Monthly Archives: January 2015

Show the love, save a life.

January 30, 2015 – 1:12 pm

SAR2015
 
 
I’m headed out of the country for the next ten days, so depending on how my work and play schedule goes, you may or may not read more in this space over the next week and a half.

But before I depart, I want to remind you that it is always the season of…

Paying it forward.

Hope.

Life.

The Spare A Rose, Save A Child campaign begins February 1.

If you’re reading this, you’re probably one of the lucky people who have access to the life-giving insulin that keeps our blood glucose from skyrocketing, causing sickness and complications, and even death to People With Diabetes. You may pay a lot for it, but you have access to it. In fact, you may have a ready supply in your refrigerator at home right now. This morning, I counted 8 vials of this life-sustaining medicine in my fridge.

But you know, there are a lot of kids who do not have access to insulin, let alone a refrigerator, and for them, a diabetes diagnosis could be a death sentence. That’s where you and I come in.

Partnering for Diabetes Change and the International Diabetes Federation have teamed up once again to help raise money for the IDF’s Life for a Child program through Spare A Rose, Save A Child.

Really, what they’re doing is helping to save the lives of Children With Diabetes in 49 countries around the world who would be facing an extremely bleak future if you or I didn’t act, now. The idea is simple:

Have a special one in your life? Would you send roses to that person this Valentine’s Day? Going on the premise that one rose would cost about five dollars (US)… If, instead, you donated that five dollars, that cost of one rose, to the IDF’s Life for a Child program, you could help them purchase insulin for a child in a developing country for an entire month.

It’s that easy to see how your donation can make a difference. Five dollars saves the life of one child, for one month. But why stop there? By that math, the cost of one dozen roses could help a child live for an entire year! Last year, donations totaled enough to provide a year’s worth of insulin for 454 children while raising over $27,000. Can we do even better this year? With your help and my help, I think we can.

Click here or on the banner at the top of the page to be a lifesaver today.

This year, there’s even a way you can set up an automatic monthly donation via your bank card. Imagine looking at your bank statement each month and saying to yourself “Power bill, auto loan, Oh, look at that… there’s where I saved the life of a child (or two, or five, or ten) this month”. How freakin’ powerful is that?

And hey, can you do one more thing? Can you let the world know about it? I mean, why should you and I be the only ones out there saving lives? Let’s help others get in on the action too. Be sure to share the Spare A Rose campaign everywhere you have a social media footprint, and at work and school too. Share the giving link and the #SpareARose hashtag liberally. For more ideas on how you can help spread the message, go to SpareARose.org.

Five bucks, one child, one month of life. That’s a very measurable way to put a value to how you can make the difference– a life-sustaining difference– right now, today.
 
 
 

By StephenS | Posted in Advocacy | Tagged , , | Comments (4)

Because… Progress.

January 28, 2015 – 10:57 am

January is practically over, and you know what? It’s been a pretty good start to 2015.

Tandem has announced approval of their larger-capacity insulin pump.
The t:flex pump may not raise a lot of eyebrows, but it does provide something no pump has provided before: The ability to pack 480 units of insulin in the reservoir. I can’t name anyone off the top of my head who needs this right now, but I have been in support group discussions where People With Diabetes felt they couldn’t use an insulin pump because their daily insulin needs are higher, and they would have to change a set out too often, and it just wasn’t worth it to them to go through that. For many, this will solve that problem.

Not to be outdone, Medtronic obtained approval (outside of the USA) for their new 640g system.
This is the first system available to the public that will both suspend insulin delivery when a patient reaches a low point on their CGM, and resume insulin delivery when a patient’s CGM reading recovers. It also comes with additional hardware that looks to me like a PDM, and a seriously-needed upgrade to the CareLink software that, in images on Med-T’s website, look an awful lot like what you see with Dexcom’s downloads.

