Showing posts with label diabetes. Show all posts
Showing posts with label diabetes. Show all posts

Sunday, January 01, 2017

Wednesday, June 10, 2015

Guest Post on Open Source Hacker Insulin by Anthony Di Franco

Last night I had a minor freak out episode.  My insulin pump alarm sounded at like 1:30 in the morning (I have type 1 diabetes). It was out of insulin (well, the alarm said "No Delivery" which is what it does when it is out of insulin.  So I got up, barely alert, and went to the fridge to get a bottle from my insulin supply.


This is not a usual occurrence.  Usually, I pay attention to the warning alarms saying my pump is running low.  But this time I had ignored them.  I guess I thought it would last through the night.  Oops.  But, in the grand scheme of things, this is not that big a deal.  All I have to do is get a new cartridge for the insulin, fill it, and then rewind the pump and load the new cartridge and prime the pump.  Except, this time, I took out the last bottle I have of insulin for my pump from the fridge, and as I turned around to the kitchen island, my hand carrying the insulin wacked into the fridge door, and the bottle flew out of my hand.  It went up a bit and then headed down to our brutally hard tile floor.  I instinctively reached out with my foot and somehow the bottle landed on my foot, not the floor (this is probably related to the daily soccer I have been doing with my son for the last year or so).  My foot-eye coordination never used to be so good.  And thankfully the bottle did not break.  And I loaded up my pump and primed it and headed back to bed.  But I could not sleep.  I was wondering - what would I do if I ran out of insulin or my last bottle broke.  I guess I would go to a 24 hour pharmacy or an emergency room.  Or I would use the now expired back up insulin I had in the fridge.  And then I wondered, what would I do if I could not get any insulin from a drug store or a hospital.

It seemed to me that the best solution would be to have some sort of freeze dried supply of insulin at home that I could rehydrate in an emergency.  So I started Googling that.  And not much came up that seemed right.   And since I was pretty tired, I onyl spent a few minutes at the computer and then I went back to bed.  But to say this ate at me would be an understatement.

This morning I got up, not as early as normal and took my son to school and then headed off to this workshop that was happening on campus hosted by my ICIS (Innovating Communication in Scholarship) Project on "The Social Life of Medical Data"


And bizarrely and amazingly, the topic of making DIY insulin came up part way through the meeting.


What a coincidence. Although the speaker said he was not going to focus on this, after I posted the Tweet, a response came implying that someone was working on this
Well, wow. I had no idea. It makes sense, but I had no idea. And I wondered, is this anyone I know at the Counter Culture Labs doing this. And a few minutes later the answer came to that when I got an email from Patrik D'haeseleer - a friend, colleague, collaborator, and co-author
Hi Jonathan,  
We're actually trying to get Anthony's piece on Open Source Hacker Insulin guest posted somewhere before our kickstarter for Counter Culture Labs ends tomorrow (under the motto "if it's worth doing, it's worth doing last-minute")  
Would you be interested in hosting it as a guest blog post?

And so I said yes.  And, well, here it is.


Open Source Hacker Insulin

Anthony Di Franco


The effects of untreated diabetes include blindness, impotence, nerve damage and necrosis in the extremities, kidney failure, cardiovascular disease, coma, and death—all good reasons to assure the broad and consistent availability of insulin with decentralized production. Illustration by Zach Weiner of "Saturday Morning Breakfast Cereal."

Hi, I'm Anthony Di Franco. I'm a member of Counter Culture Labs, a biohacker collective in Oakland. (We're currently running a Kickstarter campaign to cement the core capabilities we need to pursue research – more on that below!) I also have type I diabetes. My general interest in biohacking is part of my interest in technological STEMI compression: making technology more efficient and effective and making it work at smaller scales, so that it empowers individuals more and more. My more specific interest is in doing this for the technologies that treat diabetes: mainly those for measuring blood glucose levels and making, purifying, and administering insulin. I've written previously about these topics in Biocoder magazine, among several others, where I suggested a variety of possibilities that might be well-suited to decentralized hackerspace development.


