Tag Archives: Diabetes Patient Advocacy Coalition

DPAC Joins DAA.

News broke this week that Diabetes Patient Advocacy Coalition has joined forces with the larger Diabetes Advocacy Alliance. I’ve spent some time volunteering for DPAC in the past, but regarding this announcement, I don’t know any more than what is publicly available. Let’s take a look at that:

Diabetes Patient Advocacy Coalition is a 501(c)4 organization that helps to promote important diabetes causes before local, state, and federal elected officials and policy makers. DPAC has been successful too… testifying before congress, taking part in important discussions on insulin pricing, and many other achievements.

They’ve delivered an extremely powerful app that helps individual citizens take action on issues quickly and easily. They’ve educated and informed before many, and for what it’s worth, I’ve been proud to represent them at Friends for Life events over the past two years.

Diabetes Advocacy Alliance is just what its name indicates: an Alliance of groups dedicated to advancing the causes important to people living with diabetes. In joining DAA, DPAC will be joining the American Diabetes Association, the American Association of Clinical Endocrinologists, the American Association of Diabetes Educators, the American Medical Association, and others in an effort to collectively amplify all our voices.

The impression I get here is that DPAC is still going to be DPAC. But we’re all aware that there are a number of disparate voices out there, all advocating for diabetes while advocating for different things. Where we’re able to join forces, we appear stronger to the people we’re advocating to.

Joining this alliance should help DPAC partner with other organizations to raise awareness and push legislators to act on our behalf. And in my book, that’s always a plus.

You may ask… what about the corporate organizations that are also part of Diabetes Advocacy Alliance? Is that okay?

Well, first of all, they wanted to be part of the alliance, or they wouldn’t be there. They could have ignored this group, or even spent time and money to try to render it ineffective. Instead, they climbed on board as members.

Second, wow… an organization with members who may not always have the same priorities at the same time… sounds like Washington! If they can do it, DAA can do it too. And believe it or not, there could be times where my goal and a company’s goal may actually be the same. Maybe more often than you might think.

DPAC’s CEO, Christel Marchand Aprigliano, put it this way in the press release announcing the news:

“With the current U.S. healthcare system spending more than 1 in 5 healthcare dollars on diabetes, there has never been a more important time to advocate for the long-term health of our community.”

I could not agree more.

I’m always interested in how new collaborations will turn out. I know that the missions of Diabetes Patient Advocacy Coalition and Diabetes Advocacy Alliance are great for partnering for more people, more effectively, more often. Here’s hoping that my goals remain their goals, and those goals have a greater impact through this collaboration.

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Diabetes By The Numbers (Part 2): Christel Marchand Aprigliano on insulin pricing.

Welcome back to Diabetes By The Numbers.

Today, I feature the second part of my conversation with Christel Marchand Aprigliano.  In this episode, we talk about one of the hot button issues of the day– insulin pricing.

We cover a recent meeting between insulin makers and diabetes advocates, and developments on pricing announced by two of those insulin makers since that meeting took place in November of 2016.
DBTN

Reference Material – Click below for more information on this topic

Christel Marchand Aprigliano writes about diabetes at:
ThePerfectD.com

You can connect with Diabetes Patient Advocacy Coalition, or DPAC, at:
DiabetesPAC.org

It’s about the people.

Like I mentioned before, last week was a very busy week. Part of that week meant being busy in a very pleasant place. Mixing work with pleasure? Okay, I’ll do that.

I spent last Wednesday, Thursday, and Friday working at the DPAC booth at the annual Children With Diabetes Friends for Life event. This is the mother of all diabetes gatherings, with thousands of People With Diabetes and their families descending upon Orlando for nearly an entire week. This was my first experience being there for more than just a day, and admittedly, my experience was not the typical conference-goer experience, but here are some things I experienced and noticed during my time there.
 
 
I arrived on Wednesday morning, about an hour or so after MasterLab began. MasterLab is a one day advocacy workshop presented by Diabetes Hands Foundation. There were a number of presentations, and I hope all of the attendees got a lot out of them, or at least were able to grab a nugget or two that they can use in their advocacy efforts in the future.

