
People Are Clamoring to Buy Old Insulin Pumps - tptacek
https://www.theatlantic.com/science/archive/2019/04/looping-created-insulin-pump-underground-market/588091/
======
aarondf
I've been using this system for ~2 years and it has completely changed my life
(not an overstatement).

About 6 months ago I realized that as more and more people found out about
this (and Atlantic publishes articles about it...) these pumps were going to
be harder to find. I immediately scoured craigslists across the county and
spent an inordinate amount of money to buy three of these pumps, because once
they break, it's game over.

I can't imagine having to go back to the old way, it actually scares me.

~~~
sizzle
Since this is such a mission critical piece of hardware that would severely
impair the user if a bug or malfunction developed, how can you completely
trust the device will continue to work 99.9% of the time? I really want to
recommend this to loved ones but hesitate with the liability of
over/underdosing insulin and them not being as tech saavy as the HN crowd...

~~~
hasahmed
A valid concern, but also humans are guaranteed to make mistakes and I'm sure
a high percentage of them, so anything that lowers that error rate is an
improvement even if it's not perfect. My thoughts anyway

~~~
sizzle
Similar to self driving cars improving car accident death rates over human
drivers. Great point.

------
SolaceQuantum
FTR: This is about the purchasing of a hackable insulin pump in order to
create an artificial pancreas. Although one exists on the market, its lack of
flexibility means users still prefer the hacking technique called "looping",
which allows diabetics to select preferred sugar levels and monitoring engines
of choice. An organization called TidePool is hoping to have official approved
mechanisms working for more flexible artifical pancreases.

------
spaceflunky
Side note: Did anyone else find this article difficult to read? Like it was
written by an ESL writer? Christ, this is The Atlantic and it reads like it is
written by a 7th grader.

Example:

> "To start looping with OpenAPS, Boss did also need to buy a mini computer
> called an Edison."

"..Boss did also need..." Why not just say "...Boss also needed...

>"By 2014, the hardware components of a DIY artificial pancreas—a small
insulin pump that attaches via thin disposable tubing to the body and a
continuous sensor for glucose, or sugar, that slips just under the skin—were
available,"

This whole paragraph is confusing. Why put the parens before the "...were
available,"?

>but it was impossible to connect the two.

Which two? The the sensor and the tubing? Something else?

>That’s where the security flaw came in.

Which fucking security flaw? With the DIY pancreas or the Medtronic?

edit: removed codeblocks

~~~
Jtsummers
If you use code blocks for quotes you can make it more readable by introducing
a few extra newlines:

    
    
      "By 2014, the hardware components of a DIY artificial
      pancreas—a small insulin pump that attaches via thin
      disposable tubing to the body and a continuous sensor
      for glucose, or sugar, that slips just under the skin—
      were available,"
    

That should be readable on most devices without needing to scroll left/right.

~~~
tcoff91
People really need to just stop using code blocks for quotes.

~~~
spaceflunky
So what's the best way to do this? Honest question. I was looking and I didn't
find good formatting help doc in less than 5min so I went with code blocks.
Sorry haha :)

~~~
colejohnson66
Use > and separate each quote with an empty line

------
sithlord
As a type 1 diabetic, its kind of refreshing to see all these posts make it to
the top of HN. Over the last few months I have seen several related to t1d
tech, and others related to the ridiculous pricing of insulin.

Nothing really to say other than that, but that I appreciate all the interest
the community shows towards those with chronic illnesses.

------
selimthegrim
I used to work for a company well known in the diabetes space that essentially
automated the screenshot process Dana Lewis describes but via desktop and a
webapp - we had internal protocols from most of the device manufacturers but
our sticking point was training clinicians, getting physicians to buy in and
dealing with Cerner and Epic (and the FDA which insisted the webapp was a
medical device). The tech stack was a bit older than I would have liked. I did
try to help some people bitbang their own meters on the sly but I wish I’d
heard about this loop stuff before I left for grad school (mid-2014)

------
potatofarmer45
I looked at the OpenAPS documentation. I had no idea the preferred SoC for
this system is the now discontinued Intel Edison. We have boxes of them from
an IoT startup I was part of that folded a few years ago.

I see there are references to a SF looping group, but is there one for NYC?
I'm happy to donate a lot gen 1/2 Edisons if there are people who need it.

