"What am I doing?", my endocrinologist said to herself, out loud. "This goes against all of my training! But, it's what your numbers are telling me..."
Sounds right.
It seems like my insulin needs have never quite matched up with what's considered "standard", whether it's the ratio of daily bolus to basal insulin, the increase in basal rates while I'm sleeping (my body won't even look at insulin while I'm dreaming; it's that resistant), or the number of basal rates I'm running throughout the day (they once totaled 12 rates in one day, and it worked really well at the time).
It doesn't surprise me that my endo (whom I adore - I've only had two appointments with her and I'd already like to send her a basket of puppies and chocolate, though not in the same basket because then I'm sending her a basket of dead puppies, and what the hell kind of tangent is this) is needing to do things a bit differently to keep me in range - and you know what? So far, it's working pretty well.
But while basal rate changes help, they don't do all of the work for me. I still see myself trending down several times a day, but it sort of works out for now since pregnancy has brought me a bottomless pit for a stomach. "Oh! Cool! I can eat again." But things change sporadically, randomly, and often - much like Batman watching over his beloved Gotham, I too must remain vigilantly attentive to what's going on around (and in) me.
I'm back in super-obsessive mode, which means I'm clicking the Dexcom button every few minutes (even though I know it only updates every five) and doing a finger stick about every hour and a half - but sometimes I'll get crazy and wait TWO HOURS YOU GUYS! I haven't gone through this many lancets in... ever? My fingers are losing their patience with me swiftly.
What would be reeeeeally wonderful right about now is this:
That's the Artificial Pancreas system that Tom Brobson, JDRF National Director of Research Investment Opportunities (and star of this YouTube video detailing his experience using this thing in a real-world setting) brought along with him to a JDRF breakfast here locally on Wednesday, that I felt very lucky to be able to attend. It's not perfect - no technology is - but having a system that would look out for me and minimize the highs and lows? I'd take it in a heartbeat.
Until then, I will do my throw my Bat-darts at this ever-moving target called diabetes, in the hopes that I can hit something more often than not.
Showing posts with label Artificial Pancreas. Show all posts
Showing posts with label Artificial Pancreas. Show all posts
Thursday, January 31, 2013
Friday, November 4, 2011
Filling Gaps And Taking Risks.
On Sunday, I attended a JDRF Research Update Event in Omaha, Nebraska. Speakers included Linda Johnson, MPA, CLP (Senior Director of Strategic Alliances) and Dr. Sanjoy Dutta PhD (Director of Glucose Control; Treatment Division), and though some of what was covered were things I'd already learned from previous JDRF webcasts and announcements, I did pick up a few things to think about. It's also nice to be able to talk to folks in person, so there's that. :)
Before I get into the recap, I want to say that I wish more people would have/could have attended. It's not very often that a Midwest city like Omaha gets to have people of this caliber to come speak. I wish the event could have been better promoted (and with much more notice given), as I felt the 40 or so of us that attended were not nearly as many who would have, had they know about this (and had they realized how unique this opportunity was). Attendance was low, and for that, I'm a bit sad.
Anyway. *cough* Onto the recap.
Linda Johnson spoke about the alliances JDRF has forged with governments, with other disease advocacy organizations, and with industry. She acknowledged that this is a relatively new direction for JDRF (she dated the beginning of such alliances as 2005), and emphasized that these partnerships and agreements can help us more expediently reach better treatments and eventually a cure. Alliances not only can provide a way to pool resources (monetary, knowledge and capabilities) to accomplish what one organization alone may not, they also help minimize unnecessary duplication in the areas of research and development.
She mentioned partnering with the Canadian government to secure funding for research ("Hey, if they want to give us $20M to do clinical trials there, we're not turning that down!"), and spent a great deal of her time speaking about the various industry alliances JDRF has entered into.
(I should also note that she made sure to point out that while many have expressed concern over the money JDRF puts towards these ventures, in the last fiscal year [FY11], just 10% of research funding when to industry partnerships. To me, that's a rather small amount, considering what it COULD be.)
There was talk of Merck/SmartCells, Amylin, Lilly and the University of Geneva research lab, Selecta BioSciences (whose focus, prior to JDRF's influence, had been on nicotine control) and iCo (who is working on repurposing existing meds for the treatment of diabetic macular edema). Linda pointed out that industry partnerships are critical to JDRF's mission: "You reach a point where you can only take your research so far, and need an industry partner to take things to market". (For more on those alliances, please click on those hyperlinks.)
Next up: Dr. Dutta. (I'm also going to say here that I think JDRF has done a great job of putting researchers who are able to put things in understandable terms in touch with the diabetes community. It can't be easy to translate things so eloquently, but people like Dr. Dutta are able to do just that.)
The work Dr. Dutta is involved in (treatment therapies) has two goals: to restore glucose regulation (think Artificial Pancreas [AP] and Glucose-Responsive Insulins [GRI]), and to discover, develop and deliver therapeutics that prevent, reverse and treat complications in all stages and all individuals with type 1. He talked a bit about the AP, and the recent news that patients in Europe have, for the first time ever, successfully used the AP in a real-world setting - that's big news!
He addressed some of the "gaps" that need to be filled when it comes to the physiology of a person with type 1 diabetes. Insulin production isn't the only thing "broken" - the production (and body's decisions for appropriate use) of hormones like glucagon, amylin and leptin are also affected. In a person with type 1, glucagon is present in the "wrong place at the wrong time" - meaning that it's missing when we're low and present when we're high. The fix here can't be to simply shut off glucagon production; a balance of suppressing and activating is needed.
