Two Minute Diabetes Advocacy: #Vote4DM

If you have two minutes, you can make a difference for people with diabetes (even if YOU don’t have it). Got a Twitter handle? Have we got a deal for you…708615_95129272

It’s an exciting time of year! It’s football voting season. Congress seats will be up for grabs and we want to remind those currently in power that they can’t forget the millions of people with diabetes and their friends vote. And we want them to know what’s important.

You want your voice heard in Congress?

Then tell them to #Vote4DM.

There are three bills that are currently in play up on Capitol Hill:

S539/HR1074 – National Diabetes Clinical Care Commission Act

Did you know that there are 37 federal agencies that play some role in the prevention and treatment of diabetes?  (Have you ever worked with 37 people in one group? Try 37 agencies!!!) These agencies aren’t always working together, resulting in miscommunication (or lack of communication), reinventing the wheel, and wasting of resources.

The National Diabetes Clinical Care Commission Act will coordinate diabetes efforts. The Commission will include federal agency representatives, patients and health care providers, and will use existing funds at no extra cost to taxpayers to do its work.

S945/HR1274 – Access to Quality Diabetes Education Acts

This bill will increase access to diabetes self-management training (DSMT) by designating credentialed diabetes educators as certified providers for purposes of outpatient DSMT services under Medicare Part B. It’s “budget neutral“, meaning that the cost of the outpatient services will be offset by the savings provided with the program.

 S. 2689/HR5644 – Medicare CGM Access Act of 2014

Medicare does not currently cover CGM devices, leaving people over 65 with type 1 diabetes (T1D) without coverage for continuous glucose monitors. Did you know that right now, costs for a hypoglycemia inpatient admission average $17,564 per visit!?

Passage of the bill will facilitate Medicare coverage of CGMs, and help pave the way for the next generation of CGM-related technologies, such as artificial pancreas (AP) systems.

unnamed-3Here’s what you can do.

Participate in the two Tweet-Ins for #Vote4DM: a 24 hour Tweet-In beginning on 10/22 (Wednesday) at 8pm EST and then another 24 hour Tweet-In beginning on 10/29 at 8pm EST. (If you can’t make these times, you can still tweet these messages out. It’s just important that you tweet them!)

StripSafely‘s made it so incredibly easy for you to use the power of Twitter for good.

Let’s get a 100% #VOTE4DM from our Congressional representatives and vote diabetes out of office.

1. Find your representative in Congress easily by clicking on this link and entering your zip code. (Remember that name or keep that page open for your reference.)

2. Go to the StripSafely Twitter page and let the blitz begin. (Look! A football reference!)

  • You will send three Tweets per person on the list: One for each of the bills currently on the Hill.
  • We are either asking them to cosponsor the bill or thanking them for cosponsoring the bill.

Now:

  •  Tweet the Senate and House leadership and the Diabetes Caucus leadership, regardless of what state you live in.
  •  Tweet your state senator(s) and district representative. 

3. Share the StripSafely Twitter page with anyone who has diabetes or cares about someone with diabetes. (That means share with everyone you know.) Ask them to tweet. 

And that’s it. Mark the date and time in your calendar and help us raise awareness for these non-partisan bills that will help people with diabetes. Share this info with people via Facebook, Twitter, and emails. We would love to shake the Twitter tree and get Congress to see that we won’t be quiet anymore about keeping us safe!

 

#DOCAsksFDA Needs You

FDACalling all PWDs! Calling all PWDs! Pick up the bat phone!

 

O.K., really, just need you to take a quick survey to help the entire diabetes community. 

On November 3, the FDA will host an unprecedented discussion between the diabetes community and senior agency leadership (both drugs and devices). 

The event will be live webcast from 1 – 4 pm.

How much of a big deal is this?

Big. Super mega colossal big. 

The event will include a panel of patients (T1 and T2), as well as representatives from ADA, JDRF, and diaTribe.

Each of us live with challenges due to our diabetes every day. Take a few moments to share your thoughts on what’s important when it comes to living with diabetes.

