22 July, 2014

How many pieces of technology does it take to replace a pancreas?

In this case,
  • an iphone
  • a tablet
  • two continuous glucose monitors
  • one insulin pump
  • one wireless hotspot
  • a pump meter/remote

A couple weeks ago I got a call about participating in an Artificial Pancreas System trial at UVA, and being that the dates fit perfectly into my summer schedule and I've been wanting to participate in one since I first heard about the system, I of course signed right up.  After the checks to make sure I was alive and not pregnant, I was screened in to the trial.  This meant a week of data collection at home, and then two stays at UVA each lasting about 30 hours.

For 30 hours I got to watch as the devices I listed above worked collectively  as my pancreas.  I watched (somewhat in disbelief) as the system time after time corrected predicted highs and lows to keep me within range for the entire time I was there.  Through meals, sleep, and exercise, I maintained normal blood glucose levels.  While I get some good days here and there when that happens, it is usually because of very careful calculations on my part, or just plain luck.  At one point one of the nurses said "Who would have thought math could do something this great?"  In my head, I responded, "Me Lady!  Of course math can do this - math can do anything you ask it to do!" But I understood her point - after five years of treating my body like a science experiment, I was hooked up to a system that was making all the decisions for me - and making all the right ones.

While at UVA, I had zero high blood glucose values, and zero lows.  The following day at home, I experienced one high, and five lows (three of which were overnight).  Getting to see the system in action gave me hope - I can say with certainty that this will become a reality for home use in my lifetime and will make diabetes management so much more effective and less of a mental and emotional burden.  That is also what made it difficult to go back to "just" my cgm and pump.  It is hard knowing there is a system out there that is safer and more effective than the guessing game I do all day everyday, but also knowing I have to wait, and wait, and wait for it to become available.  If you know me, you know waiting isn't really my thing.

In addition to my rejuvenated hope and faith that this will get easier in my lifetime, I also walked away with a few pieces of information that I think will improve my current methods.

  1. My body seems to do well with an 80% bolus upfront for meals, with the other 20% given over a half hour, one hour, or two hours (depending on the fat content).  
  2. It had been way too long since I strictly carb counted any meals, which meant that my estimates were getting further from the truth.  
  3. While I cannot make a decision about my insulin needs every five minutes all day and all night like the Artificial Pancreas can, I can test more often in the two hours after meals to see what adjustments I need to make in response to my mealtime guess.  

Sorry for the blur - but this is what an entire day of in range glucose values looks like :) 

I head back on Thursday for another 30 hours of closed loop diabetes vacation!  It is nice not having to devote any brain power to diabetes management, but I honestly didn't really know what to do with free time where I couldn't run, bike, or kayak.  

13 April, 2014

Thoughts on NYT article

           It has taken me awhile to decide how I want to respond to the article "Even Small Medical Advances Can Mean Big Jumps in Bills"  published by the New York Times about a week ago.  The article as a whole addresses some important issues relating to the high cost (in the U.S.) of chronic medical conditions like type 1 diabetes. While the article addresses several underlying issues that contribute to the high costs (medical industry being business/profit oriented, high cost of research, pumps/meters having proprietary accessories, planned obsolescence), it still leaves the reader with an overall feeling that the patient is a contributing factor to driving up the costs - that patients are seeking out frivolous equipment that the entire country has to foot the bill for.
Here are a few items that I would have liked to see the article address that it did not.

1.  We are informed of what treatment options are likely best for us medically and based on our lifestyle.  From there, most of us make a choice based on what we think is likely to give us the best overall outcome with the fewest complications (that might lead to additional medical expenses, loss of work/income, eventual need for disability income).  Patients are usually not made aware of the total cost of a treatment up front.  They might be quoted an estimated amount that they will have to pay out of pocket, but likely won't see what was billed to insurance until receiving an Explanation of Benefits Statement after the treatment (or device) was already billed for.  This means that there isn't the same opportunity for comparison shopping that there is for other big purchases.  I don't chose to wear an insulin pump and cgm just because I can - or because my insurance covers it - I use them because they keep me alive - hardly frivolous.