Insulin delivery was another key topic. Dr. Dutta pointed out that current insulin delivery methods, which have insulin arriving in the body subcutaneously (meaning, under the skin), don't make a lot of sense. Think about it - in a healthy human body, does insulin get produced under the skin? (Nope - pancreas.) Does it do it's work under the skin? (Nope - it has to get to the blood stream.) Intra-dermal delivery techniques (which would engage more blood vessels) would also eliminate some of the more common complaints we insulin pump users have, as no tubing would mean no occlusions, kinks, etc.
Another idea along those lines would be what's called an InsuPatch. Have you ever taken insulin and soon after gotten in a hot shower or hot tub? Insulin works REALLY fast then, right? Well, same idea - put a bandaid-like warming device around pump infusion sites. (I had to laugh when Dr. Dutta was explaining this one - "This is so simple; we looked at each other and said, 'Why didn't we think of this before??'".)
And lastly, the "high risk" project: glucose-responsive insulin (GRI). What needs to get accomplished here is that GRI needs to mimic physiology (deliver insulin when and where its needed), be device-free (limiting fingersticks, replacing insulin pumps, and reducing human intervention), and also address the critical gaps in type 1 treatment. Basically? It needs to reduce the burden of managing the disease, big time. (That... yeah. That would be nice.)
You may already be aware, but JDRF introduced a prize incentive related to GRI as a way to engage a new audience of experts. Dr. Dutta explained that while offering a prize in this arena is unorthodox, it was necessary: "If this were easy to develop, we'd have it already. People have spent time and effort trying to develop GRI but keep failing at it. We need people outside of the "usual suspects", and offering this prize can help us engage with those people."
Dr. Dutta left us with these thoughts: if something works (treatment-wise), jump on it. Your best defensive strategy is knowledge, so do your research. You can't expect your medical team to know about everything that's out there, so be an advocate for your own health by being engaged in learning about your disease.
And in summary: all of these technologies may not be suitable for each patient. We all have our own unique pathology, and we hope to get to a position where we can pick and choose from these advanced treatments, so that everyone can do what works best for them as individuals.
Thanks again to Linda Johnson and Dr. Sanjoy Dutta for spending a little bit of time with us here in the Cornhusker state. I hope they come back again soon.
Disclosure: JDRF did not specifically ask me to attend this event or talk/write about it. I was not compensated for my time there or for writing this recap. I am just super nerdy and like to learn (and then share) things like this. As per uzh, my opinions (and translation/recall of events) are my own.
Before I get into the recap, I want to say that I wish more people would have/could have attended. It's not very often that a Midwest city like Omaha gets to have people of this caliber to come speak. I wish the event could have been better promoted (and with much more notice given), as I felt the 40 or so of us that attended were not nearly as many who would have, had they know about this (and had they realized how unique this opportunity was). Attendance was low, and for that, I'm a bit sad.
Anyway. *cough* Onto the recap.
Linda Johnson spoke about the alliances JDRF has forged with governments, with other disease advocacy organizations, and with industry. She acknowledged that this is a relatively new direction for JDRF (she dated the beginning of such alliances as 2005), and emphasized that these partnerships and agreements can help us more expediently reach better treatments and eventually a cure. Alliances not only can provide a way to pool resources (monetary, knowledge and capabilities) to accomplish what one organization alone may not, they also help minimize unnecessary duplication in the areas of research and development.
She mentioned partnering with the Canadian government to secure funding for research ("Hey, if they want to give us $20M to do clinical trials there, we're not turning that down!"), and spent a great deal of her time speaking about the various industry alliances JDRF has entered into.
(I should also note that she made sure to point out that while many have expressed concern over the money JDRF puts towards these ventures, in the last fiscal year [FY11], just 10% of research funding when to industry partnerships. To me, that's a rather small amount, considering what it COULD be.)
There was talk of Merck/SmartCells, Amylin, Lilly and the University of Geneva research lab, Selecta BioSciences (whose focus, prior to JDRF's influence, had been on nicotine control) and iCo (who is working on repurposing existing meds for the treatment of diabetic macular edema). Linda pointed out that industry partnerships are critical to JDRF's mission: "You reach a point where you can only take your research so far, and need an industry partner to take things to market". (For more on those alliances, please click on those hyperlinks.)
Next up: Dr. Dutta. (I'm also going to say here that I think JDRF has done a great job of putting researchers who are able to put things in understandable terms in touch with the diabetes community. It can't be easy to translate things so eloquently, but people like Dr. Dutta are able to do just that.)
The work Dr. Dutta is involved in (treatment therapies) has two goals: to restore glucose regulation (think Artificial Pancreas [AP] and Glucose-Responsive Insulins [GRI]), and to discover, develop and deliver therapeutics that prevent, reverse and treat complications in all stages and all individuals with type 1. He talked a bit about the AP, and the recent news that patients in Europe have, for the first time ever, successfully used the AP in a real-world setting - that's big news!
He addressed some of the "gaps" that need to be filled when it comes to the physiology of a person with type 1 diabetes. Insulin production isn't the only thing "broken" - the production (and body's decisions for appropriate use) of hormones like glucagon, amylin and leptin are also affected. In a person with type 1, glucagon is present in the "wrong place at the wrong time" - meaning that it's missing when we're low and present when we're high. The fix here can't be to simply shut off glucagon production; a balance of suppressing and activating is needed.