Right now I'd like to focus on insulin production and purification, without which measurement is mostly moot. The goal of producing insulin aligns well with the goals of the broader DIYbio movement for two reasons. First, because recombinant insulin was the first major commercial success of synthetic biology at scale, and set an early example of tools and techniques that shaped the future development of biologics. Second, irrespective of the role they happened to play in history, the tools involved are fundamental to biology and medicine and cover the core functions needed for all serious DIYbio research and other community goals: production and purification of biologics.

Open sourcing treatments is also important because pharmaceuticals in general and insulin and insulin pumping specifically suffer from perverse economic incentives that, at least in part, favor keeping people on the treatments with the most disposable or consumable supplies possible, at the highest price relative to the cost of manufacturing. In terms of the famous razor/blade business model, patients are the razors, and the treatments we need are a long stream of blades with a reliable revenue stream attached. Open source efforts could develop incentives more attuned to encouraging innovations that improve patient outcomes and constitute progress toward a definitive cure, in contrast with the current model which encourages corporations to sit on profits harvested by keeping patients addicted to consumable supplies.

With all that in mind, I'm pleased to announce a new collaboration between members of Counter Culture Labs and Arcturus Biocloud to develop generic insulin. Despite there being no formal barriers to its development, there remains no generic insulin on the market, a perplexing puzzlement pondered in context by Jeremy A Greene in his article in the New England Journal of Medicine. Now, we're preparing to address this problematic situation directly. Arcturus biocloud will provide the means to economically produce the insulin, but we'll still need to develop the means to purify it, eventually to the point where we need not fear the catastrophic consequences of injecting it in impure form – fulminant or chronic allergic reaction to insulin, both of which carry fatal risks. Even though we’re producing the insulin for research purposes only, and certainly aren’t intending to inject it into any living beings in the foreseeable future, a main goal is to demonstrate that we can achieve usable levels of purity in a DIY setting, and to document how we do and share the knowledge. To do that, we'll need to equip Counter Culture Labs with the basics for isolating and purifying biologics, and for that we'll need our kickstarter campaign to succeed. Fortunately, we’ve recently met our base goal, which will let us cover the basics of staying in the building and keeping things up to code. But we’ll still need much more to equip ourselves to work on projects like insulin purification, so we hope we can rely on your support as we pursue our stretch goals.

Please also consider becoming a member and donating via our regular website after our kickstarter ends as that is how we fund DIY insulin and projects like it in the long term.


Anthony Di Franco works at the intersections of complex adaptive systems, economics, and computing. He is a board member of the East Bay biology hackerspace, Counter Culture Labs, where he teaches and organizes events on topics at the intersection of computation and biology. He is also the author of the transgressive historical wuxia manhua, Three Sovereigns.

Wednesday, October 15, 2014

Harvard, hope and hype: the sad reason behind overselling diabetes stem cell work - raising money

Earlier in the week I got all fired up - not in a good way - about a press release and news stories relating to a new paper from Doug Melton on a insulin producing STEM cell study
With a little more discussion I just got more angry


I was angry both about the overselling of the implications of the paper and the fact that the paper was not published in an open manner. This was despite the stated goals of HHMI which funds some of the Melton Lab work.

Friday, August 30, 2013

The saga of my pancreas..feet..microbiome ..blood.. liver - part 1

Well, this just keeps going - on and on and on.  I thought I would be able to write a post when it was all done.  But clearly not.  So below is part 1 of an ongoing tale about me - my microbiome - my pancreas - my feet - my liver - my blood - and more.

Medical Record from my being admitted to
the hospital in 1984.
This particular saga started - I guess - in 1984.  That was when, at 15 years old, I came pretty close to dying before being diagnosed with type I diabetes.

My immune system had betrayed me by killing the beta cells in my pancreas. Thanks a lot immune system. Anyway - this is not supposed to be a post about diabetes. So - flash forward to a few weeks ago. Diabetes for almost 30 years and no major complications to note. Many annoyances. Some minor complications. But overall, I am doing OK.  Obsessive checking of my blood sugar and trying to keep my sugar in control and trying to regularly exercise seems to have kept the diabetes gods appeased. Eyes generally always have looked good. Feet HAD always checked out. Kidneys always seemed good.  Knock on wood - all was as good as I could hope for.

