Monthly Archives: June 2012

Patient Protection and Affordable Care Act. Still Here.

You may have heard that the Patient Protection and Affordable Care Act was upheld by the Supreme Court of the United States yesterday.

That’s an understatement compared to the avalanche of media coverage on this subject just since the ruling was handed down. Let me add a couple of things, and then we can all breathe and relax for the weekend.

     

  • Despite how you may feel about the reach of our government, the law still has some provisions that mean a lot to People With Diabetes (PWDs) and parents of Children With Diabetes (CWDs). If you’re a parent, you can cover your child up to age 26, whether or not they live with you, whether or not they have other coverage available. So if your coverage is better than their coverage at work, they can stay on your plan up to age 26. For adults beyond 26, it means an end to insurance companies, employers, and labor unions denying coverage due to pre-existing conditions like diabetes (in 2014… let’s hope we don’t get sick before then). And yes, I have had to make a decision not to take a job because my pre-existing condition would not be covered.
  •  

  • The law stands today, thanks in part to the Supreme Court’s decision. But if the republicans take congress and the White House in the November elections, the law will be repealed. All of it. All of the good parts and bad parts of the legislation gone. Back to square one. I’m not making a political statement. I’m proud to be politically independent. I’ve voted for republicans and democrats over the years. I’m also repeating what I’ve heard many times from many republican candidates.
  •  

  • Assuming the law stays, don’t expect it to remain in its current state in perpetuity (like that big word?). Like almost all federal laws, it will change over time. Often with the political landscape. Provisions will be added, and new challenges will be brought before the court, and after those decisions, more tweaks will be made to the law. If it holds, this law will look different 10 years from now, and still different 20 years from now, and different again 30 years from now. So let’s not get so hyped up over what this means over the next four plus months until the election.
  •  
    I just hope I’m still around in 30 years. And regardless of whether the Patient Protection and Affordable Care Act (or Obamacare, if you like) is still here then or not, I really hope that our citizens can get the care they need, when they need it, without a lot of bickering and hatred. Just because it’s right. For everyone. No exceptions.
     
    I think that’s something we can all agree on.
     
     
     

Advertisements

JDRF and the Artificial Pancreas Project.

A week ago Tuesday was the annual meeting of the Maryland JDRF. I was happy to get out to an actual JDRF event for the first time in a long time. It was a fun event and I got to meet some very nice people.

In addition to the normal business that gets done at the annual meeting (election of board members, officers, etc.), they handed out awards to many who did a fantastic job of organizing teams, raising money, and volunteering for the JDRF walk in Baltimore held back in April. The amazing amount of greatness that results from these grassroots efforts are immeasurable. I’m adding this to my calendar for next year everyone… count me in.

The final part of the evening was well worth waiting for. A member of the staff at the Center for Diabetes Technology at the University of Virginia School of Medicine talked about the Artificial Pancreas Project. I had heard the term Artificial Pancreas, and I had read an occasional post or two about it, and I knew that the FDA had approved the AP for outpatient clinical trials, but it wasn’t until this talk (and after catching up by phone with the speaker early this week) that I realized there is still much for me to learn about this fascinating technology.

Now, before you say it, I will: This is not a cure. I get that. And trust me… I want a cure as much as you do. I also have to admit to some skepticism when it comes to wealthy companies that spend a lot of money developing gadgets that can help to keep our conditions chronic, rather than searching for a way to make our conditions history.

That said, there’s no denying the fact that the Artificial Pancreas, or something like it, is something that could have a significant, life-altering (life-affirming?) impact on millions of us living with diabetes. Let me tell you why. I’m not blessed with total recall, but I’ll try to give you what I can from this interesting presentation.

First, a brief description: the Artificial Pancreas is a device that works with your insulin pump and continuous glucose monitor (CGM) to make adjustments in the delivery of insulin throughout the day, based on multiple factors, including: your glucose level and how it’s trending; what you just ate and how you bloused for it; whether you’re heading out to exercise, and more. The primary function is to keep your BGs in a safe range. And more importantly, to keep you out of the danger zones, both high and low.