Insulin delivery was another key topic. Dr. Dutta pointed out that current insulin delivery methods, which have insulin arriving in the body subcutaneously (meaning, under the skin), don't make a lot of sense. Think about it - in a healthy human body, does insulin get produced under the skin? (Nope - pancreas.) Does it do it's work under the skin? (Nope - it has to get to the blood stream.) Intra-dermal delivery techniques (which would engage more blood vessels) would also eliminate some of the more common complaints we insulin pump users have, as no tubing would mean no occlusions, kinks, etc.
![]() |
| Graph of how insulin works in a non-diabetic person (that's in green) and someone administering a current insulin (in pink). Notice how we're missing that big spike of insulin at the start? |
And lastly, the "high risk" project: glucose-responsive insulin (GRI). What needs to get accomplished here is that GRI needs to mimic physiology (deliver insulin when and where its needed), be device-free (limiting fingersticks, replacing insulin pumps, and reducing human intervention), and also address the critical gaps in type 1 treatment. Basically? It needs to reduce the burden of managing the disease, big time. (That... yeah. That would be nice.)
You may already be aware, but JDRF introduced a prize incentive related to GRI as a way to engage a new audience of experts. Dr. Dutta explained that while offering a prize in this arena is unorthodox, it was necessary: "If this were easy to develop, we'd have it already. People have spent time and effort trying to develop GRI but keep failing at it. We need people outside of the "usual suspects", and offering this prize can help us engage with those people."
Dr. Dutta left us with these thoughts: if something works (treatment-wise), jump on it. Your best defensive strategy is knowledge, so do your research. You can't expect your medical team to know about everything that's out there, so be an advocate for your own health by being engaged in learning about your disease.
And in summary: all of these technologies may not be suitable for each patient. We all have our own unique pathology, and we hope to get to a position where we can pick and choose from these advanced treatments, so that everyone can do what works best for them as individuals.
Thanks again to Linda Johnson and Dr. Sanjoy Dutta for spending a little bit of time with us here in the Cornhusker state. I hope they come back again soon.
Disclosure: JDRF did not specifically ask me to attend this event or talk/write about it. I was not compensated for my time there or for writing this recap. I am just super nerdy and like to learn (and then share) things like this. As per uzh, my opinions (and translation/recall of events) are my own.
Tuesday, September 20, 2011
Tune In And Comment.
There are a couple of very important things happening today, and I hope you'll consider engaging in one or both.
First, today is day two of the U.N. Summit on non-communicable diseases (NCDs), and the United Nations website has a live webcast going. I tuned in yesterday while I was at work (sound only), and I thought it was definitely worth the listen. That makes me either super nerdy or an engaged stakeholder in the future of diabetes care - either way, I'm okay with it. Head over to the webcast by clicking here. Note: you may need to click on a different "channel" than the one it defaults to - so watch out for that, and the webcast doesn't begin until 10:00am EST, so don't panic if you tune in and it's just video of an empty chair. :) (And if you missed Monday's sessions - good news! The U.N. archives their webcasts, so you can go back and watch whatever interests you.)
And second, today is the LAST DAY you can submit comments to the FDA regarding the Low-Glucose Suspend device (the first step in the Artificial Pancreas Project). Comments are due at 11:59pm TODAY. My friend Bernard wrote a great post about this already, and I hope you'll consider sharing your own thoughts with the FDA on why this technology needs to be pushed through the approval process as expediently as possible. As a fellow advocate says, "This is truly the absolute best way to have your voice heard and to be part of the regulatory process at FDA. When you submit comments, they are taken very seriously. Each and every comment is read, and all comments become part of the federal register. Your comments, if you submit them, become part of the file that each member of the committee receives, along with all of the data, statistics, information about trials, and all of the medical documentation. What I'm trying to say is that your comments are very powerful, and could possibly (and they have done so in the past) sway the decision of some of the members of the committee."
Make your voice heard!
Make your voice heard!
Monday, March 21, 2011
DOC in DC: Part Two.
What made JDRF's Government Day event so memorable?
Dude, where do I even start with this?
I want to start with the end - our meetings with our state's Senators and Representatives. But before I get to those, I should tell you about some of the informational sessions we had with JDRF staff and researchers.
The JDRF Government Relations (GR) staff in D.C. did a great job of giving us the information we needed to be able to talk to our members of Congress. We heard from not only the GR staff, but also from Dr. Richard Insel, M.D. (Chief Scientific Officer at JDRF) and Dr. Judith E. Fradkin, M.D. (Director, Division of Diabetes, Endocrinology, and Metabolic Disease for the NIKKD at the National Institutes of Health [NIH]) about where we are in terms of research on prevention, treatment, and a cure for diabetes.
We found out interesting tidbits, like how the U.S. Department of Defense funded $20M for research into continuous glucose monitors - because the stress of war elevates the blood glucose levels of soldiers, and when your blood glucose levels rise, you don't heal as quickly.
We talked about the AP being important not just for the benefits of living healthier now with diabetes, but also because a healthy body (with tightened glycemic variations) will be more accepting of a biological cure. I hadn't thought of it in that way before - but it makes sense.
It was also brought up that the AP can benefit not only those with type 1, but those with type 2 as well. We all struggle with hyperglycemia, and the AP would help mitigate that for us all.
And then, we heard about why the Artificial Pancreas (AP) is stalling in its progress with the Food and Drug Administration (FDA). Much of what was presented was familiar to me, as I do tune in to those webcasts when I can, but they made a good point: not only will the artificial pancreas be the first of its kind in terms of that particular technology, its also a device AND a drug. Getting either one of those approved takes time, but both? It's a double-whammy of a paradigm shift.
