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Biohackers take aim at big pharma’s stranglehold on insulin

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Re: Biohackers take aim at big pharma’s stranglehold on insulin

#191
post #144

Earlier quoted context omitted.

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.

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.

> 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.

Re: Biohackers take aim at big pharma’s stranglehold on insulin

#192
post #135

Earlier quoted context omitted.

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…

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. Peo…

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.

Re: Biohackers take aim at big pharma’s stranglehold on insulin

#193

Earlier quoted context omitted.

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/m…

> 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.…

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.

Re: Biohackers take aim at big pharma’s stranglehold on insulin

#194

Earlier quoted context omitted.

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.

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.

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_peop...

Re: Biohackers take aim at big pharma’s stranglehold on insulin

#195

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

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."

Re: Biohackers take aim at big pharma’s stranglehold on insulin

#196
post #78

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

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.

> 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).

Re: Biohackers take aim at big pharma’s stranglehold on insulin

#197

Earlier quoted context omitted.

> 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…

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.

> 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.

Re: Biohackers take aim at big pharma’s stranglehold on insulin

#198

Earlier quoted context omitted.

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.

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 injector…

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.

Re: Biohackers take aim at big pharma’s stranglehold on insulin

#199

Earlier quoted context omitted.

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'…

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 h…

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 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.

Re: Biohackers take aim at big pharma’s stranglehold on insulin

#200
post #78

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

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.

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.

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