Tag Archives: diabetes devices

The Dexcom G5 Mobile App. I’m a fan.

After last week’s whiny post about how I’ve been so disappointed in my diabetes devices lately, I feel compelled to let the pendulum swing in the other direction and give credit where credit is due.

About a week and a half ago, Dexcom rolled out its G5 Mobile app to Android users. Finally. Okay, I said I would give credit where credit is due. And kudos to Dexcom, who, as far as I can tell, is the only device maker to develop software to use on an Android platform. Yay!

I know all of you iPhone Dexcom users are yawning right now, but please give me a moment to be happy too. I’m a person who can appreciate the wonders of a good smart phone, but I can’t bring myself to pay hundreds of extra dollars because there’s an image of an apple on it. After years (literally, years) of waiting for an Android option, Dexcom has come through.

Among other things, this means no more carrying around the receiver. I’m a guy who carries too much in my pockets already. I do not need one more thing to lug around, and even though the receiver wasn’t too big, not having to carry it around feels like a big weight off of my… pockets.

In addition, I’ve finally completed my Clarity account setup, which means my endocrinologist can get my Dex data too. No more downloading the data at the office visit. She’ll have it already. Cool, huh?

I’m getting the hang of navigating the G5 Mobile app. It took me a couple of days to realize that I needed to turn the phone to landscape view to be able to see more than the last three hours’ worth of data. Once I do, it’s just a push of a button to view my data in 1 hour, 3 hour, 6 hour, 12 hour, or 24 hour increments. If I hover my finger at any point in the graph, it will show what my reading was at that very point.

And I have to admit to having a little fun with the alert sounds. Instead of the basic Vibrate, soft, attentive, etc. settings available on the receiver, I have 23 different sounds to choose from. So if I want to have my low alert set to Truck Siren or Blamo Dings, I can do that. Nice touch.

I get that making an app work on two different platforms is extra work, but I am SO HAPPY that Dexcom has made the effort. Reducing the burden of managing diabetes is a good thing, and to that extent, Dexcom has done it.

The Dexcom G5 Mobile app for Android users is available for free in the Google Play store right now.

My apologies for the off-center views of my phone screen. Security features built into the app will not allow for a screen capture, so I had to take photos of my phone screen.

Disclosure: I was not given anything or asked to write anything about the Dexcom G5 Mobile app. All opinions are, as always, my own.

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My Diabetes Platform for the election.

Welcome to Diabetes Awareness Month. And since this is also a big election year (and we generally elect candidates and vote on issues in November), let’s merge those two together for the sake of this post.

Oh yeah, I’m going there. For the sake of myself and my friends with diabetes, I’m going there.

I fully recognize that there is more than one way to get things done, and I’ve seen countless examples over the past eight years that there is more than one way to not get things done. Rather than going down party lines, I thought I would lay out my own framework for a more perfect diabetes union. My own policy statement that outlines issues I stand for during this very important election cycle. Here are my thoughts:
 
 
– Any talk of a rework or repeal of the Patient Protection and Affordable Care Act must include a guarantee of coverage for every Amercian, regardless of what they’re living with today and in the future. And an undertaking like this must not take place until all sides can agree that this provision stays in place. If you don’t support that, I won’t even think about voting for you, and should you get elected, I might even go to Washington to protest your stance. Loudly.
Note: they don’t want to “repeal and replace”… they want to take away your right to coverage, and deny it forever. If you’re okay with that, and you’re okay with any coverage you might be lucky enough to get costing more anyway (because they never said it would ever cost less), then go ahead and vote for your candidate(s).

– The Competitive Bidding program set up by the Center for Medicare and Medicaid Services (CMS) must end. As soon as possible. I have friends being harmed by this program today, I will have friends being harmed by this program in the near future, and if it continues, I’m a little over ten years from being harmed by this program myself. People who really know, know this program is wasteful. Make them stop it. Now.

– The cost of drugs and devices necessary to keep us alive is too much. Consider the fact that having to pay extra just for the right to stay alive is asking far too much. Having what is considered to be good coverage that costs me thousands of dollars out of pocket every year is a ridiculous way to say “good coverage”. The cost of staying alive should be significantly reduced. Make it happen. My friends and I will help show you how.