That lag - that hesitation of the FDA to approve the AP for out-patient, real world trials - is why we were in our suits and big JDRF stickers, talking to Congress. (Seriously, loved those stickers. You could see them across the Hill, and wave frantically to your fellow JDRFers. "Heeeey! Someone I know, kinda!") A letter was sent out to all Senators and Representatives the week before we were there, urging them to co-sign a letter to the Commissioner of the FDA. This letter to the FDA asks them to "quickly and seriously consider draft guidance (effectively a research framework) submitted by JDRF and other leading clinical experts, and to keep the process moving so that these new technologies can be further tested and made available in the near future".
(We're to the point of needing to move from in-hospital clinical trials - which were very successful - to out-patient clinical trials. And we need the FDA's approval to be able to make that transition.)
Each meeting we had was a little bit different. Brian (who was the other volunteer there from the Cornhusker state, and thankfully knew his way around D.C. much better than I did) and I met with two of Nebraska's Representatives and a staff member for the third, and a staff member for one of our Senators. (Brian met with the other Senator on his own - more on that story later.) Everyone we met with was very cordial, and open to hearing what we were there to talk about. Some offices even had a JDRF photo frame out - though, maybe they knew we were coming. One Congressman in particular was so interested in the technology we were bringing up that he started asking me questions about it!
That's one thing I had forgotten in my nervousness - that listening to constituents is their job. It's easy to feel intimidated and get yourself freaked out about talking to someone in that position. You fear that you'll get there and forget your name, or what you wanted to say. You feel like you're just one small voice in a big ocean of problems and concerns that this person listens to. You wonder if your one, small voice can ever be heard above all that.
The truth is that once I got there and shook their hand, the nerves melted away, for the most part. The Politician is just another human being; The Office becomes just another room. (As the saying goes, they put their pants on one leg at at time, too.) You have their attention, and you have an army of supporters behind you (whether that be the other advocates in attendance that weekend, or the overwhelmingly wonderful number of you who followed the #JDRFGovDay tweets and lent us your encouragement and support). The hardest step is getting yourself to go do it, and now that you're there, you just talk.
And talk, I did. I talked about how living with diabetes for a quarter century doesn't make me an expert at living with it - that no amount of time can guarantee that knowledge. I talked about the costs of time and emotion that diabetes charges me. I talked about how today's technology is great, but it's not good enough. I talked about how an artificial pancreas could change my life - and wondered (out loud) what the heck I'd do with my free time, if I wasn't worrying about diabetes so much. (Pretty sure I actually used the term "diabetes brain" in one meeting - I hope they knew what I meant.) And I acknowledged that while a device automatically deciding on and controlling insulin delivery could be dangerous, living with diabetes is dangerous. And we can't afford to keep waiting.
That's what being an advocate is: speaking up when it's needed, not just when it's convenient. Having the audacity to put our voices out into the world, and to tell our own stories.
It's what we do here in the diabetes online community, and I hope it can also be what we bring out into the off-line world. Interested in signing up as a JDRF advocate? You can find more information here.
Disclosure: As always, these opinions are my own. JDRF has not asked me to blog about the Government Day event, nor have they asked me to promote their advocacy program. (Though I do volunteer on my local chapter's GR committee - so it's this thing I'm trying out.) As someone who was so proud to represent our community and cause during those four days (and always!), I'd be remiss not to recount what I learned, and how I interpreted the event.
Dude, where do I even start with this?
I want to start with the end - our meetings with our state's Senators and Representatives. But before I get to those, I should tell you about some of the informational sessions we had with JDRF staff and researchers.
The JDRF Government Relations (GR) staff in D.C. did a great job of giving us the information we needed to be able to talk to our members of Congress. We heard from not only the GR staff, but also from Dr. Richard Insel, M.D. (Chief Scientific Officer at JDRF) and Dr. Judith E. Fradkin, M.D. (Director, Division of Diabetes, Endocrinology, and Metabolic Disease for the NIKKD at the National Institutes of Health [NIH]) about where we are in terms of research on prevention, treatment, and a cure for diabetes.
We found out interesting tidbits, like how the U.S. Department of Defense funded $20M for research into continuous glucose monitors - because the stress of war elevates the blood glucose levels of soldiers, and when your blood glucose levels rise, you don't heal as quickly.
We talked about the AP being important not just for the benefits of living healthier now with diabetes, but also because a healthy body (with tightened glycemic variations) will be more accepting of a biological cure. I hadn't thought of it in that way before - but it makes sense.
It was also brought up that the AP can benefit not only those with type 1, but those with type 2 as well. We all struggle with hyperglycemia, and the AP would help mitigate that for us all.
And then, we heard about why the Artificial Pancreas (AP) is stalling in its progress with the Food and Drug Administration (FDA). Much of what was presented was familiar to me, as I do tune in to those webcasts when I can, but they made a good point: not only will the artificial pancreas be the first of its kind in terms of that particular technology, its also a device AND a drug. Getting either one of those approved takes time, but both? It's a double-whammy of a paradigm shift.
That lag - that hesitation of the FDA to approve the AP for out-patient, real world trials - is why we were in our suits and big JDRF stickers, talking to Congress. (Seriously, loved those stickers. You could see them across the Hill, and wave frantically to your fellow JDRFers. "Heeeey! Someone I know, kinda!") A letter was sent out to all Senators and Representatives the week before we were there, urging them to co-sign a letter to the Commissioner of the FDA. This letter to the FDA asks them to "quickly and seriously consider draft guidance (effectively a research framework) submitted by JDRF and other leading clinical experts, and to keep the process moving so that these new technologies can be further tested and made available in the near future".
