Monthly Archives: March 2013

#JDRFSummit 2013, Part One.

March 12, 2013 – 9:39 am

Saturday was a beautiful, sunny early March day. And I spent it inside, at the 2013 JDRF Type 1 Diabetes Research Summit. As I mentioned in last Friday’s post, it was a day filled with lots of discussion and presentations on Artificial Pancreas development, islet cell research, and more. Also, a few brushes with D-celebrities. Many thanks to the local JDRF people who made this event happen. I don’t know how you did it with so few volunteers, but it was great.

Diving right in…

We were welcomed by Tad Wood, Executive Director of Maryland’s JDRF chapter, and a wicked bike rider. Look for him at the ride for a cure in Vermont later this year. Our moderator throughout the day was Miss America 1999 and fellow T1D Nicole Johnson, who stressed how cool it was that there were so many families in attendance (there was a separate children’s program). She talked about our “AHA” moments, and I suppose there were more than a few for some at this event.

Bill Parsons, JDRF International board member and chief of staff to congressman Chris Van Hollen of Maryland, gave the JDRF “Less Until None” speech. The idea is to systematically remove the burden of diabetes until a cure can be found. That means making diabetes less of a burden for patients, less invasive, with less complexity. That would be nice.

Next up was the Artificial Pancreas team from the Center for Diabetes Technology at the University of Virginia. They covered a lot of the ground that I’ve already covered in this space (click here for more). What was really interesting to me were two things: One, I enjoyed looking around the room and watching the look on people’s faces when it clicked and they finally understood what all this Artificial Pancreas stuff meant. Two, the part about the remote monitoring that I wrote about in this post. When parents saw this, there was an immediate reaction. In short, parents want this like now. Later, at the question and answer session with the panelists, they were asked if they had contemplated releasing the remote monitoring prior to any AP approval. It wasn’t said, but I’m thinking this is not happening right now, even though it would be great. First, for it to work the way it’s designed right now, it requires an AP device, which hasn’t been approved yet. But, I’m wondering… could there be an app for that in the future? In other words, the CGM data uploads to an app on your mobile phone in real time, and the information is made available in a secure way through mobile technology. In theory, it sounds doable to me, but it would also require resources from the AP project to work on this piece alone. My guess is that JDRF is not funding something like that right now, but again, it would be great.

Also included was a talk from clinical nurse trial coordinator Molly McElwee, another Type 1 who spoke about her own experiences working on the project. She spoke about her worst day with diabetes (she described her talk as her own “Diabetes Naked”, in front of everyone). She took the low she experienced from that day, her pump and CGM data, and they put it through an AP algorithm at the center. In the algorithm, she would have received an alarm 37.2 minutes prior to hitting the 70 mg/dL mark, telling her she was trending down quickly. How cool is that?

Now, let’s get into islet cell talk. Chris Newgard, PhD, spoke with a great deal of passion about the research that’s being done to both discover why islet cells die in people with Type 1 Diabetes, and why it’s been so difficult to figure out how to successfully implant islet cells and make them expand. He feels they’re getting closer, and there are a few possible ideas being investigated. Including something that looks a lot to me like the BioHub thing that everyone was complaining about last week. I have my doubts, frankly… but even if islet cell transplantation or expansion of functional cells doesn’t happen, they’re still learning an awful lot about this important aspect of Type 1 Diabetes.

All right… I can see that this is getting long already. So there will have to be a part 2, hopefully tomorrow. So much to share with you.
 
 
 

By StephenS | Posted in Diabetes | Tagged , , , | Comments (3)

Sometimes the highs are worth it.

March 11, 2013 – 10:39 am

I have a lot to talk about this week. But first, I need to get this thing out of my head from yesterday. It’s about a low. One of those nasty, thrashing around, call 911 hypoglycemic events that we all hate to think about. Or talk about. I’m fine, no real harm done, and the EMS people were only at the house for about five minutes because I’m always better by the time they get there anyway, though the thing I hate most about those times (which have been very infrequent) is that they have to be there at all instead of being out helping someone who really needs to be helped.

The thing about the situation yesterday is that it could have been avoided. There are two ways that I could have avoided such a low. And I have a real point to make at the end, I mean it.