– Patients require a seat at the table. Notice I didn’t say “want”… I said require a seat at the table. When our well-being and overall health are being discussed by Congress, by policy makers, by local and state legislatures, it is unthinkable to exclude patients from weighing in on the very issues that affect us. Trust me: you’re going to hear from us anyway. Don’t let it be while you’re backtracking from an ill-informed decision. Let it be when you’re discussing the very thing that we’re experts at living with. There’s a reason we’re experts at diabetes. We live with it every single day. Help us help you.

– In all you do, remember: People With Diabetes are worthy of your respect, consideration, and empathy. If you don’t yet possess empathy, it’s not too late to get some. Trust me, it will come in handy. All great leaders throughout our history have not only possessed empathy, they have displayed it often in executing the duties of office. All poor leaders in our nation’s history have lacked empathy. It is a necessary component of accepting the responsibility of any public office.

– Finally: if it’s not too much trouble, I’d like a slice of pie on my Diaversary this year. Anything that doesn’t contain marshmallow, meringue, or pudding.
 
 
I’m Stephen Shaul, and I approve this message.

Vote for Diabetes this November. To make your voice heard, PLEASE VOTE. Diabetes Patient Advocacy Coalition makes it easy to share your concerns to all the candidates right now: CLICK HERE.

Will my pump get hacked? Maybe not. But my phone? Maybe.

Once again, the U.S. Food and Drug Administration is inviting us to a public workshop… this time, in January, to talk about cybersecurity and our diabetes devices.

What? Who would want to hack my insulin pump?
2016Workshop
The truth is, probably no one. But as we know all too well, the world is more complicated than that. Especially lately.

Are you using a CGM? Is it the new Dexcom G5? Is it something else that is using a wireless signal to send data to an insulin pump, a watch, or a smart phone? Ever want to use something like that?

What about uploads? Do you upload data to DiaSend or some other website? Does your provider? Do they download from one of those sites?

Guess what? All of that can be hacked.

That’s what I’m worried about. Now that we have Bluetooth-enabled devices, and we’re able to start to see personal medical information on our phones, how do we protect ourselves? How do we engage both device makers and FDA to better protect us in the event something is compromised?

Let’s face it: maybe the question isn’t “can it be hacked?”; maybe the question should really be “what do we do if my device gets hacked?”.

I’m not in favor of backing up the trolley on innovative ways to view and use our data. But I think it’s smart and altogether appropriate that FDA is bringing people together to talk about it. I don’t want to not have the latest and greatest technology available to help me live a better, healthier life. But I think it makes sense to define protocols for how to react when/if someone gets access to something they’re not supposed to have access to. How do we protect ourselves? It’s a classic “fail to plan, plan to fail” scenario.

Just off the top of my head, I have questions about whether makers will be properly educating users about risks of a data breach, and how safe or vulnerable their device is to attack (while at the same time not scaring the bejeezus out of patients—it’s a fine line). Also, if my phone is hacked, what’s the protocol for how to react? What are the steps we should take in the event of someone hacking our phone and stealing our personal health information?

I know what some of you might be saying: it’s up to the phone maker to deal with that situation. True, in part. But what if a hacker is using the Bluetooth signal coming from my CGM to hack into my phone? If that happens, what is the manufacturer’s plan to address this and limit interruptions or theft of information?

I’m not really worried about someone hacking my diabetes devices. I am really worried about someone hacking my health information, either through an upload site, a smart phone, or by some other means. And really, I’m worried about whether anyone, anywhere, has any plan to deal with that if it happens.
 
 
If you want to know more about this two day public workshop, or register to attend, just click on the image above.
 

Let’s face it: We’re already being Shkrelied.

By now, we’ve all heard about Martin Shkreli, the former hedge fund manager who realized he could make more money in the pharmaceutical space and, through his firm Turing Pharmaceuticals, purchased the drug Daraprim. Daraprim is used to treat malaria, and more importantly, helps in treating AIDS patients as well. Prior to Mr. Shkreli’s purchase, Daraprim was selling for around $13.50 per pill. After the purchase, Mr. Shkreli increased the price of Daraprim to $750.00 per pill.

The very idea of doing such a thing, in pricing a drug that patients need, at a certain price simply because there is money to be made, is a very scary proposition for diabetes patients. Kelly Kunik did an excellent job of explaining why HERE.

But the honest truth is, sadly, that this is already happening to People With Diabetes.