But then ... something came up.  A month and a half or so ago I kept noticing this funny feeling on the bottom of my right foot. Near the toes. Exactly the same kind of feeling one gets when one has a bandaid or tape stuck to my foot (which, given I have two kids both of whom put bandaids on every minor scratch and then leave them lying all over the house and our pool deck - is not too rare).  I thought - maybe the feeling will go away. But it didn't. It was lurking there. And after a week or so I decided I should get my doctor to check it out. So I put in an electronic request for an appointment on 7/21:

Saturday, January 19, 2013

Overselling the microbiome: University Bern press release uses slight of hand to make mouse study seem to be about people

Interesting new paper came out recently on "Sex Differences in the Gut Microbiome Drive Hormone-Dependent Regulation of Autoimmunity."  It is alas in Science so it is not available openly.

Anyway there are some news stories about the article where you can get the gist of it.  Best one is probably the blog post by Christine Gorman: Transplanted Bacteria Turn Up Testosterone to Protect Mice against Diabetes.  The story is pretty interesting.

For those who do not know I have been a bit obsessed about the connection between diabetes and the microbiome for a while.  See my Ted talk for example where I discuss my own personal connection to this issue.




But the science is not what I want to talk about here.  What I want to talk about is how science press releases can just be awful.  The one for this paper is like some sort of con artist's scheme.  Here it is on Science Daily: Good bacteria in the intestine prevent diabetes, study suggests.  First, they lure you in with a headline that, well, fails to mention that the study was in mice.  And then they keep trying to lure you with some lines about humans and their microbes.  In fact, the first two and half paragraphs I think are pretty deceptive.
All humans have enormous numbers of bacteria and other micro-organisms in the lower intestine. In fact our bodies contain about ten times more bacteria than the number of our own cells and these tiny passengers are extremely important for our health. They help us digest our food and provide us with energy and vitamins. These 'friendly’ commensal bacteria in the intestine help to stop the 'bad guys’ such as Salmonella that cause infections, taking hold. Even the biochemical reactions that build up and maintain our bodies come from our intestinal bacteria as well as our own cells.  
Pretty important that we get along with these little bacterial friends... definitely. But as in all beautiful relationships, things can sometimes turn sour. If the bacteria in the intestine become unbalanced, inflammation and damage can occur at many different locations in the body. The best known of these is the intestine itself: the wrong intestinal bacteria can trigger Crohn’s disease and ulcerative colitis. The liver also becomes damaged when intestinal bacteria are unbalanced. 
Research groups led by Professor Jayne Danska at the Sick Children’s Hospital of the University of Toronto and Professor Andrew Macpherson in the Clinic for Visceral Surgery and Medicine at the Inselspital and the University of Bern have now shown that the influence of the intestinal bacteria extends even deeper inside the body to influence the likelihood of getting diabetes. In children and young people, diabetes is caused by the immune cells of the body damaging the special cells in the pancreas that produce the hormone insulin.
Yup - lots and lots of stuff about people.  Which is fine.  I like people.  But the thing is. The paper is about mice.  So lines like "have now shown that the influence of the intestinal bacteria extends even deeper inside the body to influence the likelihood of getting diabetes" are kind of misleading because so far there has been no mention of mice and that line is they only true for mice, not people.  And then they wrap up this section with another line about people, clearly trying to imply that the "have now shown ..." part is relevant to people.