The first: I should lay the groundwork here by saying it was around five o’clock, it was already a full day, with a warm afternoon which included my first outdoor bike ride of the year and catching up on cleaning the kitchen within an inch of its life, cleaning the bathroom within an inch of its life, and doing the laundry. I had just come up from the basement after switching over the laundry for the third time, and Maureen said “Whoa, slow down, come sit down, you look pale”. I could feel myself getting low downstairs, and I took an extra couple of minutes (7? 8? 10? Who knows?) to finish everything down there before going back upstairs. You can see where this is going, yes? So I knew I was low when I came up. But I sat down anyway without getting anything or even grabbing my meter. Maureen is like, “You look low… I’m getting some juice and something to eat”. I told her not to, I have a tube of Glucolift tabs in my pocket, and if she could, please get my meter. I didn’t want to overtreat and kill my appetite for what was shaping up to be a nice Sunday dinner. I wanted to know where my BG was so I could ingest an appropriate amount to get back up to an appropriate range.

So in about two seconds (she’s superhero fast like that) she brings me juice, honey, and my meter. “Here, drink this before you test”. “No, I want to test first”. “No, drink this first”. I had to move her hand away from trying to hand me juice while I tried to get a drop of blood to my test strip. And now, with my brain turning to mush, each attempt by her, each word by her, meant that I had to start at zero again and concentrate from the beginning to inch my way toward that strip. And in the end, that drop of blood never made it there, and the meter, myself, and Maureen all made it onto the floor.

If I would have been left alone for just a few seconds, I probably (probably…) would have gotten that reading and then started treating right away.

The second reason: Of course, the worst could have been avoided if I would have just obeyed orders and immediately started drinking juice and eating honey. And popping Glucolifts like they were candy (they do taste like candy, I confess). But I didn’t. And that’s what brings me to the crux of this post.

Here’s what I learned from this experience: Sure, if I would have been on my own, I probably would have tested first, and I’m pretty sure everything would have been okay and there would have been no need for EMS intervention or anything like that.

But the thing is, I wasn’t by myself. There were two people in this scenario, and other than physically, the other person was affected just as much or more than I was by the whole episode. People With Diabetes: Do you think that the other people in your life aren’t affected at all by what you go through? Do you think that they don’t feel for you at these moments? Do you understand that they feel responsible, sometimes guilty for not helping you enough? If I can help it, I do not want to be responsible for heaping more on my loved ones than they already have to endure.

What I learned from this is that sometimes, it’s just better to risk overtreating and suffer the high BG later in order to save your loved ones the unbearable and unnecessary grief, guilt, and fear of the next time. Holy crap, I would give anything to erase that now. Including a little bump in my A1c or a CGM graph or a downward-carb modified dinner.
 
 
 

By StephenS | Posted in Lows | Tagged , , , , | Comments (7)

Things to consider this weekend.

March 8, 2013 – 11:09 am

Just finished up a great visit with my endocrinologist this morning. More about that next week. In the meantime, in case you didn’t hear about these, here are a few things for you to mull over this weekend:

I’m headed to Bethesda, Maryland (okay, North Bethesda, Maryland) on Saturday for the 2013 JDRF Type 1 Diabetes Summit. Lots of Artificial Pancreas and Islet Cell talk, and a chance to commune with other Type 1ers. I’ll try to write about what I find out next week. If you see me there, I hope you’ll stop me and say hello. It would be my pleasure to meet you. More information about the summit is available at http://www.jdrfsummit.org.
 
 
The Medicine X Conference is scheduled to take place on the campus of Stanford University September 27, 28, and 29. Courtesy of Christopher Snider, notice that MedX is taking submissions for ePatient scholarships to attend the conference. Find out about it at http://medicinex.stanford.edu/medicine-x-alliance-health-epatient-scholarship-program-2013/.

Man, that’s a long web address.
 
 
Finally, I found this little tidbit in my inbox from the U.S. Food and Drug Administration:

FDA wants you to be a part of a new working group “that is geographically diverse and consists of experts and interested persons from all stakeholders in the HIT (Health Information Technology) community to help develop the required strategy and recommendations.”

If you would like to nominate someone or even yourself to serve on this new working group, please visit http://onc-faca.altaruminstitute.net/apply and complete the application by March 8th, 2013.

