
A DIY diabetes kit - kawera
http://www.bbc.com/news/technology-36711994
======
jawngee
My son was just recently diagnosed type 1 about 4 months ago (exactly on his
1st birthday, shitty birthday).

Unfortunately, we live in Vietnam where access to even basics like pumps, let
alone CGM, is non-existant, or incredibly hard. We had to fly to Singapore to
get a pump, and then fly back every three months to get new supplies. CGM is a
pipe dream.

One thing this article doesn't touch on, which is unfortunate, is how much of
a nightmare modern medical systems make diabetes. In the US, insurers decide
what pumps you get, what CGM device you might be able to get, even what
insulin you are using. I see it everyday on the support groups I'm on. And the
costs are astronomical. In Vietnam, we get our son's insulin for $12 a vial.
The same vial in the US is about $400 or more (insured price). Test strips in
the US can cost $1-2 per strip; we spend about 20-30 cents per.

I am very hopeful about the bionic pancreas though, a device that does what
these DIY systems do; but also delivers glucagon as well as insulin. There are
also some stem cell trials that are very interesting too. I'm hoping that by
the time this kid hits college, his care is automated as possible, if not
outright cured.

~~~
srameshc
I still don't understand why insulin is so regulated and expensive in US. I
feel sorry for people with Type 1, Type 2 who many a times have to skip their
insulin dose. I think it should be freely available over the counter and there
should be some cheap availability for such a common drug.

~~~
jacalata
It seems relatively defendable - it is far, far more dangerous than many
prescription only drugs (eg: birth control), and most people will not be able
to work out how much they need without seeing a doctor first.

~~~
brudgers
My understanding is that Dana Lewis developed the pre-cursors to OpenAPS
because she had to perform dosage calculations several times a day. Often this
was in the middle of the night. And getting it wrong could be fatal.

Going further, the calculations are rule of thumb and generic and each person
has to make adjustments based on intuitions about their metabolism, what they
ate, what they plan to eat, what activity they anticipate, and when they last
dosed. It's every day, for the rest of their life.

[Source]

Scott Hanselman interviews OpenAPS hacker Dana Lewis:

[http://www.hanselminutes.com/514/the-open-artificial-
pancrea...](http://www.hanselminutes.com/514/the-open-artificial-pancreas-
system-openaps-project-with-dana-m-lewis)

~~~
jacalata
Yes, I have lived with relatives with diabetes and understand that it's quite
complex. I don't think anyone with diabetes would suggest that it should be ok
to just start taking insulin without a doctor involved, which is (to my
understanding) the basic argument for whether a drug should require a
prescription or not. You can make a separate argument about whether it should
be a longer prescription, or about the failings of a system where seeing a
doctor at all is prohibitive for some people, or the fact that the medication
is outrageously expensive (which is not directly related to the need for a
prescription at all).

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timomer
Hello all,

There are many areas the article does not cover, but this is expected when
writing space is limited. Main areas that I feel need more coverage...

1) The community itself, it is overwhelming to see how much work has been done
by people in their spare time. Many of these developers go unnamed and provide
some amazing work - I would not be able to complete my app without this
community, I'm just putting the puzzle of community work together and filling
in the blanks where needed.

2) Access to tech, it is almost insulting to see how may Diabetics cannot
access Pumps and CGMs, or can access one and not the other. The cost for such
systems and limited access is not justified.

3) Why, when we do own the required tech purchased from our own money do we
then have to "hack" such devices to access the data that they have about MY
body!?

4) The dangers of the community work, this is no riskier I say than commercial
systems but this subject must be openly discussed in the community to be sure
we understand and limit possible risks

5) I agree with the comments about glucagon, this should ideally be a worse
case treatment. Why do we need a system that can provide glucagon when early
alerts from an APS can notify the patient that a carb treatment is needed.
Let's stop trying to find a 100% solution and produce something that covers
60% of our needs now

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oskarpearson
Good to see this here. I'm one of the developers (though more on the radio
comms side, rather than on the glucose control side. See
[http://github.com/oskarpearson/mmeowlink/wiki](http://github.com/oskarpearson/mmeowlink/wiki)
for info).

My wife's been on the software since last September, and it's made a huge
difference to us.

If you've any questions, ask here or grab me on twitter at @oskarpearson

~~~
monkmartinez
If I wanted to get something like this setup for a homeless person... what
would I need to do?

~~~
oskarpearson
The biggest problem is going to be expense, followed by reliability and power
when out-and-about.

I'm not sure where you are, but in the USA compatible pumps probably start at
around $1,000. That doesn't include the monthly cost of the CGMS sensors,
which is also significant.

If you're in a country with universal healthcare, and the healthcare provider
is willing to cover the CGMS sensors you might have success. (Some govt
healthcare services will cover CGMS sensors for people that can't tell when
they are hypoglycemic.)