And then, finally, they turn to mice.
By chance, 30 years ago, before the development of genetic engineering techniques, Japanese investigators noticed that a strain of NOD laboratory mice tended to get diabetes. These mice (also by chance) have many of the same genes that make some humans susceptible to the disease. With the help of the special facilities of the University of Bern and in Canada, these teams have been able to show that the intestinal bacteria, especially in male mice, can produce biochemicals and hormones that stop diabetes developing.
And then they go back to people.
Diabetes in young people is becoming more and more frequent, and doctors even talk about a diabetes epidemic. This increase in diabetic disease has happened over the last 40 years as our homes and environment have become cleaner and more hygienic. At the moment, once a child has diabetes, he or she requires life-long treatment. 
"We hope that our new understanding of how intestinal bacteria may protect susceptible children from developing diabetes, will allow us to start to develop new treatments to stop children getting the disease," says Andrew Macpherson of the University Bern.
Wow.  So in a press release about a paper that is about mice, there are three sentences about mice and the rest are about people.  The thing is, in case you don't know - mice are not the same as people.  Just saying.  And for trying to overplay the connection of their work to humans, I am giving the writer's of this press release my coveted Overselling the Microbiome Award.

Past posts about this award include:


Wednesday, September 26, 2012

Diabetes and the microbiome - some hype and some caution - in the same stories

A new paper is getting some press on a link between type II diabetes and the microbiome.  The paper is here.  The abstract of the paper reads:
Assessment and characterization of gut microbiota has become a major research area in human disease, including type 2 diabetes, the most prevalent endocrine disease worldwide. To carry out analysis on gut microbial content in patients with type 2 diabetes, we developed a protocol for a metagenome-wide association study (MGWAS) and undertook a two-stage MGWAS based on deep shotgun sequencing of the gut microbial DNA from 345 Chinese individuals. We identified and validated approximately 60,000 type-2-diabetes-associated markers and established the concept of a metagenomic linkage group, enabling taxonomic species-level analyses. MGWAS analysis showed that patients with type 2 diabetes were characterized by a moderate degree of gut microbial dysbiosis, a decrease in the abundance of some universal butyrate-producing bacteria and an increase in various opportunistic pathogens, as well as an enrichment of other microbial functions conferring sulphate reduction and oxidative stress resistance. An analysis of 23 additional individuals demonstrated that these gut microbial markers might be useful for classifying type 2 diabetes.
Seems pretty reasonable.  All they say there is that they found associations between bacteria and diabetes.  That is interesting but they do not seem to present any evidence about a causal connection.  Perhaps people who get type II diabetes end up then having their microbiome shift.  Perhaps a shift in the microbiome causes type II diabetes.  Or perhaps something else (e.g., excessive inflammation) causes both type II diabetes and microbiome shifts.  Who knows.

But alas a bit of hype crept into some of the the news stories.  And it seems that the scientists behind the study are responsible for some of this hype.  For example, consider the article Changes in Intestinal Bacteria Linked to Type 2 Diabetes - US News and World Report.  One quote is a bit much for me:
"I think our study provides many targets for disease prevention and treatment through gut microbiotia in the near future," said study senior author Jun Wang, executive director of the Beijing Genomics Institute in Shenzhen, China.
Fortunately the reporter who wrote this story does a very good job of providing cautious interpretations.  See for example:
"There's no way right now that you can say there's a cause-and-effect relationship. It could be that the patients with diabetes were treated with drugs that changed their gut flora. Or maybe they ate differently? This is an interesting hypothesis -- that gut bugs could influence diseases states -- but it's far from proven," said Dr. Stuart Weinerman, associate chief of the division of endocrinology at North Shore University Hospital/Long Island Jewish Medical Center in New Hyde Park, N.Y.
Also see stories like Gut bacteria could cause diabetes from Science Codex.  The title alone makes me want to cry.  Some quotes as well as discussion in that article also seem, well, not cautious enough.
The research, which was recently published in the scientific journal Nature, also demonstrated that people with type 2 diabetes have a more hostile bacterial environment in their intestines, which can increase resistance to different medicines.
Definitely not buying this "hostile" environment claim.  Fortunately as with the US News story, there is some caution presented
"It is important to point out that our discovery demonstrates a correlation. The big question now is whether the changes in gut bacteria can affect the development of type 2 diabetes or whether the changes simply reflect that the person is suffering from type 2 diabetes."
 So - the stories seem to actually be doing an OK job with the correlation vs. causation issue I have complained about many times.  And though some of the scientists may be pushing a bit of overinterpretation the reporters and even the press releases have some decent cautionary statements.


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