That’s today, folks. Hurry. And enjoy your weekend!
 
 
 

By StephenS | Posted in Diabetes | Tagged , , , | Comments (1)

Eyes On The Prize, People.

March 7, 2013 – 10:00 am

As you’ve no doubt read already, some feelings were hurt this week when the Diabetes Research Institute did a press release touting their new idea, the BioHub. It included a carefully edited 5 ½ minute video (that I’m purposely not sharing here), that finished by trying to give us the feeling that the only thing holding back their idea from becoming reality was the amount of money, or lack of it, that we could raise for DRI. Making the problem worse for some was a pre-release blog post from Diabetes Dad Tom Karlya, who stated in his title “This Could Be It… What We Have Been Waiting For Since Diagnosis!!!!”. Tom has since posted not one, but two mea culpas on his site post-release.

As I’ve alluded to above, there has been much wringing of hands over this thing, outrage at times, and honestly, if I weren’t so busy, I would include all of the links to those posts here. But if I may, let me just say two things about this ordeal, and then it will be finished for me, other than being a reminder of the power of the internet pen and a reminder once again to carefully choose my words.

First, let’s remember: We’re not any worse off than we were a week ago. My life goes on. I still have diabetes, yet I still look with a hopeful eye toward the future. Not so much for me, but for others who are younger than me. If I can do anything to help eradicate this disease from our planet, or make lives better while living with diabetes, I’m all for it. That hasn’t changed, and it won’t change, regardless of whether a momentary research and marketing (or is it marketing and research?) buildup succeeds or fails.

Second: For me, this entire episode seems to show just how remarkable, and powerful, this Diabetes Online Community that we all talk about really is. Remember Kerri Sparling’s words from that Morning Edition piece on National Public Radio back in December? Quoting from the story:

Blogger Kerri Sparling isn’t worried. She says the diabetes online community can tell when something’s fishy. “If we see someone swooping in with their chocolate shake that cures Type 1 diabetes, there’s going to be a voice raised saying, ‘Wait, wait, wait, that’s not true! Or, ‘Don’t come in and spam our community.’ We protect ourselves in that way,” she says.

Isn’t that what’s happened here? Sure… someone with a personal and a monetary interest in seeing DRI succeed got out ahead of a story and in some places, was vilified for it. This may not be true at all, but I suspect both the blog post and the press release on the BioHub were part of the same marketing package. I’m sure that as a result of what we’ve seen this week, both Tom and DRI will be very careful about how they pitch an idea in the future. That’s what is supposed to happen in a situation like this. On the other hand, if you read many of the comments on his own blog, you’ll see that there are many who support Tom and didn’t think they were mislead at all.

This is all good. We need diversity of thought to keep this thing strong. Whether it’s discord or disappointment, when these things happen we need to talk them out. Think them through. Not everyone will agree on every point. But the discussion will eventually bring us to a point where we’ll all be able to move forward.

Oh, and one other thing, and I’m not taking sides here: Don’t forget that ultimately, Tom Karlya’s goal is the same goal we all have. I still have my eyes on the prize. I’m ready to move on. You?
 
 
 

By StephenS | Posted in Social Media | Tagged , , , | Comments (2)

Can we make it about care again?

March 6, 2013 – 9:07 am

I thought about writing about the Diabetes Research Institute’s recent BioHub announcement, but there are already several excellent posts written on the subject. Instead, I’m going to put this piece up for you to consider. Sorry if it seems like I ramble a bit here… this is a multi-faceted subject, and it’s hard to concentrate on one part of it while ignoring everything else. At any rate, I hope this gives you something to think about, and I hope it gives you a little bit of a break from all of the DRI posts this week.

Over the weekend, I heard a rebroadcast of an interesting topic on Diane Rehm’s excellent radio show. It was about healthcare in the USA since the Affordable Care Act has been passed, what we can expect once a large slice of the law takes effect in 2014, and how the law itself doesn’t address the high cost of healthcare in my country, and why. Her guest was Steven Brill, who wrote a cover story for Time magazine on the subject. It’s a really good show and a great story, if you want to check it out:

Show: http://thedianerehmshow.org/shows/2013-03-03/us-health-care-costs-rebroadcast

Story: http://healthland.time.com/2013/02/20/bitter-pill-why-medical-bills-are-killing-us/

One of the points made by Mr. Brill on the show is that he believes that Medicare works pretty good for seniors (compared to the plans most of the rest of us deal with anyway), and most of all, it holds down costs. As a result, he thinks we might be better off if we just allowed everyone the opportunity to enroll in Medicare. I don’t know if this is a great idea or not, but it got me thinking.