(We're to the point of needing to move from in-hospital clinical trials - which were very successful - to out-patient clinical trials. And we need the FDA's approval to be able to make that transition.)
![]() |
| The rotunda in the Longworth (House) office building. |
That's one thing I had forgotten in my nervousness - that listening to constituents is their job. It's easy to feel intimidated and get yourself freaked out about talking to someone in that position. You fear that you'll get there and forget your name, or what you wanted to say. You feel like you're just one small voice in a big ocean of problems and concerns that this person listens to. You wonder if your one, small voice can ever be heard above all that.
The truth is that once I got there and shook their hand, the nerves melted away, for the most part. The Politician is just another human being; The Office becomes just another room. (As the saying goes, they put their pants on one leg at at time, too.) You have their attention, and you have an army of supporters behind you (whether that be the other advocates in attendance that weekend, or the overwhelmingly wonderful number of you who followed the #JDRFGovDay tweets and lent us your encouragement and support). The hardest step is getting yourself to go do it, and now that you're there, you just talk.
And talk, I did. I talked about how living with diabetes for a quarter century doesn't make me an expert at living with it - that no amount of time can guarantee that knowledge. I talked about the costs of time and emotion that diabetes charges me. I talked about how today's technology is great, but it's not good enough. I talked about how an artificial pancreas could change my life - and wondered (out loud) what the heck I'd do with my free time, if I wasn't worrying about diabetes so much. (Pretty sure I actually used the term "diabetes brain" in one meeting - I hope they knew what I meant.) And I acknowledged that while a device automatically deciding on and controlling insulin delivery could be dangerous, living with diabetes is dangerous. And we can't afford to keep waiting.
That's what being an advocate is: speaking up when it's needed, not just when it's convenient. Having the audacity to put our voices out into the world, and to tell our own stories.
It's what we do here in the diabetes online community, and I hope it can also be what we bring out into the off-line world. Interested in signing up as a JDRF advocate? You can find more information here.
Disclosure: As always, these opinions are my own. JDRF has not asked me to blog about the Government Day event, nor have they asked me to promote their advocacy program. (Though I do volunteer on my local chapter's GR committee - so it's this thing I'm trying out.) As someone who was so proud to represent our community and cause during those four days (and always!), I'd be remiss not to recount what I learned, and how I interpreted the event.
Wednesday, March 9, 2011
Outsmarting Smart Insulin?
I tuned into yesterday's JDRF Advocacy webcast with Dr. Aaron Kowalski to find out some more about what's going on with the Artificial Pancreas Project. (If you didn't have a chance to tune in, the recorded version can be found here.)
I'm a fan of Dr. Kowalski. He's a smart and engaging presenter with the perfect storm of expertise and experience - because he is a scientist AND a person living with type 1. (He also appears to be an avid Diet Coke drinker - bonus points.) Who better to have on our side?
Listening to, as well as participating in, these webcasts helps me as someone without an extensive science background understand my own disease a bit better (and reassures me that I'm pronouncing words like "interstitial" correctly). It also gives me (what feels like) an insider's look at what JDRF is working on, and what they need volunteers (like myself) to do to help. These webcasts help put a face and voice to a huge organization. It endears them to me, frankly. Seeing that kind of transparency and accessibility is refreshing.
Though much of what was discussed were topics I'm already fairly familiar with - clinical trials for the AP, smart insulin, etc. - it did get me thinking about a few things. And so, as I'm want to do, here's my (short) feedback about what was discussed.
***Disclosure: As in the past, JDRF has not asked me to blog about their webcasts. They did ask for any follow-up questions and thoughts viewers might have had via Twitter, but I didn't think I could fit all of this into 140 characters. :)
| Not drawn to scale. Also, not drawn by me. |
Listening to, as well as participating in, these webcasts helps me as someone without an extensive science background understand my own disease a bit better (and reassures me that I'm pronouncing words like "interstitial" correctly). It also gives me (what feels like) an insider's look at what JDRF is working on, and what they need volunteers (like myself) to do to help. These webcasts help put a face and voice to a huge organization. It endears them to me, frankly. Seeing that kind of transparency and accessibility is refreshing.
Though much of what was discussed were topics I'm already fairly familiar with - clinical trials for the AP, smart insulin, etc. - it did get me thinking about a few things. And so, as I'm want to do, here's my (short) feedback about what was discussed.
- The idea of an AP that incorporates a CGM, insulin pump, and glucagon pump seems to make the most sense to me. However, that brings up some real-world concerns in my mind, like "Aren't I going to run out of skin real estate with that many sites to rotate around?" And if I'm worried about that problem as a fully-grown adult, it is sure to be even more of an issue for small children.
- As someone who tends to see their BG plummet during certain types of exercise, the idea of "smart insulin" concerns me. If you're not familiar with the concept of what "smart insulin" is, take a look here. Essentially, it's an insulin that could both detect and respond to elevated glucose levels. So here's my concern: there are times when I want my blood sugar to be elevated. Like before I walk that marathon in May. Exercise + Insulin On Board usually = Big Trouble. Which would mean that Exercise + Insulin That Dispenses Itself Without Knowledge That I Don't Need It = Yikers. I'd need a way to outsmart the "smart" insulin.