Speaking of Dexcom… The FDA announced approval of the Dexcom app software that allows CGM users to share their data with others in real time.
For people with hypo unawareness, sharing CGM readings with people close to you is life-changing, and potentially live-saving. Dexcom’s system will employ a new Dexcom Share receiver (the previous version was the Dexcom Cradle), and existing users will be able to upgrade at little or no cost. Of course, you and anyone you connect with (via the Dexcom Follow app) will have to have an iPhone or an iPad device to make this happen. But yay for the FDA allowing Dexcom to go through the de novo classification process, a regulatory pathway for low to moderate risk medical devices that are novel and not substantially equivalent to any legally marketed device, rather than making them go through the gauntlet of the full medical-device approval pathway.

I know, I know… all of these devices may have issues and fall short of what we are looking for from innovations in the diabetes device space. But who was talking about real-time CGM monitoring a year ago? Who was talking about pumps that suspended, then resumed insulin delivery based on CGM readings? Who was discussing larger pump capacities? Okay, well, people were talking about those things a year ago, but at least some of us didn’t expect any of these innovations to be rolled out to actual customers within a year’s time.

In the end, we can’t complain entirely that we don’t get everything we want right now, because… Progress. Things are moving forward, and I’m hoping that we’ll eventually reach a tipping point where the urge to both innovate and get those innovations to patients as soon as possible will cause device and drug makers to move at a pace that matches the rest of the world’s technological advancements.

Because… Necessary.
 
 
 

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

Altered diabetes states.

January 26, 2015 – 9:54 am

This is one of those #makessenseifyouhavediabetes stories, and it’s also a partial chronicle (not chronic) of a dream from over the weekend.

Somewhere in the night, I started dreaming that The Great Spousal Unit and I were in a department store, shopping for shoes. These were to be new shoes for me, and I’m pretty finicky about the shoes I buy. So I was taking too long, trying on shoes, putting them back, etc., and suddenly Maureen “remembered” something she needed to look for in another department. At this point, this is not too different from the norm.

But then, for some reason, I needed to find her again, so without putting my shoes back on, I started wandering through the store looking for my wife. And, like usual, I covered every department in the store, multiple floors, asking multiple people if they had seen her. They all said no, they hadn’t seen her.

But as I was walking away from one person I had asked, I heard her mention to someone that there was a customer walking through the store without shoes on. I was violating the “no shirt, no shoes, no service” rule. Now my paranoia was kicking in, and I was simultaneously looking for my wife and trying to dodge store security, who obviously wanted to cart me off to “mall prison”.

This continued on for some time, until I made it back into the shoe department, looking for the pair of shoes I walked in with. As dreams go, this was typical: I’m frantically searching for my shoes where I had left them, and I could see store security coming right after me.

Just before they closed in on me, I woke up suddenly. Being it was a weird dream, I took a moment to do a BG check: 52 mg/dL.

Must have been all that running around the store.
 
 
 

By StephenS | Posted in Uncategorized | Tagged , , | Comments (2)

Rage against the healthcare machine.

January 23, 2015 – 9:42 am

This may shock you, but I have a confession to make:

I went ten years without visiting a dentist.

Back in December I mentioned briefly that I had been dealing with a dental issue. Well, now it’s over, and I’m a lot poorer dollar-wise. The dentist (Maureen’s dentist) was thorough and did a great job.

Prior to that, I didn’t visit any dentist at all for a decade. Why?

Well, ten years is a long time. So the reasons varied from time to time. I originally stopped going after another botched procedure from a really awful dentist. It turns out that botched procedure was on the same tooth that needed to be worked on this time. I’m confident that this new fix is much better, and will be good for years to come.

And that was my first problem. I have been to many dentists over the years. My count is 11. Of those, only three (this latest one included) were worth a damn. The rest were incompetent, prone to creating great amounts of pain without believing they were doing so, or just crooks who wanted my money but didn’t do anything about my problems. Or some combination of the three. The first good dentist I had, I had to leave because I moved out of the city he is in. The second good one became too busy and pushed me off to the other dentist in his practice, who was the one who performed the bad procedure that caused my present-day issue.

After that last one (the eighth horrible dentist I’ve encountered), I vowed to never again see a dentist unless the need was urgent. Oh, I know that dental hygiene is important for everyone, including People With Diabetes. I’m a diligent brusher, and a maniacally-obsessed flosser and mouth-washer. But the way I looked at it, I was experiencing more problems, and throwing more good money after bad on dental work that either wasn’t helping me or needed to be reworked later, that I figured I would be better off on my own.