Why do I care about this? To begin with, Medicare is where I’m headed in another 15 or 20 years. Also, it’s where you’re headed in the future, if you’re not there already.

So I thought I would look into it. I can’t say much with regard to whether Medicare’s costs are low or astronomical, but there is evidence that the rate of increase in costs for Medicare is nothing compared to the 97 percent increase in insurance premiums Americans have seen since 2002.

When it comes to what Medicare covers, and what it doesn’t cover, there’s a little more documentation. But surprisingly (my skepticism of government-run programs is legendary), there’s a fair amount in there for Seniors With Diabetes (SWD).

For instance… when you’re newly diagnosed, Medicare approves 10 hours of Diabetes self-management training in the first 12 months. Also, you get this training if you’ve already been diagnosed, but you’re going from oral medication to insulin therapy for the first time. I got about an hour’s worth of training back in 1991. What’s covered in the training? The basics about managing your BGs, your diet, and exercise. Also, these interesting bullet points: How to adjust emotionally to having diabetes, and the use of the healthcare system and community resources. By the time I’m eligible for Medicare, I hope this includes finding online support. In addition to the initial training, Medicare recipients are eligible to receive 2 hours of training per year after the initial training. Not sure what’s covered in that.

Now, let’s talk durable medical. On the one hand, Medicare will cover an insulin pump for you and cover 80 percent of the cost if your doctor prescribes it. On the other hand, if you’re on insulin therapy, Medicare will pay for up to 300 test strips every three months. That only allows you to test about 3 times per day. It’s even worse with non-insulin taking SWDs. If you’re like a lot of Type 2s and not on insulin, Medicare will approve up to only 100 test strips every three months. But there is this little caveat, from the online guide Medicare’s Coverage of Diabetes Supplies and Services:

“If your doctor says it’s medically necessary, Medicare will allow you to get additional test strips and lancets. “Medically necessary” means that services or supplies are needed for the diagnosis or treatment of your medical condition and meet accepted standards of medical practice. You may need to keep a record that shows how often you’re actually testing yourself.” So there is that.

On the bright side, your insulin is covered under Medicare part D if you’re on MDI (multiple daily injections). Part D is the prescription drug part of Medicare. If you’re using an insulin pump: Your insulin is still covered, but under the durable medical portion of Medicare part B. In case you’re wondering, they’ve gotten Medicare down to 4 parts:

Part A – Hospital coverage
Part B – Medical coverage, including durable medical supplies
Part D – Prescription drug coverage

Part C – Also known as Medicare Advantage. Offered by Medicare-approved private insurance companies, Medicare Advantage Plans are a way to get the benefits and services covered under Part A and Part B. Most Medicare Advantage Plans cover Medicare prescription drug coverage too. So if you have Part C coverage, you won’t need Part A or B, and you might not need Part D either. Confused yet?

And this is where I have to jump off of the information train for now. The more I read about Medicare, the more I worry about senior citizens in this country (including my parents). Keeping costs down is great, getting coverage for everyone at a time in their lives when they may be the most vulnerable is great, but confusing them with a lot of rules and websites and documents and other things is most definitely not great. Can we make it about caring for our seniors again?

I’m going to be a senior citizen in a couple of decades. I hope by then, coverage will be more universal (there… I said it). I hope we’ll have better access to care and drugs and therapies that will help us live great lives into our golden years. And I hope care for everyone, senior or not, will be determined by need and not by politics or the size of your estate.
 
 
Here are some great resources I found on Medicare and Diabetes…

From Diabetes Monitor:
http://www.diabetesmonitor.com/medicare

From the Centers for Medicare and Medicaid Services, Medicare’s Coverage of Diabetes Supplies and Services:
http://www.medicare.gov/Pubs/pdf/11022.pdf
 
 
 

By StephenS | Posted in Diabetes | Tagged , , , , | Comments (1)