- Dr. Kowalski touched on that concern that many of us have - that CGMs can sometimes be inconsistent and inaccurate, and it's hard to trust that having one hooked up to an insulin pump would be a good thing. He made a great point that I hadn't really thought of before: because these monitors do not test blood, they can't be expected to exactly match blood testing results. Just think - what if, instead of blood glucose monitors, we had been using interstitial fluid glucose monitors this whole time, and then they came up with Continuous BLOOD Glucose monitors? Then we'd think that blood testing was "way off". It's not realistic to think of the two technologies in apple-to-apple terms. When I see the Dexcom being accurate most of the time, I start to think that it should be that way all of the time - when, really, it's supposed to be there just for trending information. I keep forgetting that.
***Disclosure: As in the past, JDRF has not asked me to blog about their webcasts. They did ask for any follow-up questions and thoughts viewers might have had via Twitter, but I didn't think I could fit all of this into 140 characters. :)
Monday, November 15, 2010
Type 1 Talk - A Review.
This past Sunday marked the first Type 1 Talk, a JDRF-initiated effort to organize local type 1 diabetes communities. Anyone who wanted to participate tuned into an hour-long Ustream broadcast and listened to a panel of experts discuss the topics we voted on weeks prior.
I had a handful of people at the event I hosted, and enjoyed getting to have face-to-face conversations about things like the artificial pancreas, beta cell regeneration, and my Dexcom CGM. We heard the panel discuss topics like getting the artificial pancreas approved by the FDA for use in the U.S., how to increase public awareness of type 1 diabetes and how to educate others about it, and healthcare coverage for type 1 adults.
I thought the topics were handled well, but I wished we had more time. It's certainly difficult to try to fit five topics of that magnitude and importance into an hour, but to then try to have time for real-time questions - it just didn't happen. There is talk of holding events like these on a semi-regular basis in the future, and I'll be glad to participate if this idea comes to fruition*.
With that said, I thought the variety of panelists was just what it should be. Each presenter brought something important to the conversation; we had people from the science and research end of things, the public relations side, and the online community side. We had both type 1's and type 3's**. We also were fortunate to have some of the brightest minds out there in the diabetes community, and it was fun to watch them interact all in one room.
Nice work, JDRF.
* I'd like to make a disclosure here. While I have ties to JDRF in different capacities as a volunteer, my choice to mention them here, and to ask others to help in their efforts is just that - my own choice. They have never asked me to mention them; I do so because I like the organization, and feel that they have the loudest voice when it comes to diabetes advocacy at this time.
** A "type 3" is defined as someone who cares about and/or for someone with diabetes. This could include parents of a child with type 1, a spouse, a brother/sister, a friend, etc.
I had a handful of people at the event I hosted, and enjoyed getting to have face-to-face conversations about things like the artificial pancreas, beta cell regeneration, and my Dexcom CGM. We heard the panel discuss topics like getting the artificial pancreas approved by the FDA for use in the U.S., how to increase public awareness of type 1 diabetes and how to educate others about it, and healthcare coverage for type 1 adults.
I thought the topics were handled well, but I wished we had more time. It's certainly difficult to try to fit five topics of that magnitude and importance into an hour, but to then try to have time for real-time questions - it just didn't happen. There is talk of holding events like these on a semi-regular basis in the future, and I'll be glad to participate if this idea comes to fruition*.
With that said, I thought the variety of panelists was just what it should be. Each presenter brought something important to the conversation; we had people from the science and research end of things, the public relations side, and the online community side. We had both type 1's and type 3's**. We also were fortunate to have some of the brightest minds out there in the diabetes community, and it was fun to watch them interact all in one room.
Nice work, JDRF.
* I'd like to make a disclosure here. While I have ties to JDRF in different capacities as a volunteer, my choice to mention them here, and to ask others to help in their efforts is just that - my own choice. They have never asked me to mention them; I do so because I like the organization, and feel that they have the loudest voice when it comes to diabetes advocacy at this time.
** A "type 3" is defined as someone who cares about and/or for someone with diabetes. This could include parents of a child with type 1, a spouse, a brother/sister, a friend, etc.
Friday, November 12, 2010
Guest Blog.
Today, I have the honor of being a guest blogger at Diabetes Social Media Advocacy. You can find my post for today (which continues my look at the Artificial Pancreas) here.
Thanks for having me, Cherise!
P.S. My friend Jeff (of International Diabetes T-Shirt Day fame) and I discussed this post ahead of time, and coordinated it so that he already has a response to my post on his website today, here. (My d-blogging as of late is starting to resemble the movie Memento, isn't it?) Go read and enjoy!
Thanks for having me, Cherise!
P.S. My friend Jeff (of International Diabetes T-Shirt Day fame) and I discussed this post ahead of time, and coordinated it so that he already has a response to my post on his website today, here. (My d-blogging as of late is starting to resemble the movie Memento, isn't it?) Go read and enjoy!
Thursday, November 11, 2010
My Fascination With The Artificial Pancreas: Episode 3.
Yesterday, the FDA and NIH held a public meeting on the Artificial Pancreas (AP) technologies; specifically, to discuss the next step - which is to take clinical studies from in-hospital to out-patient. The day-long meeting was shared through an online webcast, and I listened to nearly all of it while at work yesterday, hoping to absorb as much as I could.
I felt like I learned so much - as I did the last time I tuned into a webcast on AP technology - but I'm not sure how to properly convey it all here. I tried to explain everything I learned to A when I got home; and, as he is prone to do, kindly listened to my Excited Fast Talking for as long as needed.
I'll pre-emptively apologize for the likely scatterbrained organization of this post. I honestly have more information than I know how to handle, so I'm just doing a short post of the main points that stuck with me. I need to let the rest simmer a bit on the back burner of my mind stove. Also, I'll be exploring more of my AP concerns in my post appearing tomorrow... somewhere else!