~~~
scottleibrand
Hey, Scott from OpenAPS.org here. That’s my email address: if you’d like to
get in touch I’d be happy to arrange getting unused Edison’s to folks who need
them. Or if you’d prefer, my Twitter DMs are open as well.

~~~
masklinn
FWIW your address is not in the comment, if you did not remove it I'm guessing
HN stripped it out. In that case, you may want to configure your email address
in your HN profile instead.

------
platz
> The system also goes straight to an Android phone, eliminating the need for
> an extra device such as a RileyLink or an Edison.

I'd almost _want_ an external device to do the calculations.

Imagine being killed by some Android bloatware.

Maybe devs need to start thinking of their apps as being on bio-critical
devices.

------
henrikberggren
The big innovation here is actually the CGM sensor. Having a sensor on your
body that passively gives you information about how your body reacts to food,
exercise and medication is amazing. I wrote a post last year on how it TOTALLY
changed my life: [https://medium.com/south-park-commons/the-wearable-that-
chan...](https://medium.com/south-park-commons/the-wearable-that-changed-my-
life-1a5b9bdbab22)

~~~
ctchocula
Thank you for sharing this post. I enjoyed how similar the feedback loop for
your experiments was to optimizing code for performance, and it makes me
(someone who doesn't have diabetes) want to try CGM. However, I don't think I
can get it through insurance. It costs about $42.99 for a 10-day sample, so
maybe I'll try a 10-day sample to play around with it.

------
netvarun
I presume this is the backstory for
[https://news.ycombinator.com/item?id=19763518](https://news.ycombinator.com/item?id=19763518)
(which btw was a very engrossing read in hardware reverse engineering)?

~~~
friedegg
Yes, the number of pump models that were hackable was extremely small, which
made them extremely valuable to anyone looking to do this. The new work on the
Omnipod should open this up to many more people who couldn't obtain an older
(far out of warranty) pump.

------
phalangion
Scott Hanselman recently posted about his experiences with the open source
artificial pancreas [1]. Interesting that this article would come up so
shortly after.

[1]
[https://www.hanselman.com/blog/OpenSourceArtificialPancrease...](https://www.hanselman.com/blog/OpenSourceArtificialPancreasesWillBecomeTheNewStandardOfCareForDiabetesIn2019.aspx)

------
EamonnMR
The fact that hobbyists can build this but it's not an approved medical device
is a flagrant example of how the medical industry is so risk averse as to be
allergic to innovation.

~~~
jMyles
> the medical industry is so risk averse as to be allergic to innovation.

Is it really risk aversion? Or is it a culture whose first value is profit-by-
regulatory-capture?

------
jaekwon
Ben West is cited in an article linked to from the OP article. He was hacking
on that pump for the longest time since 2006 when I was living with him, and
what do you know, he caused a movement.

Also check out Anthony Di Franco's open insulin project.

------
ryan_j_naughton
Why isn't there a country in the world which would allow a wild west of
medical innovation?

Then people could fly there for a brief holiday, buy the device, and bring it
back to the US legally.

------
ngngngng
Is there an open source insulin pump out there? That seems like it would help
the sustainability of this project.

I just texted my older brother to see if he had any of his old insulin pump
models. I'd love to build him one since he only has a few years of life left
since he's terrible at managing his own sugar levels.

------
scarejunba
This is a classic example of where you have to let people experiment with
their own bodies. The risk tolerance lots of people have is way higher than
what society is allowed to mandate as the best.

Of course paternalistic people will use the instruments of the state to
restrict what we can do for ourselves. We can't just build and share "an
unapproved device for managing your insulin" because the FDA will get in the
way. But life would be so much better if we had the freedom to do that.

Unfortunately, the real problem is that there are a bunch of idiots who don't
know how to take risks. They expect things to always work and they team up
with the people who want to protect the idiots and oppress those of us who are
willing to take a little risk for some reward.

------
jonfw
I would love to see more of an open source movement in medical technology.
That would be such a great way to reduce costs and make healthcare more
accessible.