2.  The "cost" of medical items is generally inflated with the understanding that insurance companies are only going to allow for a fraction of the billed amount.  This makes it impossible to determine what the true cost of a prescription drug or medial device is since the out of pocket cost is so significantly marked up (profit is clearly still gained from the much smaller amounts that insurance companies allow and cover).  This system seems to only the costs more difficult to cover for the uninsured, and also adds another layer of opaqueness to price transparency in the medical industry.  

3.  The article does not address at all the role that the FDA plays in complicating the medical device industry.  While planned obsolescence is a business practice that has been profitable for companies like Apple, and it may very well be a part of the business model for pump and meter manufacturers, the FDA also slows down the release of devices, to the point that by the time one model is finally released for sale in the U.S., the next model has already been developed.  In addition, there is no generic insulin because it is a biological drug, and until recently the FDA had not addressed regulation of biosimilar drugs.

And then there were a few items in the article that left me completely bothered.

1.  This quote: "People don’t need a meter that talks to them. There’s an incredible waste of money." DR. JOEL ZONSZEIN, director of the Clinical Diabetes Center at Montefiore Medical Center

Not everyone needs a wheel chair ramp, but we have them.  And guess what?  People who aren't in wheel chairs benefit from them.  Ever used one for a stroller or a bike?  That isn't why they are required to be there, but the ramps sure make it easier!  How exactly is someone who is blind or has low vision supposed to use a blood glucose meter effectively if it doesn't talk to them?  I'm not an expert (only someone who actually has the disease), but I'm pretty certain that vision complications can occur with diabetes.  Or, as the article stated, diabetics are living longer, and generally as people age, their vision declines.  Should people just stop testing once their vision goes?  This article shows a comparison of talking meters including cost https://nfb.org/images/nfb/publications/vod/vod_24_1/vodwin0910.htm So $16.79 is too high of a cost for it to be worth it for a diabetic with a vision problem to be able to monitor their blood sugar?  I can't imagine that it is more expensive than the cost of covering the complications and related expenses if the person's blood glucose levels are no longer well controlled due to not being able to monitor.

2.  And then this quote. "Most of the increase is attributable to Type 2 diabetes patients, whom manufacturers are encouraging to try insulin treatment and glucose monitoring, even though that is rarely medically required." 

Again, not claiming to be an expert here (I have t1, not t2, so what could I possibly know right?) but if by "glucose monitoring" they are referring to testing and monitoring blood glucose levels, this is absolutely medically necessary for people with t2.  Perhaps their doctor has not recommended that they test as often as I do (recommended by my doctor - not just for fun), but I am certain that testing is a part of their recommended treatment plan - whether it be multiple times a day, daily, or weekly.  If the author is actually meaning use of a continuous glucose monitor, then perhaps she should be more specific in her wording.  I was never contacted by a manufacturer prior to making my decision (along with my doctor) about use of a cgm.  Perhaps the mailing list and phone list for that sort of soliciting only has patients with type 2 diabetes, but despite all the junk mail and robo calls I get, none are trying to sell me additional diabetes bling to wear/use just for fun.  A cgm and insulin can't be obtained without a prescription, so perhaps if the manufacturers are influencing people to make decisions that are medially unnecessary, we need to address the doctors that are writing the prescriptions and what motivations they may have if they don't believe the meds/devices are needed.

My final bit of irritation came from a response to the DOC's reaction to the article.  I have no issues with points 1, 2, or 4.  But point 3 - the assumption that the strong opinions this article evoked were influenced by receiving mail from the JDRF I find ridiculous.  Despite having participated in events that benefit the JDRF, and being someone w/ t1d, I managed to not make it on to this mailing list either.  Unless of course this email was filtered to my junk mail, where it would have sat without me reading it anyway.  The idea that I could be swayed so easily be receiving an email telling me what to think about a particular article is frustrating.  Diabetes affects my pancreas, not my ability to read and develop an informed opinion on my own.