There are just so, so many intricacies to getting an AP in the hands of those who need it here in the US - just in the technology development itself, not even counting the FDA approval process. I knew it was a complicated technology unlike any that's been developed before (the technology required for the AP was often compared to flight engineering - but even then, that doesn't cover it all), but I underestimated how many hundreds of small decisions have to go into getting it "finished". And while I still find the wait irritating, I'm starting to understand the need for it a bit more.
For example, it sounds like the first version of the AP that might get approved would be a system with only the ability to shut off insulin delivery, for probably a two-hour period, to mitigate hypoglycemic events. It sounds a lot like what we insulin pump users already do with temp basals, right? Except, it's not that easy. At what point will this feature kick in - and do you really trust the CGM's accuracy in acknowledging these events? Do you wait for the reading to cross a certain BG threshold for this feature to engage (which is a reactive approach), or do you find a way for it to respond to a specified downward trend (which is proactive)?
This version of the AP is missing a key component though - it doesn't do anything to correct high BG levels. And when you suddenly give the AP the ability to increase insulin dosing, instead of merely being able to reduce it, you're entering a whole new world of risk.
One issue that got a good deal of air time was the matter of who the AP trial clinicians should be looking for to participate in this round of study. Who could "benefit most" from the technology? (I'd argue "all of us", but I guess that's why I wasn't on the panel.) You could argue for those with hypoglycemic unawareness. Or for those who experience a significant number of "severe hypoglycemia excursions" each year (Their words, not mine - although I kind of love this phrase. It makes me think of giraffes, and safari hats.) Many suggested a group who was already "well controlled", with an A1C under a certain number, and who was already familiar with CGM and insulin pump technology.
Which leads me to my last point - one of the panelists expressed concern over the amount of education that would need to be provided for these out-patient clinical trial participants. They were mostly concerned that the problem would lie with the amount of knowledge and skill in using the technology away from a hospital environment.
I think they're missing a big point.
The use of an artificial pancreas as a treatment option presents a huge paradigm shift for people with diabetes. We're used to the ones being in charge of our own care; of making educated guesses based on our personal experiences with our disease. It's hard to imagine a place in time where someone who is used to that amount of mental involvement could suddenly put complete trust in a mostly-autonomous diabetes management system. I think the acceptance rate for the AP is going to be a big obstacle to overcome. Which means that a question the researchers should be looking to answer is this: How do we get people to trust this thing?
**The title of "Episode 3" might be a little bit misleading. I wrote a post about the AP back in August (hence, episode 1), and I've written another (episode 2) which hasn't been published yet. It will show up Friday. :)
I felt like I learned so much - as I did the last time I tuned into a webcast on AP technology - but I'm not sure how to properly convey it all here. I tried to explain everything I learned to A when I got home; and, as he is prone to do, kindly listened to my Excited Fast Talking for as long as needed.
| My mind stove. |
I'll pre-emptively apologize for the likely scatterbrained organization of this post. I honestly have more information than I know how to handle, so I'm just doing a short post of the main points that stuck with me. I need to let the rest simmer a bit on the back burner of my mind stove. Also, I'll be exploring more of my AP concerns in my post appearing tomorrow... somewhere else!
There are just so, so many intricacies to getting an AP in the hands of those who need it here in the US - just in the technology development itself, not even counting the FDA approval process. I knew it was a complicated technology unlike any that's been developed before (the technology required for the AP was often compared to flight engineering - but even then, that doesn't cover it all), but I underestimated how many hundreds of small decisions have to go into getting it "finished". And while I still find the wait irritating, I'm starting to understand the need for it a bit more.
For example, it sounds like the first version of the AP that might get approved would be a system with only the ability to shut off insulin delivery, for probably a two-hour period, to mitigate hypoglycemic events. It sounds a lot like what we insulin pump users already do with temp basals, right? Except, it's not that easy. At what point will this feature kick in - and do you really trust the CGM's accuracy in acknowledging these events? Do you wait for the reading to cross a certain BG threshold for this feature to engage (which is a reactive approach), or do you find a way for it to respond to a specified downward trend (which is proactive)?
This version of the AP is missing a key component though - it doesn't do anything to correct high BG levels. And when you suddenly give the AP the ability to increase insulin dosing, instead of merely being able to reduce it, you're entering a whole new world of risk.
One issue that got a good deal of air time was the matter of who the AP trial clinicians should be looking for to participate in this round of study. Who could "benefit most" from the technology? (I'd argue "all of us", but I guess that's why I wasn't on the panel.) You could argue for those with hypoglycemic unawareness. Or for those who experience a significant number of "severe hypoglycemia excursions" each year (Their words, not mine - although I kind of love this phrase. It makes me think of giraffes, and safari hats.) Many suggested a group who was already "well controlled", with an A1C under a certain number, and who was already familiar with CGM and insulin pump technology.
Which leads me to my last point - one of the panelists expressed concern over the amount of education that would need to be provided for these out-patient clinical trial participants. They were mostly concerned that the problem would lie with the amount of knowledge and skill in using the technology away from a hospital environment.
I think they're missing a big point.
The use of an artificial pancreas as a treatment option presents a huge paradigm shift for people with diabetes. We're used to the ones being in charge of our own care; of making educated guesses based on our personal experiences with our disease. It's hard to imagine a place in time where someone who is used to that amount of mental involvement could suddenly put complete trust in a mostly-autonomous diabetes management system. I think the acceptance rate for the AP is going to be a big obstacle to overcome. Which means that a question the researchers should be looking to answer is this: How do we get people to trust this thing?
