Tag Archives: Christel Marchand Aprigliano

One day, two meetings.

Two days, one meeting. No, wait… strike that. ONE day, TWO meetings.

Last Wednesday, I was in two places on the same day, though, fortunately, not at the same time. The first gathering was in Washington, D.C., a few blocks from the White House, at the Ronald Reagan Building and International Trade Center, for this year’s #HCIDC summit. In the afternoon, it was back to Baltimore for my quarterly meeting of Maryland’s Advisory Council on Health and Wellness.

First, the D.C. meeting: Presented by West Health, which is a non-partisan group dedicated to more fair and affordable access to better care for all Americans, the Healthcare Costs Innovation Summit turned out to be less than exciting.

It wasn’t only because I heard viewpoints that didn’t agree with mine, though I certainly did hear some of that. The thing is, we’re always more sensitive to opinions that we think are misguided or out of touch with reality, regardless of our reality.

Among the attendees I sat with in the ampitheater were DPAC’s CEO, Christel Marchand Aprigliano, and DPAC’s Leyla Mansour-Cole, who has been a guest on the Diabetes By The Numbers podcast. It was Christel who first noticed that the day’s speakers and panels didn’t include one single patient. Even though there was actually a patient-centric session in the afternoon.

It was a bit of a surprise to me, because the other #HCIDC event I attended did include patients. I must say though, I’m still surprised that there are people (I came across a couple of them) and organizations who either forget that patients exist, or can’t imagine that patients would be motivated enough to attend such a conference.

Ordinarily, I would like to spend time talking about some of the presentations, but I only saw one that was worth the time and expense of schlepping to DC at six in the morning. So I’ll spare you the details.

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In the afternoon, I boarded the train and headed back to Baltimore, so I could attend my Advisory Council meeting at the Maryland Department of Health.

I’m searching for words to cover what these meetings are like, but to be honest, they’re hard to describe without boring you to tears. Since this was only our second meeting, there are still a lot of procedural questions, and everyone is still getting comfortable with one another.

In the main part of our meeting with the full council, some time was spent informing us about the legislative calendar (which begins in January and ends in early April). They talked about how we might be asked to weigh in on bills before the house or senate (or both), and how the timing of delivering a position on a bill might work. More to come on that.

There was also a short presentation on some successes that similar groups have achieved, and I thought that was helpful in getting us from the “what do we do?” phase to the “let’s come up with a goal and a plan” phase.

Once we completed the meeting of the full council, we broke out for our first committee meetings. Yes, I am on the Diabetes Committee, and in fact, I am now one of the co-chairs of that committee. In our session this time, we were assisted by two members of the Department of Health’s staff, who very ably helped us work on some ideas and goals for our seven member group.

It was the kind of undertaking that must have been difficult for them. But it was quite fulfilling to me to know that I was actually working on something that might have a positive impact on the citizens of my state. This is what I signed up for, right?

So in the end, one gathering that could have been better, one gathering that made it worth the day’s extra effort. Don’t tell anyone, but I already realize I can’t be this active forever. At some point, some year, I’m going to have to scale it back.

But that’s not this year. Wish me luck, because there is going to be a lot of work ahead of me, and I don’t have this thing all figured out yet. But I know I’m working with a good group in the state of Maryland, and I know our cause is well worth the effort.

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2018, you have big shoes to fill.

Well, it’s been a heck of a year, hasn’t it?

2017 has been the most full, and probably most fulfilling, of my years here at Happy Medium. This year has been quite a bit different from previous years too. Different in a good way.

January started with the beginning of my life on Dexcom, inserting the G5 and employing it as a useful tool in my diabetes management. Even if I complained about sensor and transmitter issues, and having to wear one more thing.

February included participation in the second Diabetes Podcast Week. I really love podcasting, and I wish I had more time to fit it into my schedule. I also shared a few notable quotes, and why they inspire me.

In March, I reported for the fifth time on what is now the JDRF TypeOneNation Summit in Bethesda. They’re getting better at bringing adults into the conversation. I also took the time to remind everyone that Nobody Ever Died from Obamacare.

April 1st marked the March for Health, in many cities across America. I was fortunate enough to be able to speak at the march in Washington, D.C., in the shadow of our nation’s capital. I also shared a story from my personal life that showed me how important it is to support your friends. It wasn’t about what I did… it was about what I learned.

Diabetes Blog Week returned in May this year, and it was wonderful, as always. Also in May, I took time to attend a public workshop at the U.S. Food and Drug Administration. I learned a lot about FDA’s Center for Drug Evaluation and Research, and the drug approval and after-market inspection process.

June brought about the rollouts of the new Accu-Chek Guide glucose meter, and (finally) the Dexcom G5 Mobile App for Android. I couldn’t be happier. I finished up the month with a meeting among diabetes friends, and it reminded me that we need each other now more than ever.