The survey, posted over at Diatribe, is short. The results will go DIRECTLY to the peeps over at FDA and will influence the dialog that will happen on November 3rd. Diatribe is asking those with diabetes (Type 1, Type 2, MODY, LADA, etc.) to help gather all of our thoughts.

We need to show the FDA that patients care about these issues, that patients have valuable input to share, and that the treatment options we have are still not good enough. 

As soon as the link to register for the live event is posted, I’ll get you the details. In the meantime, the survey awaits your input.

Help the FDA understand what we want for our future.

They’re listening.

Let’s tell them.

Glucagon

glucagon-extinguisherThe red box.

I’ve shown it to coworkers. To family. To friends. I open the box up, show them the contents, and go through a complicated pantomime of what they would need to do. (Marcel Marceau is rolling in his grave. Silently, of course.) I had one staff meeting where my team played Rock Paper Scissors for who would use the red box. Make no mistake – it was the loser who got to administer it on me.

The red box is my glucagon kit and in all my years of T1, it has been used twice on me, and I was awake each time (although it was close). If you are having a severe hypoglycemic episode and can’t ingest glucose (because you’re unconscious or throwing up or can’t get another gram of glucose into you by mouth), it’s what’s going to help you.

It’s an insurance policy. The kits do expire and they’re aren’t cheap, even with a prescription, but it’s worth having – if you have someone with you who knows what the hell to do with it. It’s not a “take it and jab it into her butt and there you go” sort of deal. While you are incapacitated (and let’s be honest… if your blood sugar is 25, you’re not exactly spouting off the Declaration Proclamation verbatim, although you may think you are), the individual you trusted to use this kit must follow a set of directions that involves a few steps. It’s not like someone is going to rifle through your things and say…

“Hey, look! A glucagon emergency kit! Let me sit down and read the directions and get comfortable with this concept and figure out what to do…wow, there are a lot of steps… before I plunge a needle into your…”

If they don’t know what it is, what it’s for, what they need to do, it’s going to sit there.

So, here’s my challenge for you today.

If you have a glucagon kit, talk about it with the people who you love and hang out with you. If you have someone you work with that you trust, talk with him/her. I know that some people don’t want to disclose diabetes at work, but the last thing you want is to pass out and not have anyone understand why.)

  1. Show them where it resides (in your backpack, in the refrigerator, in your bedside drawer).
  2. Explain what it will do for you and what it won’t do.
  3. Tell them that you will do everything to avoid ever having to use this, but if it does need to be used, that you trust them to do whatever it takes to keep you alive – and it will keep you alive.
  4. Pull out the kit, go over the instructions, and answer any questions that they might have about it.
  5. Thank them. This is so important. Thank them for caring enough to help you if you can’t help yourself. It’s just as scary for them as it is for you when you are crazy low and/or unconscious.

 

I have an Eli Lilly Glucagon Emergency Kit for Low Blood Sugar. And you know what Eli Lilly did?

They made an app for the iPad and iPhone, giving you easy visuals to share and show – and prepare in case something does happen.

This is the website where you can get more info and click to download the app. I put it on my iPhone and it’s very easy to use:

www.lillyglucagon.com

app-screenshots

Until there are easier ways to administer glucagon (and there will be, because I believe that what is currently in clinical trials will become FDA approved – administered nasally versus intramuscular injection? Oh, yes.), it’s important that we give ourselves and those who are around us the tools and resources to help. (That nasal glucagon link? They are still recruiting, so you can help us all out if you are near a trial center.)

Now, what if you don’t have a glucagon kit?

Get one. Ask your doctor for a prescription and get one from your pharmacy. (Note: check the expiration date on the kit while you are standing at the pharmacy window. Do not accept a kit that has less than a year left to use it. Unlike some other supplies, this one will become less potent after the expiration date and because it’s expensive, don’t waste your money on a kit with just a few months left.)

As I said before, they are expensive and it’s one of the few things about my diabetes management in which I want to let expire.

Why do I tell you this?

I had a severe hypo a few weeks ago. Severe enough that I needed John to help me, because I could not longer use my legs to get more glucose. I was scared.