What I experienced: I saw many advocates from many countries who were very much into the focus of the day, which was to advocate for everyone living with diabetes. It’s sad to know that diabetes advocacy is needed elsewhere in the world, but good to know that there are stellar advocates living in Columbia, Mexico, Puerto Rico, the UK, and other countries.

What I noticed: Much of the talk was USA-specific, which risks alienating those attending from other countries, but I’m hoping this is a temporary “we’re learning how to do this” kind of thing.
 
 
Diabetes Patient Advocacy Coalition is a remarkable resource for people living with and affected by diabetes. We were able to garner many signatures for the Dexcom G5 labeling petition to the U.S. Food and Drug Administration, which will be holding a hearing on July 21 to discuss the issue. Our goal was to get 5,000 signatures on the petition. As of right now, we’re nearing 6,000. Yay Diabetes Community! The diabetes community was able to rally to this so quickly thanks to the fact that DPAC makes it so easy for someone to add their name and voice to the issues that mean the most to us. I urge you… take a hand in your own diabetes advocacy by going to diabetespac.org and signing a petition or sending an e-mail. We do best when we speak for ourselves. Tell your story. Tell it from the heart.

What I experienced: Despite being “on stage” (to use a Disney term) most of my time there, the exhibit hall was punctuated by bursts of activity before and in between conference sessions, then amazingly slow lulls once the sessions were, um, in session. I’m not sure how I did for DPAC, but I hope I did well, and I was happy and honored to do what I could.

What I noticed: There is still an overwhelming desire for knowledge among the diabetes community, especially its newest members. During my time manning the booth, I met a pair of first-time attendees, grandparents of a young person diagnosed not too long ago. As we discussed our diabetes lives (like you do), and they expressed some of their concerns, they must have seen the “everyone’s been through this phase” look on my face. One of them looked at me and said, “You’ve been living with this for 25 years… we want to know… tell us!“, as only a grandparent can express it. These two wanted to know everything about insulin, devices, burnout, you name it. They were in the right place that week to learn about all those things. And that’s not the only conversation I had like that while I was there. This is one of the many reasons why we need DPAC.
 
 
Finally… the one-on-one, human interactions with people are what make these gatherings special. I’ve said that many times after events like this, but it is an undeniable fact. The Diabetes Online Community has been vital in bringing together people from everywhere who have felt alone living with diabetes. Especially people like me. But the internet can only do so much. While my social media connections helped me crawl out of a depressive shell many years ago, the interpersonal connections have helped me stand tall, and build constructive and meaningful relationships that will hopefully last a lifetime. It’s that much more.
FFL16
What I experienced: The feeling that no matter how big my diabetes circle of friends is, there’s always room for more. It was great seeing existing friends like Karen and Bea and Scott and Mike, but it was also wonderful to finally meet Cara, and meet Tina, and meet Nia (who lives in my city!), and meet Becky, and Trip too. And almost instantly I want to hang out with these people, and advocate for them, and protect them. That feeling comes from actually meeting people and getting to know them at a level that few are capable of, because the one thing you have in common is the one thing that bonds you tightest to each other.

What I noticed: I was not the only one who noticed the absence of Medtronic at FFL. Every other pump manufacturer was there. Dexcom was there too. There are probably reasons for this which I’m not privy to, but many people noticed, and their speculation of why Medtronic was absent covered a broad spectrum of opinions. I’m not sure it matters why Med-T didn’t make it, and maybe it was okay that they weren’t there this year. But to use the word again, the absence of Medtronic allowed others to form their own opinions about products and corporate behavior, whether those opinions were accurate or not.
 
 
Because I spent most of my time working in the exhibit hall, I can’t say that I had a typical conference attendee experience. But because of these moments and others, I did have a typical, wonderful personal experience during my three-plus days in Orlando. Thanks to DHF for my invitation to MasterLab, and a special thank you to Diabetes Patient Advocacy Coalition, Christel Marchand Aprigliano and Bennet Dunlap, for the opportunity to put my mouth where my motivation is. Or something like that.