So, now that I’ve found another good dentist (only the third in my entire life) who does good work, will I visit more often? Probably not. Only this time, it has more to do with money than anything.

I make a decent middle-income salary. But the sad fact is, like so many other things in our lives these days, there is really only enough money in the budget to take care of one set of teeth in my house, and that’s Maureen’s. The vast majority of our healthcare spending goes toward taking care of my diabetes, and so, when things get to where we realize we can afford something else for one but not both of us, most of the time that money goes for Maureen. It’s disgusting that in our country, healthcare costs are so crazy that someone with an income like mine (who has insurance) still has to make decisions about what medical procedure to pay for, and what to leave out. Even for my teeth. But that’s the way it is. And I shudder to think what someone with less has to decide on.

I’m not proud of how I’ve managed my dental health over the decades. But this is my reality. And the reality is that while I used to rant against dentists, now I’m ranting about the cost of the entire healthcare system. Even if I find someone I trust, there is no conceivable way for me to pay to fix everything in my mouth while still paying for the rest of my and my spouse’s overall healthcare. For now, this is what I have to deal with. I finally have a dentist to go to for urgent care, but not for preventive care.

And yeah, I’m a little pissed off about it.
 
 
 

By StephenS | Posted in Out Of the Box | Comments (1)

Discussing the President’s Precision Medicine Initiative.

January 21, 2015 – 10:50 am

Well, he did it. The President of the United States mentioned diabetes in his State of the Union address on Tuesday night:

“I want the country that eliminated polio and mapped the human genome to lead a new era of medicine — one that delivers the right treatment at the right time. In some patients with cystic fibrosis, this approach has reversed a disease once thought unstoppable. Tonight, I’m launching a new Precision Medicine Initiative to bring us closer to curing diseases like cancer and diabetes — and to give all of us access to the personalized information we need to keep ourselves and our families healthier.”

I was very excited to hear this. And then, I almost immediately started researching “Precision Medicine Initiative” to see what the President was really talking about. Also, as a #WeAreNotWaiting fan, I was very interested in the last part of that statement, “to give all of us access to the personalized information we need to keep ourselves and our families healthier.”

To be honest, I haven’t found out much about that last part, except that it kind of ties in with the Precision Medicine Initiative idea. What that means is the President is beginning an initiative to further study genome mapping, not only of our personal DNA, but of diseases like cancer and diabetes. The hope is, of course, that if we know more about the genome sequencing of diseases in our bodies, we will be better equipped to treat them effectively. Or possibly cure them.

How successful will the President’s efforts be? That depends on how much funding the initiative gets from congress. And right now, congress is more interested in cutting taxes on people earning 2,000 times what I earn in a year than they are in funding research. Unless it might help someone or some corporation to earn 2,000 times what I earn in a year, all for helping me to continue managing my diabetes as they, not I, see fit.

I’m also concerned about what will happen if we actually find out something meaningful through this initiative. Will that information be widely shared, in the most transparent way possible, so anyone who wants to act on that information can do so, rather than restricting the benefits of the research to those most able to capitalize on the results? That’s a long question, and I fear the answer to it may be just as complex.

Skepticism aside, it was nice to see our President mention diabetes in the State of the Union address. As someone living with diabetes for the past (almost) 24 years, it was gratifying to see the urgency of curing diabetes on the same plane as cancer, which always seems to get more notice.

I really don’t know if the President’s Precision Medicine Initiative will yield any positive results, how long it will take, or if it will get off the ground at all. But I do know this: The more we know, the better equipped we will be to either act on what can be found from mapping the genomes of our disease states; or, the better equipped we’ll be to say it’s still a crapshoot and anything can still happen with my diabetes.

This is how things happen with State of the Union speeches. The President might have a laudable idea, and then congress may support it (or not), and eventually, it may produce meaningful returns. That may sound defeatist in a way, but we have to start somewhere. The President could have left this out of his speech entirely. By including it in his address to congress, he was saying this is an idea whose time has come, and why shouldn’t we learn more?

Why shouldn’t we indeed, Mr. President. Let’s get started.
 
 
 

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