In July, I completed my local 5k run again, and did fairly well for a 55 year old who is a slow runner. I also attended another in the continuing #BeyondA1c discussions, and it was amazing, even if the information shared, at times, felt like I was trying to drink from a fire hose.

August posts included a note on conversations and my reaction to them. “It is always about enlightenment and being more comfortable being myself, and being myself with my diabetes.”

September was a hard month. I went through an unexpected emergency appendectomy, which included a very unexpected complication. Fortunately, I’m all better now.

In October, I shared my new role as a member of Maryland’s Advisory Council on Health and Wellness, and how this new role means I’ll be serving more than just the diabetes patients in my state. I’ll be serving all of the citizens of my state.

In November, I tried to remind everyone that while advocacy is often practiced with a little “a”, the effects of that advocacy can be very big indeed. I also went to a meeting at the U.S. Department of Health and Human Services, where I discovered that I was Enlightened, but Unknowing.

And in December, I’ve talked about doing a trial of the new-to-the-USA Freestyle Libre CGM. And I presented a list of 8 gifts that People With Diabetes could really use right now.

I would be remiss if I neglected to mention the two wonderful Diabetes UnConferences that took place in February and October. Or the fact that we’ve sent out another 15 or 20 Champion Athlete With Diabetes medals. These are feel good stories every single time. I also love hosting the Diabetes By The Numbers podcast, and hope to bring you more episodes in 2018. And thanks to Cherise Shockley and the followers on Twitter for the privilege and fun times shared while hosting some of the #DSMA chats throughout the year.

Thanks also to Christel Marchand Aprigliano for the honor and privilege of representing DPAC at Friends for Life events in July and October. We learn from heroes. We are supported by friends.

This is where I express my gratitude to you for visiting this space on a regular basis… I could do this without you, but it wouldn’t be as meaningful or as fun. Also, I hope that you have had a full and fulfilling year too. Finally, I want to strongly express my desire for all of us to work toward less division, less cost, more access, more support, and mostly, less burden of living with diabetes.

Goodbye 2017… you were a whirlwind, but a remarkable year.

Hello 2018… you have some pretty big shoes to fill.

Diabetes By The Numbers (Part 3): Christel Marchand Aprigliano and DPAC.

Time now for the third and final part of my conversation with Christel Marchand Aprigliano. If you haven’t yet listened to the first two parts of our chat, please go back after this episode and listen to them, because they are well worth your time.

In this episode, we talk about Diabetes Patient Advocacy Coalition, or DPAC. Christel and Bennet Dunlap started DPAC as a way to help amplify the voice of the patient to elected officials and policy makers. They provide a slew of tools that empower friends, family, and fellow advocates to take action on a number of diabetes-centric issues. Often, in less than one minute.

Note: I volunteered with DPAC in 2016, and plan to do so again in 2017.
Also, I should mention that this interview was recorded after the November 2016 election, but prior to the beginning of the 115th U.S. Congress in 2017.

Thanks so much to Christel for sitting down for this conversation. Enjoy, and get your advocacy on!
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

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

Diabetes By The Numbers (Part 1): Christel Marchand Aprigliano talks about the Diabetes UnConference.

I can’t tell you how excited I am to finally share a conversation with Christel Marchand Aprigliano. In three parts.

Christel, as I mention in the introduction, is a force in the diabetes world. Until there isn’t a diabetes world any longer, we can only hope to have advocates like her who get in the trenches and fight for the things that are important to those of us living with this disease.

In part two of our conversation, you’ll hear about one of the hot topics of the day, insulin pricing, where roles are slightly reversed, and I’m the feisty one. Part three will cover Diabetes Patient Advocacy Coalition, and how using the easy button can help you get your diabetes advocacy started, and up your diabetes advocacy, all in less than two minutes. Those episodes are still to come, and you’re not going to want to miss them.

Today, we talk about the unique gathering known as the Diabetes UnConference. Christel covers all the things that make the UnConference life-affirming. We discuss the No Social Media policy that exists during the sessions on Saturday and Sunday, and why that is so important to attendees. And Christel admits that her intentions in creating the UnConference were not entirely altruistic (her words, not mine). She needs it just as much as the rest of us.

If you’re in a place in your walk with diabetes where you could use some space to vent, or learn, share, and meet new friends, whether diabetes has been in your life for days, weeks, months, or years, this is the podcast episode you’ve been waiting to hear.

Full disclosure: I will be a facilitator at the Diabetes UnConference in both locations this year. I am not compensated in any way for this interview, except in the good vibes that come with going one on one with a person whom you admire and trust and learn from at every turn.

DBTN

Reference Material – Click below for more information on this topic

Christel Marchand Aprigliano writes about life with diabetes at:
theperfectd.com

Find out everything about the Diabetes UnConference (and read experiences from attendees too), by going to:
DiabetesUnConference.com

The Diabetes UnConference will be held February 10, 11, and 12 at the Westin Las Vegas. Register by January 24 by going to:
DiabetesUnConference.com/register

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