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Comment by Benjamin_Dobell | Hacker News Reader

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.

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Hi, I am one of the scientists working on the project. We had a lot of discussion on the project about defensive strategies to avoid any issue, since we are dealing with a massive industry. We don't have a definitive protocol yet, so this is why it is not publish. But if you want more details, I would be happy to answer your questions.

I've seen a lot of projects like yours with the purest of goals never get past this stage because, simply, nobody makes the first move. It's almost like the attention gets in the way of publication. Either that, or there was never anything there, and it was just good PR from the beginning.

Your project is too damn important to let this happen. Please find or do whatever you have to do in order to publish what needs to be published. If that means taking a leap of faith, please, for the love of goodness, please do it.

I forgot to mention it, but there is also FDA requirement to how we disclose the protocol. Usually it is patented process, so we are looking to see how we should do it to not create issue for the FDA validation. Other volunteer are working on this side, not me. I am a simple biochemist, those things are two complicated for me.

Understood -- keep doing what you do best :). Good luck to you and your cohorts, friend.

It is a risk, I agree. I can assure you that there is work done in the lab, and that we plan to publish it, one way or another. I personally think that bioRxiv can be perfect to do a fast publication.

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.

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

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.

It’s a pretty… lame argument. The insulin maker is saying they want to lower the price for you, but hose the insurance company.

Frankly, we should nationalize insulin production and stop people and insurance plans from going broke buying it. Imagine if Medicaid wasn’t paying usurious margins for a commodity that has been around for a century.

Unfortunately this is pretty accurate. Pharmacy Benefit Managers (PBMs) are contracted by insurers to set the formulary, in effect the list of drugs the insurer will pay for. They negotiate to lower drug costs, usually via manufacturer rebates.

Where this is perverted, is that the PBMs have complex compensation schedules wherein they receive a percentage of drug rebates. Their goal is to secure the largest rebate possible. Thus, either negotiate more effectively OR pressure manufacturers to increase list prices and give larger rebates. In practice, the latter happens most often. Insurers don't mind high list prices because they get large rebates and it encourages people to stay insured. Net prices (pharma revenue) on off-patent insulin have declined consistently since mid-2000s [0].

However, insulin is inexcusably expensive due to legacy regulation about equivalence for biologics and sticky patient preferences. Even current net prices are 2-5x too high relative to what a competitive generic market could produce.

[0] https://www.fiercepharma.com/pharma/net-prices-for-insulins-...

All these complicated incentives make it hard to figure out who's responsible, so let me ask a question:

What if a manufacturer lowered the price of insulin to $10 a month and gave no rebates at all? Would insurance companies refuse to cover it and pharmacies refuse to carry it?

I think the problem is that this isn't in either of their interests. The insurers benefit from high prices because it scares people into staying insured and, IIRC, the laws limit the percentage of their profits, so a percentage of a higher number means more profit. The drug companies more obviously benefit from high prices.

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