If the person with diabetes (PWD) is very mobile, reduced size and weight will
have to be at the forefront of your thinking. However, that requires the most
expensive OpenAPS hardware (the Intel Edison - see the mmeowlink wiki).

If the PWD is ok with a larger device due to a bigger battery, you could use
cheaper hardware (Pi zero and a 20,000mah battery). It'll still need daily
charging, though.

One idea: you might find running things overnight only might have an
advantage, depending on whether they have a stable relationship with a
shelter. The system would then cover them for a reasonable amount of time
every day without the challenge of waterproofing, batteries, etc.

If this is feasible, the best place to start is with the simplest config, as
documented at
[https://github.com/openaps/docs/blob/master/docs/docs/walkth...](https://github.com/openaps/docs/blob/master/docs/docs/walkthrough/phase-0/hardware.md)

Let me know if I can be of any support. My details are in my profile.
Alternatively, you can find us on the intend-to-bolus channel on gitter.

~~~
monkmartinez
I am in Arizona, and I will be in touch. I have some ideas (they could be
shit, or they could be really good). My details are in my profile as well.

------
brudgers
Open Artificial Pancreas home: [https://openaps.org/](https://openaps.org/)

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robobro
Type 1 diabetic here: diagnosed at age 14, almost 22 now.

I use xdrip with a CGM and I have to say, it's been the best thing for my care
(after insulin, lol). The main challenge of diabetes is keeping your blood
sugar in range, not too high, and not too low, and getting it back in range if
it deviates too far. Blood sugars dropping too low during exercise is a major
concern as it can result in seizures and worse.

Thanks to the combination of my dexcom G4 + Android + Xdrip + smartwatch, I
can always get a pretty good estimate of where my glucose is, and thus
minimize the risks and harm from my (chronic, uncurable) condition. Definitely
a great case for open source development for propreitary hardware. The CGM has
helped me even more than my $10,000 insulin pump :X

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hising
Open question - What is the actual cost of living with Diabetes type 1 in the
US with a good health insurance? The reason I am asking is I have a 10-year
old son with type 1 and we are thinking of moving to US (from Sweden) and
would like to estimate the actual cost of living with diabetes in the US in
order to make a real life calculation of what it would actually cost us per
month. Any tips would be appreciated - if you wanna take it privately -
message me on Twitter (@hising) or send me an email - mattias at ridgestreet
dot se

~~~
Bromskloss
Would an insurance ever cover something that is already known? That at least
doesn't sound like an insurance in the usual sense of the word.

~~~
0xcde4c3db
In the US, "health insurance" mostly isn't about actual insurance, it's just
part of the evolved process of obtaining care with a degree of oversight and
(semi-)centralized records. You _can_ pay out-of-pocket, in much the same way
that you _can_ represent yourself in court: nobody can deny you the option,
but the system isn't really set up to operate that way and something will
probably go wrong when you try it.

~~~
coredog64
That's not entirely true. When I was uninsured, I was able to negotiate
significant cash discounts with many out-patient providers. They had a very
good idea what the overhead of billing an insurance provider was and were
willing to lop that off their charge.

Where it gets tricky is with in-patient care. There I would agree that it's
more like representing yourself in court.

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erikb
Interesting how they discuss risks in open source. If one can make a guess
from other software it is very likely that open source at least in the future
will outperform proprietary solutions. Standardization organizations should
start to think about how to make their certification processes attractive for
FOSS projects, imo.

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onetwotree
My girlfriend has type 1 diabetes and uses this. It's been a huge improvement
in her life - as others have mentioned, it's really like the best thing since
insulin.

One thing that's been really awesome to see is how T1D patients and parents
with little or no experience with FOSS have taken this stuff: "You mean you
guys just made this amazing thing 100% for free?!?!?!". It's like watching the
birth of open source all over again :-)

The T1D hacking movement is huge - for example, my GF and I recently replaced
the batteries in her CGM transmitter (you're not supposed to be able to do
this, so it involved a dremel and solder and playing the tiny fingers game).
The older transmitters last about 6 months, and then you have to order them
through a horrible medical supply company that knows you're not their real
customer (your insurance company and device manufacturers are) so this is a
big deal.

An even bigger deal: the newer Dexcom transmitters turn off after 3 months.
Dexcom claims that new features mean they need more juice, but T1D hackers
reversing the new protocol discovered that the app they come with _turns them
off_. Fortunately, it seems possible to turn them back on without dremels and
the tiny finger game.

A closed loop APS is the next step for us :-)

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whatnotests
I had the chance to meet and interview the author of the open source tool (Tim
Omer). Super smart, motivated and clearly capable.

I hope his work can help many people who are in need of this type of tool.

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tiatia
Any investor here with an interested in diabetes/medical devices?

------
known
It's about type 1 diabetes