All of this reinforces the notion that it’s not about the disease, it’s about the people living with the disease. The idea that if you fall into a hole, someone will jump in to help you. Because they’ve been there before, and they know the way out. Our lives don’t get easier with our diabetes diagnosis. But knowing that others are walking the same stretch of road, right alongside us, makes us closer.

Congress, we need your RSVP. Today.

Hello again… it’s me, your friendly neighborhood internet town crier here to let you know that we need your help, by performing your own bit of (less than) 2 minute advocacy.

We (and by we, I mean the ENTIRE Diabetes Community) need your help, right now, this instant.

Over 285 members of the Congressional Diabetes Caucus and the Congressional Black Caucus have been invited to an important briefing on the impact that CMS competitive bidding has been having on senior citizens in my country.

Officially, these influential members of congress have been invited to “The Diabetes Access to Care Coalition for a briefing on ‘Impact of CMS Competitive Bidding Program on Diabetes Beneficiary Safety and Access to Diabetes Testing Supplies Analysis’“. I’ve written about the dangers of CMS competitive bidding, and I want all of my federal lawmakers to know what I know: that CMS competitive bidding costs money, and costs lives. It’s unsustainable.

Better yet, Christel Marchand Aprigliano is presenting to this esteemed group. That’s right… a patient, someone with skin in the game, as the politicians say, is going to spell it out for them. There is no one I would like to see there more.

Where do you come in? Listen… we need as many members of congress and their staff to be there in the room to hear the presentation! That’s where you come in.

Click here to invite your Congressional Representative to this gathering

It’s so easy to do this, and it does so much good. This is your chance to connect directly with your elected representative in Congress. Make sure they hear your voice, then hear Christel’s voice.

We need everyone in the room. But they must RSVP by June 10. Please help them get there by sending them a friendly message.

The whole exercise will take less than 2 minutes. Help save money for the federal government, and save a few lives in the process. CLICK HERE to perform your own Diabetes Advocacy right now… when we need you most.
 

Like these Diabetes Awareness Month links.

It’s Diabetes Awareness Month! Saturday marks another World Diabetes Day.

Guess what? There are still very easy ways to advocate and show your solidarity with your friends who are also living with or affected by this disease. Here are just a few:

Big Blue Test: In case you didn’t know, Big Blue Test is the yearly effort from Diabetes Hands Foundation that encourages us to check our BGs, get up and get moving, then check again and log the results at BigBlueTest.org. Don’t have diabetes? No problem! Just leave out the BG test results. Or, if you really want to, go ahead and prick your finger before and after your exercise anyway. Whatever makes you happy.

The best part is that each test logged helps to raise much needed cash for worthy diabetes organizations like SucreBlue and CarbDM. They’re about 6500 tests short of their goal of 110,000 entries by Saturday night. So do not forget to log those Big Blue Tests, either at the website or via the handy-dandy app.
 
 
CGM coverage for Medicare patients: If you live in the USA, Diabetes Patient Advocacy Coalition makes it super easy to e-mail your congressperson and senators. In fact, I’ll bet you can do it in under one minute. Start the clock! CLICK HERE and get the necessary text, including references to the existing bills before the House and Senate. Enter your information, click submit, and your piece of advocacy is on its way. Really, it doesn’t get any easier than that.
 
 
World Diabetes Day Twitter Chat! Diabetes Community Advocacy Foundation is once again sponsoring hour upon hour of Twitter chats on World Diabetes Day, hosted each hour by a different person, all designed to raise awareness, support one another, and have a few laughs. Check in throughout the day and meet new people from around the world, engage in the conversation, and tell us how your day is going.

This year we’re doing 14 hours of continuous Twitter chat using the hashtag #WDDChat15. Each hour will have a different theme. I’ll be leading off beginning at 7:00 a.m. Eastern time here in the USA, followed at 8:00 by Kelly Kunik. Remember… follow the #WDDChat15 hashtag to join the conversation.
 
 
However your week shapes up, I hope it’s filled with raising awareness and celebrating our fellow friends living with and affected by diabetes. So get going, write those letters, and I’ll talk to you on Saturday morning!
 

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