It’s all done on a mobile device. That’s right… all the technology is loaded onto an Android phone. The device has had the software cleaned, then loaded with the AP platform. Software is loaded to the phone as Android apps.

It’s 3G, WiFi, and Bluetooth capable. Per FDA guidelines, it’s outbound only, so you won’t get any text messages or voicemail. Also, no phone or browser, and no third party apps… so you won’t be playing Words with Friends on the runway with this sucker.

Why the WiFi if there’s no browser? That’s where the remote monitoring comes in. It’s a way for a parent, or your endocrinologist, or your spouse to monitor your condition without having to make a million calls (are you listening honey?).
The algorithms developed (and still being worked on) are to account for unique things like exercise and pre-bolus and post-bolus conditions. Other algorithms are still being worked on to cover additional factors, like child versus adult or male versus female physiology. Hey, Your Diabetes May Vary, right?

The folks at UVA have also developed a watch-like device that can be used to monitor the AP device. Think about being on a road trip, and you’re unable to take the effort to check out your AP while driving (whether that would even be legal is yet to be determined). So you look at your wrist, and you can see how you’re doing. It means that potentially, if you’re the parent of a CWD who is out on the soccer field, your son or daughter could have the watch on while you monitor the AP from the sideline. Sweet.

That’s just some of what we learned during this fabulous talk.

So, what about the testing? The folks at UVA are conducting both inpatient and outpatient clinical trials on the Artificial Pancreas. The University of Virginia-developed AP was the first to get FDA approval to conduct outpatient clinical trials. And get this: In the entire testing of the UVA-developed Artificial Pancreas, in testing both in Europe and in the USA, patients have encountered zero nighttime lows. Let me say that again: Zero overnight hypoglycemic events.

And what is JDRF’s role in all of this? Most of you probably know already that JDRF has played an integral role in funding research for the Artificial Pancreas. In addition, JDRF has used its influence as an advocate for type 1s to inform lawmakers and urge them to continue funding research; to pester the FDA to accelerate testing on this game-changing technology; and even help with gathering volunteers for clinical trials on this and other exciting advancements in care and technology.

When someone raises another five dollars in a JDRF walk in Wichita, or participates in the Ride to Cure Diabetes in Death Valley, or includes JDRF in their will in upstate New York, they are helping to make this kind of effort possible. When I was diagnosed back in 1991, I was told how lucky I was that I didn’t develop diabetes a generation earlier. That drugs, technology, and overall care had improved so much. Now, 21 years later, we are on the cusp of another leap forward. JDRF is a huge part of that change in the landscape. Guess what, PWDs? The best is yet to come.

Let me finish by leaving you with a few links:

First, information about the Artificial Pancreas at the Center for Diabetes Technology at the University of Virginia School of Medicine. Check out the staff bios and you’ll be impressed at the creativity and knowledge of everyone working on this project:
http://www.medicine.virginia.edu/research/institutes-and-programs/cdt/artifical-pancreas-technology

Interested in becoming part of clinical trials for the Artificial Pancreas at UVA? Send an e-mail here:
artificialpancreas@virginia.edu

JDRF’s official website devoted to the Artificial Pancreas Project:
http://www.artificialpancreasproject.com/

You can also sign up via JDRF to participate in active diabetes clinical trials in the USA:
https://trials.jdrf.org/

Disclosure: Actually, there is no disclosure. Neither the Center for Diabetes Technology at the University of Virginia School of Medicine, nor JDRF influenced me in any way in writing this post. I’m a blogger, not a journalist. But I try to get the facts as accurate as possible. If I missed something somewhere, please let me know.
 
 
 

Random Glucose.