**The title of "Episode 3" might be a little bit misleading. I wrote a post about the AP back in August (hence, episode 1), and I've written another (episode 2) which hasn't been published yet. It will show up Friday. :)
Thursday, August 26, 2010
(Almost) An Hour With JDRF's Dr. Aaron Kowalski.
Tonight, JDRF's Dr. Aaron Kowalski (who is the head scientist overseeing the Artificial Pancreas project, among other responsibilities with JDRF) did an hour-long webcast to answer live questions about the AP. I say "almost" an hour, because I forgot it was tonight and didn't get to tune in until about the 15-minute mark.
In true nerd form, I took three pages of very scribbly notes. I tried to submit questions, but the log-in wasn't working for me. I learned so much in this 45 minutes, and I wanted to share some of it with you all, in case you missed it. Dr. K, as I will now refer to him, mentioned that the webcast should be up for viewing on the JDRF website soon, so I'll include a link to that when it becomes available. (***EDIT - Here's the link! ***) He came across as a totally nice, down-to-earth, and wicked smart dude. I'm glad we have people like him on our "team".
Things I Learned:
In true nerd form, I took three pages of very scribbly notes. I tried to submit questions, but the log-in wasn't working for me. I learned so much in this 45 minutes, and I wanted to share some of it with you all, in case you missed it. Dr. K, as I will now refer to him, mentioned that the webcast should be up for viewing on the JDRF website soon, so I'll include a link to that when it becomes available. (***EDIT - Here's the link! ***) He came across as a totally nice, down-to-earth, and wicked smart dude. I'm glad we have people like him on our "team".
Things I Learned:
- Dr. K has type 1, just like we do, and has had it probably about as long as I have. (He also mentioned that his brother has type 1 as well, and has had it for about 30 years.) So, this cause is very near to his heart. And pancreas.
- Dr. K might be Clark Kent. He kept doing that push-your-glasses-up-with-one-finger thing, and it cracked me up. Okay, fine, down to the serious stuff.
- Someone asked what the blood glucose range might be for the AP. He suggested that it would probably be between 70 and 180 or 200. (Hey, that's what my CGM range is! I guess I'm 'practicing'.)
- This part - I had no idea this happened, and I found it kind of fascinating. Remember the story of Pavlov's dog and classical conditioning? Ring the bell, and it would start salivating? Turns out a non-diabetic's pancreas does that, too. When people get hungry and even LOOK at food, he said the pancreas starts to secrete insulin into the blood stream. I never knew this! It helps explain why timing your bolus 15 or so minutes before eating makes sense - your body is used to insulin being introduced to the blood stream ahead of food being eaten. This also is a reason why we need faster-acting insulins, which Dr. K said will be needed for the AP.
- Someone asked what a realistic timeframe is for the AP being introduced to the general public. The AP project is a four-year project, and right now we're only 8 months in. All of the puzzle pieces exist (pump, CGM, algorithm); the challenge of course is getting those parts to work together in a safe way. The process of FDA approval in the U.S. is a long one - safety is a HUGE concern - so a lot of the timing rides on that. His best guess was 3 - 4 years.
- Will the AP be appropriate for use by type 2's as well? Absolutely - but he said the challenge will be getting those people to accept wearing it. The "acceptance rate", or however he put it, for insulin-dependent type 2's compared to type 1's is very small. I can't blame them - I don't particularly enjoy being half-robot either. Dr. K mentioned that it maybe would even be "easier" for their bodies to accept the technology, as type 2's have better glucagon response than their type 1 counterparts. The Kool-Aid Man would be proud.
- I'm not the only one who has to bolus right when they wake up, to combat the dawn phenomenon. Dr. K mentioned that he typically, when seeing even a "normal" blood sugar at his first blood test of the morning, will take roughly 1/3 of his breakfast bolus then. I take about 2 units when I wake up, providing I am not low, or needing a correction. High five, Dr. K!
- One of the dangers of the AP that they're working on figuring out is balancing risk vs. benefit, and making sure to avoid overdosing insulin. (He mentioned an interesting statistic from research they'd done: Of people who have an A1C over 7.0, most typically spend about one hour a day below 70 mg/dL. Of people who have an A1C of under 7.0, most typically spend about 90 minutes a day below 70 mg/dL. Again - turns out I'm not alone.) The problem here is risk vs. benefit. Yes, reduced average blood sugars lead to significantly fewer incidences of complications - but those lows have a short-term risk of death, while the risk associated with highs is generally long-term. This plays into why it will take a while for FDA approval - mitigating the risk of hypoglycemia while wearing the AP is crucial.
- I already knew some of this, but it has been shown that diabetics still produce beta cells - the problem is that the immune system keeps killing them off. That first part is great news, and helps explain why some of us find our diabetes easier to manage than others, and why some periods of time seem easier to manage than others. Apparently, there are times where your pancreas produces those beta cells faster than the immune system can kill them off. So, those days where I've joked that I'm "not diabetic anymore" because I had stellar numbers? Turns out I wasn't kidding!
- The question came up, "What are the expectations of success with the AP for long-term diabetics, vs. the newly-diagnosed?" I made sure to listen very closely to this one, as parts of me wonder that since I've had this for so long, it might be that I'm just unfixable. Dr. K said that the research is showing that the AP works "extremely well" for the newly-diagnosed, and the outlook is "good" for us veterans. He mentioned the Joslin 50-year Medalist Study group and how well some of those people have responded to it. This gives me hope, and that's one of the best motivators out there.
- Combining pump and CGM sites into one, instead of having to wear two seperate sites/sensors? "Everyone's driving this."
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