I’m not going to call out anyone. I’ve written about costs of drugs and devices HERE and HERE. The truth is that we are already paying a great deal for drugs and devices that keep us healthy and, you know, alive. Unless they’re not great money managers, these companies are making a great deal of profit. They’re certainly generating a lot of revenue. In many cases, they’re generating a lot of revenue for things that haven’t changed much, if at all, for years.

When you’re generating at least over 3.5 billion dollars for your drug in the United States alone, each year, for years at a time, the notion of “We need to price our drug at this level to help fund our development and research” rings hollow. Certainly, research and development must be funded. But if your drug is generating a billion dollars in profit each year in the USA, for example, for ten years, for example, that’s ten billion dollars. If your drug costs a billion, billion and a half to develop, get FDA approval, manufacture, and bring to market, how long does it really take to make enough money on your current drug before you’ve paid the bill for your next drug?

And let’s not forget that sometimes the people making money are the insurance companies who cover our medications or devices. The insulins on my drug provider’s formulary list have changed three times in five years. That is not happening out of patient need. It’s happening out of corporate greed. The drug provider cuts a deal with a drug maker or manufacturer, puts the drug on the formulary list, takes the drug maker they could not cut a deal with off the formulary list, and in each case, take their own slice of the pie.

I haven’t even gotten to the question of generic insulin yet. But each year that goes by with no generics or low cost options for a 95 year old drug, ever increasing prices for existing medications, and no reasonable explanation of why gets me a little bit hotter under the collar. Oh, and by the way, no one in the federal government is stepping up to try and rein in the gouging of patients, even if doing so might actually help save a few dollars for Medicare and Medicaid, and by extension, our federal budget.

I’m grateful for the contributions that device and drug makers have made toward improving our lives with diabetes. That we must pay such a dear premium for these contributions, simply because we’re stuck with a disease we can’t get rid of, should be too high a price to pay in a world in which a great deal of money has already been made on these things.

In the end, it may have been Shkreli’s instant robber baron tendencies that caused such a public uproar, causing him to lower the price of daraprim a bit after the initial announcement. A competitor making a similar drug has lowered their price to just $1.00 per pill, further cutting into his new venture. I fear that large companies with careful, experienced number crunchers and public relations machines may be doing a much more savvy job of getting us to the same point, without many realizing it.

I hate to say it, but when I look at the numbers, it looks to me like People With Diabetes are already being Shkrelied by the companies we rely on for insulin, insulin pumps, and the like. I think it should be okay for us to say so, or at least ask why. And we deserve an honest accounting.
 

Public Workshop Alert.

After writing here for 3½ years, I can tell you that there is no shortage of people who like to add their two cents on a subject. Whether it’s insulin costs or the importance of Medicare coverage for CGM users, the Diabetes Online Community knows how to speak up when asked.

Here’s something you may not have heard of yet, and it’s tailor-made for you to learn something and speak up too.

On September 29 and 30, the U.S. Food and Drug Administration is hosting a public workshop. The workshop is geared toward the discussion of patient labeling on medical devices, like insulin pumps and continuous glucose monitors (and maybe artificial pancreas systems?). To be fair, it is not specifically diabetes related, but discussions at this event could certainly have implications for People With Diabetes.
FDA
The workshop will be held at FDA’s sprawling White Oak campus in Silver Spring, Maryland, outside of our nation’s capital. The two day agenda includes presentations from FDA staff and others, and will cover things like FDA’s development and review process, new approaches to patient labeling that aren’t necessarily paper-based, user assistance information, and more. I really like the way day two begins, with a session on Identifying the Gaps in patient labeling, followed by a session on Closing the Gaps in patient labeling.

If you live in or near Washington, D.C., this is an awesome opportunity to not only find out more about patient labeling of our devices, but actually join in the discussion too. Let me give you the link so you can find out more:
CLICK HERE to find out more and register for this public workshop
 
 
Also: Although there are no details yet, FDA says that there will be a webcast of this workshop.
 
 
So… for everyone who says, “What can I do?”, my answer is this. You can do this. You can listen in, or attend, in person, this public workshop. You can take notes. You can form your own opinion. If you are there in person, you can speak on behalf of all of us who are living with or affected by diabetes. When it’s over, you can tell everyone you know about what happened and what was discussed.

And I will be thankful you were there for me.
 

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