And after the disastrous event, both of us admitted that the red box was about a minute away from being used. If I hadn’t forced (and kept down) another juice box, it would have been a reality. I am thankful that I took the time to show John how it should be used and trust his judgement. I want everyone to be thankful. And everyone to have a red box – and never use it.

PIP PIP! I’m Not So Cheerio Right (Write) Now…

Remember how I wrote earlier this week that my finger was detriggered?

Um. About that.

If I am correct (and I’ll find out on Monday, so please place your bets now), I have developed a PIP joint flexion contracture in that finger. My finger will not fully extend, so when I give someone a high five, it’s more like a high four and a half. And the joint is locking and clicking.

What does this mean for me? Again… place your bets. I am hoping that I am going to lose the one I’m making with myself, because it would involve another surgery.

So, without narcotics (which I took to write this post and get things done around the house), I’m unable to complete the every day tasks I was doing before the surgery. I have so much to do and so much to write about that this is one.big.bummer. (And I abhor narcotics, so I’m not the happiest of campers right now.)

I often tell people that it’s not the big complications that make daily life with diabetes tough; it’s the little things. This is a little thing in the grand scheme of it all, but right now, it’s coloring everything I attempt to do. My blood sugars are “fine” for a PWD who is under stress, but I’m looking for some resolution.

So, that’s why the posts have been non-existent. Hopefully, Monday, I’ll have an idea and can move forward.

Bedtime Bribery With Stitches

Being an e-patient is one thing. Being an actual patient is another.

My finger is detriggered. You would think that after four of these (actually five, but one got done twice) surgeries, I would remember that the healing process takes time…and painkillers are needed to do the exercises to get my finger to fully extend. What I do remember is that it is so important to do the exercises, as much as it hurts, because otherwise… you can negate the whole purpose of the trigger release.

It’s a few days post-surgery and The Kid has developed a fascination with my stitches. I have stooped to use them for bribery. “If you put your pajamas on, you can look at them.” Anything to speed up bedtime.

The world continues to revolve while I am recuperating, so as I gather thoughts about last week (I was up in DC and have a head full of good things to share), I’ll give you some tidbits that you should know about:

  • Kim Vlasnik made me cry. Not the Victorian-dab-your-eye-with-an-embroidered-hankerchief quiet cry, but a keening, gasping, aching cry. Her MedX talk captured the essence of what endures beyond the physical and why our community is important. I want to thrust my iPhone at strangers and shout: “Watch her. Listen to her. This. This.”

 

  • WDD Treasure Hunt webpageLike treasure hunts? The International Diabetes Federation apparently does and is giving prizes out as a run-up to World Diabetes Day (November 14th). Here’s the details.  You get pins, bracelets, t-shirts, and bragging rights.
  • Yes, it’s almost Diabetes Awareness Month. Much like every year, we will begin to see posts from well-known organizations about the disease and people getting angry that this building and that building won’t light up blue for diabetes when they lit up pink the month before for breast cancer. Here’s a tip: take that anger and put it towards what YOU can do to help raise awareness or advocate for you, your family, or strangers with diabetes in your community or your government. We can light a candle or curse the darkness. You pick. Don’t know where to start? How about here. Or here.  Or create something all your own. Every voice matters. 
  • The World Diabetes Congress (which will be in Vancouver) is calling for abstracts, beginning in February. They are providing 100 grants to attend for individuals from all over the world, which includes the registration and travel costs. What’s my beef? You must be 40 years of age or younger. I’m sorry, but that’s NOT right. I get that there are bright, young individuals who have things to say and want to learn… but there are also those who happen to be over 40 (ahem) who also have things to say and want to learn. To attach an arbitrary cut off age like this is… unacceptable. Yes, I’m going to inquire. Yes, I have something to say about it.
  • Marjorie1Heroes sometimes wear shaggy coats. A Sweet Life, one of the best diabetes community media sources, is fundraising with Marjorie. Don’t know who she is? You need to know why she’s important to every.single.one.of.us. – and then help support A Sweet Life.

Off to do my hand exercises, which makes me look like I’m trying to channel The Bangles’ lead singer.

Walk Like An Egyptian.