Who knows what could be accomplished if we just had root access to more of our
technology.

~~~
soulofmischief
Liability is a huge issue. Lots of sociopolitical changes need to take place
first.

------
bdcravens
I'm fortunate to have a new pump that is a closed loop (the Medtronic Minimed
670g) and it has been a game changer for me.

------
lenkite
Wow OpenAPS is on github
[https://github.com/openaps/openaps](https://github.com/openaps/openaps) and
written in Python!

------
DoreenMichele
I've seen a fair number of diabetes related articles over the years that
posit, for example, connections between diabetes and inflammation plus
connections between insulin resistance and low protein.

I wish we would focus more on developing a better mental model for the
processes involved in developing diabetes and find some way to effectively
address those and prevent or reverse diabetes, at least in some cases.

But we aren't likely to because there isn't enough cool factor or profit
motive. It makes me crazy.

~~~
downrightmike
Eating too much and the "wrong" things proved valuable over our long trek of
survival. The compulsion to eat calorie heavy foods and to over-eat, because
we can, is fundamental to the animal part of us. People have a lot of
conditioning as well on top of that. The solution isn't as simple as making a
better mental model. You basically need people to allow themselves to be
hungry and be okay with it. Like having a chain smoker stop cold turkey. It
doesn't really work for any meaningful percentage of people.
[https://www.reddit.com/r/WatchPeopleDieInside/comments/biche...](https://www.reddit.com/r/WatchPeopleDieInside/comments/biche1/do_you_look_like_youre_malnourished/?depth=2)

~~~
DoreenMichele
This research contradicts the idea that overeating is the issue:

[https://news.ycombinator.com/item?id=8748147](https://news.ycombinator.com/item?id=8748147)

The existence of Cystic Fibrosis Related Diabetes (CFRD) in a population where
about 90% of patients are quite underweight also contradicts the "fat"
hypothesis.

------
tibbydudeza
Surely they can be reversed engineered and some manufacturer can make them on
the cheap or am I missing something ????.

~~~
DoingIsLearning
You can manufacturer anything but you will not be able to commercialize it
without getting approval (e.g. FDA approval in the US or CE marking in Europe)

Anything that qualifies as a 'medical device' has a plethora of processes and
documentation that must be delivered to the regulatory bodies for that
specific country or region.

------
datamingle
Beta Bionics and others are trying to solve this issue. An automated pancreas.
FDA process is slow & expensive though.

------
ajnin
At this point what stopping those people from going the full DIY path and
building their own insulin pump ? In those days of 3D printers and cheap
electronics this seems like it should be achievable (I'm probably in full
Dunning-Kruger mode here please forgive me). Or even gut one modern commercial
unit to get the fluid part but replace the electronics with something more
automation-friendly.

~~~
pg_bot
Would you trust it with your life?

------
ibeckermayer
The remedy for this insane injustice is to eliminate the FDA’s monopoly on
medical regulation and allow the non-fraudulent production and sale of medical
devices and drugs to consenting adults. No single group has ultimate authority
on what constitutes efficacy and the appropriate amount of risk. So long as
they are not violating our consent by lying about their regulatory process, no
group has a right to conclude for us what we choose to use and consume to
better our health.

Until the point that we are free to think for ourselves, we are all subject to
the fumbling incompetence and cynical malfeasance of the regulatory cartel.
The FDA’s mandate is morally equivalent to the mandate present on every street
corner in every hood in America: “Nobody but me and my gang sells drugs on my
block.” Hence nobody is surprised when their cocaine is laced with baking soda
and sold at 5000% profit margins. Multiply this across all of medicine and it
becomes clear why medicine in America is a schlerotic disaster. Meanwhile the
political parties are only divided on whether or not the taxpayer should foot
the bill...

~~~
AnimalMuppet
How many people know enough to "think for themselves" in this area? How many
are going to know anything beyond what the manufacturers' advertisements say?

> Until the point that we are free to think for ourselves, we are all subject
> to the fumbling incompetence and cynical malfeasance of the regulatory
> cartel.

I've worked for FDA-regulated medical device manufacturers twice. I didn't
_enjoy_ the experience, and no one would call them efficient, but they do not
deserve the venom you are pouring on them.

> The FDA’s mandate is morally equivalent to the mandate present on every
> street corner in every hood in America: “Nobody but me and my gang sells
> drugs on my block.”