This doesn’t happen very often. Or first thing in the morning:

Something like this, on a beautiful 55 degree June morning (breakfast on the porch!) makes you feel like anything’s possible.

I can do this!

Now get out there and get crackin’, you knuckleheads!
 
 
 

A Non-D Post.

I got a few photos last week, and they’re totally non-diabetes related, but I wanted to share them before they’re too old.

About a week and a half back, Baltimore hosted something called the Star-Spangled Sailabration. It’s part of many events the city will be hosting over the next couple of years, celebrating America’s (and Baltimore’s) involvement in the War of 1812. For this celebration, several tall sailing ships, and some naval vessels, came into Baltimore’s inner harbor from around the world. It was a very cool spectacle watching them sail in, and then sail out, of the harbor.

I was able to get these photos while the ships were leaving the harbor last Tuesday. They are either taken from my desk, or from the window by my desk at work. Just a lucky spot to be.

I’ll get back to the diabetes-related stuff very soon. In the meantime, here are the photos:

This is the only American ship I could catch. Sorry… I had too many meetings to get a photo of everything.

This is a Mexican vessel. If you look closely, you’ll see sailors stationed up on the masts of the ship. All the way up. Don’t believe me? Check out the next photo.

Don’t worry… there’s a rope behind each of the sailors that they’re holding onto. But still, it can’t be easy standing up there.

This ship is from Columbia. The sailors are doing the same thing here, but the sailors are easier to see.


 
 
 

DSMA Blog Carnival. Doing the best I can.

This month’s DSMA Blog Carnival subject has to do with those dreaded (sometimes) visits with the medical professionals that we rely on to help us manage our diabetes. Specifically, the questions are:

Do you get nervous or stressed when you have to go to your endo/doc appointment?
Why or why not? Be honest.

The simple answer is that I don’t stress too much about these visits anymore.

Okay, I stress a little before appointments with my physician. That’s probably because she doesn’t see too many diabetics, and she probably doesn’t have too many male clients. I’ve picked up on that, and I still have trouble talking to her, and that’s partly my fault. I’m working on it. She’s a good doc, and I think we’re both trying.

I don’t really stress at all before visits with my endocrinologist. I try to be as honest as I can, and as diligent at following her plan for me. And if I have trouble with her plan, I tell her why. And then we talk about it. That’s how it should be, I think.

Why do I seem relatively calm about these visits? Mostly that’s due to age, and the fact that I’ve been dealing with the ups and downs of this disease for 21 years. And wow, I can’t count how many of these visits I’ve made over the years, to doctors good and bad. You know what? Whether my numbers are good or bad, I feel like I’m already doing the best I can. At this point, I don’t have to apologize for anything.

But here’s the danger with that kind of logic: It only works if I’m really doing the best I can. If we’re going to expect doctors, nurses, CDEs, etc. to give us the respect we deserve, we need to show that we’re making the effort to manage our care the best we can. That does NOT mean we need to have perfect A1c numbers, that we are meeting our weight loss goals, that we are logging every BG number. It means that we need to show that we’re making the effort to reach our goals. We can’t treat our endos and docs like they’re just the customer service folks who write our prescriptions every 90 days.

However… if YOU ARE making the effort, and your numbers aren’t where you want them, and your doctor’s answer to that is to make you feel guilty for not managing your care better? Then you need to run, not walk away. Find someone who will give you solutions, not shame.

Like a lot of things, these visits are a balancing act. When we’re doing the best we can, really doing it, we can sit with our endos/docs as an equal, with less stress, ready to deal with whatever comes up. And when our medical professionals treat us as individuals, not soulless slags with the standard “how are your sugars” scripted question and answer, call and response routine, we can feel a little less stress about our next visit. Best of luck with your next appointment. Do your best… your very best leading up to it. And don’t take any crap from anyone. I always wanted to say that.

This post is my June entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/june-dsma-blog-carnival-2/
 
 
 

%d bloggers like this: