               | Walk softly and carry a big purse.
        
             | roywiggins wrote:
             | Sure, they make donations to super PACs, which ""don't
             | coordinate""[0][1][2][3] with campaigns.
             | 
             | [0] https://www.marketwatch.com/story/trump-and-democratic-
             | polit...
             | 
             | [1] https://www.rollcall.com/2019/06/06/what-is-
             | mcconnelling-how...
             | 
             | [2] https://www.theatlantic.com/politics/archive/2015/09/10
             | -ways...
             | 
             | [3] https://www.latimes.com/nation/la-na-politics-
             | superpacs-impa...
        
               | mikepurvis wrote:
               | I can't find the link now, but something that really
               | opened my eyes on terrifying PACs are was someone
               | pointing out how they manipulate the political discourse
               | _without even spending a dime_. They just sit there on a
               | gigantic warchest and send out gangster-style missives
               | like  "hey it sure would be a shame if you supported X or
               | Y and we had to drop $10M on pummeling you with primetime
               | TV ads in the week before your reelection."
               | 
               | This kind of influence is completely untraceable through
               | all the normal disclosure mechanisms since no money
               | actually gets spent. And worse still, it offers enormous
               | leverage-- once you have that war chest, you can use it
               | to issue hundreds of threats and only occasionally have
               | to actually follow through.
               | 
               | It's just a completely different ballgame compared to a
               | "normal" campaign finance option that directly spends
               | donations.
        
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