You rather badly need to re-calibrate your moral compass. Their mandate is
"Nobody gets to poison people on my block. Nobody gets to create junk devices
that kill people on my block." That is in no way morally equivalent to a gang
of drug dealers.

~~~
ibeckermayer
> How many people know enough to "think for themselves" in this area? How many
> are going to know anything beyond what the manufacturers' advertisements
> say?

For one thing, the fact that other people might not be competent enough to
think for themselves is not a justification for banning those who are from
doing so. For another, I agree that we need regulatory bodies to ensure our
medicine is safe and effective -- just that every individual has a right to
decide for themselves which regulatory body to give authority to. Science is
premised on the providing logic and evidence for one's claims; a scientific
regulatory body would provide logic and evidence for why we should trust their
judgement. Using threats (legislative or otherwise) to force everybody in the
country to trust their judgements is anti-science -- "because I fucking said
so" is not a replacement for logic and evidence.

Additionally, as I stated, the standard I'm proposing includes a justified use
of force for those defrauding others via false advertising claims. If it can
be transparently proven that such claims are unjustified or need further
qualification, then providers can rightfully be forced to change their
advertising.

> I've worked for FDA-regulated medical device manufacturers twice. I didn't
> enjoy the experience, and no one would call them efficient, but they do not
> deserve the venom you are pouring on them.

I'm speaking in broad generalities, of course in any enforced institution
there will be good and bad actors, and the whole spectrum in between. What I'm
railing against is the corrupt political system that allows this sort of
tyranny to stifle human freedom without answering probing philosophical
questions such as "why am I not allowed to disagree with your determinations?"

> You rather badly need to re-calibrate your moral compass. Their mandate is
> "Nobody gets to poison people on my block. Nobody gets to create junk
> devices that kill people on my block." That is in no way morally equivalent
> to a gang of drug dealers.

I've already qualified my position that such criminals should be held
accountable in the court of law, and in this comment qualified it further in
stating that it is reasonable to set up regulatory institutions with processes
to ensure safety; they simply can't justifiably be enforced.

~~~
JohnFen
> For one thing, the fact that other people might not be competent enough to
> think for themselves is not a justification for banning those who are from
> doing so.

Who is banning anyone from doing their own research or thinking? Not the FDA,
as near as I can tell.

------
Causality1
While the FDA has gotten slightly better in recent years it still suffers from
a lack of consumer feedback. They need to be willing to embrace a "move fast
and break things" approach with highly-informed consenting patients. They're
afraid of another thalidomide but they're willing to let an unlimited number
of people die so long as it was disease and not treatment that killed them,
which is such utter cowardice.

~~~
jonfw
I don't trust the "move fast and break things" approach with for-profit
healthcare.

With open source stuff like this, it works because nobody is pushing this tech
for any reason other than it works. But if commercial products were able to
move at this rate, we might see a lot of snake oil because companies can be
pretty effective at producing misinformation.

This isn't a critique of commercialized healthcare because I think it works,
but you do certainly need regulation for it to continue to work

~~~
Causality1
This snake oil market already exists. Supplements. Cupping. Ear candling.
Everything sold by Goop. Essential oils. The market exists and it's already
killing people like the toxic baby food from a couple years ago.

~~~
tptacek
The difference is that Goop-care, by and large, doesn't really do anything,
and the iatrogenic problems are mostly second-order (like, you might get an
infection by putting something they recommend --- excuse me for saying this
--- up your butt). An artificial pancreas is a very serious, active medical
intervention. It has to work, reliably; you can't just hope it will help and
that all its bases are covered.

~~~
kevin_thibedeau
> ... doesn't really do anything

It allows the gullible to avoid seeking real medical care by propping up
delusional notions about how to treat an illness.

~~~
cr0sh
Not just the gullible, but the desperate, too.

There's another class of people that fall for this stuff, and I am not sure
what label (if any) could apply, but I think of people like Steve Jobs.

Arguably, his diagnoses was essentially a death sentence, because few live
long from what he had. That said, I don't think he was necessarily gullible.
Desperate? Maybe - who wouldn't be? But he had immense resources at hand, but
squandered them on treatments known for being snake oil at best.

Maybe fearful would be proper - perhaps coupled with desperation - leading to
easier to take, but less effective (where "less" could equal or be very, very
close to zero) treatments, vs the conventional ones?

I could see that, and emphasize on that choice as well.

