Category Archives: Advocacy

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.


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.


Spare a rose yet?

The cause that everyone loves and loves to contribute to is back. The Spare a Rose, Save a Child campaign is in full swing this week as we get closer to Valentine’s Day, February 14.

Can you believe this is the sixth year for Spare a Rose? Ever since 2013, the Diabetes Online Community has led the way in promoting this wonderful fundraiser for the International Diabetes Federation.

The idea is simple: if you have a special someone who you buy a dozen roses for on Valentine’s Day, consider buying one less rose and donating the cost of that rose to the IDF’s Life for a Child Program, which helps provide insulin, diabetes supplies, and education to kids in less resourced countries. You know, the places where it’s hard to get and pay for these things.

As we’ve said before, the cost of one rose saves the life of a child for one month. The cost of a dozen roses gains a child in another part of the world an entire year to play, go to school, and be with their families. Who doesn’t love that?

There are children all over the world who are depending on us. So please, take time right now. Go to

On behalf of myself, the diabetes community, and the parents of children in need, Thank You.
While I’m at it, let me send a shoutout to all of the diabetes podcasters taking part in the third annual Diabetes Podcast Week!

All over the internet, podcasters are helping to raise awareness of the Spare a Rose, Save a Child campaign. I’m retooling my podcast right now (back very soon), so I’m not able to take part. But I’m happy to let you know who you can connect with this week to get your diabetes podcast fix, and to hear more about Spare a Rose, Save a Child: simply go to and find out who will be rolling out a new episode during this special week.

It’s one of my favorite weeks of the year, and while I won’t be a part of it this time, I very much look forward to hearing everyone else. You should listen too!

And finally, I don’t want to forget to wish you a wonderful Valentine’s Day full of love and saving the lives of children with diabetes.


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.

Got a phone? You’re an advocate.

You know, 2017 was quite a year in health care in the USA. So, what’s happening in health care in 2018?

Pretty much the same things.

Any successes that were achieved in terms of awareness on drug pricing, or access to care, or anything else have been met with continued explanations and excuses, but not any real progress. In all fairness, the rollout of Eli Lilly’s Basaglar and Novo Nordisk’s Fiasp have been positive developments.

But they won’t mean much if few can afford those, or if insurance companies continue to take away choice from patients by only allowing one brand of drug to be on a plan’s formulary, while forcing patients on the non-formulary brands to use something that may not work best for them (a practice known as non-medical switching).

In 2017, successes that came from helping to defeat the forces trying to rip apart PPACA (Obamacare) were hurt by repeal of the individual mandate, the provision in PPACA that reduced overall costs by requiring everyone to have coverage. That happened in the “tax reform” package passed and signed into law last month.

There are other questions, of course… what’s going to happen with the Special Diabetes Program, used to help fund research? What about CHIP, the Children’s Health Insurance Program, which covers many disadvantaged kids living with diabetes? It appears that the furor over partisan politics has left many previously no-brainer health care initiatives in limbo.

Buckle up, kids. It’s going to be another crazy year of fighting to hold on to things that we’ve already fought hard for many times. As a result of congress and the president blowing a trillion and a half dollar hole in the federal budget so they can help insurers and drug makers (among others who were already making more money than ever before), every single piece of spending is in danger of being cut to help make up the voluntary deficit they created.

Does this make you mad? It makes me mad. What do we do now?

First of all, we download the DPAC app. Diabetes Patient Advocacy Coalition will keep you updated on hot-button topics, and most of all, give you easy, quick ways to add your voice to the conversation. And wow, do we need your voice added to the conversation.

In addition, the American Diabetes Association and JDRF are doing a super job of advocating on our behalf, and they could use your support. They are also employing easy, quick tactics to help people living with and affected by diabetes join the advocacy effort from wherever they live. Get on their advocacy mailing lists and start communicating.

And don’t forget, you can always use your phone to actually speak with a person too. Contact your congressperson, senator, or even your president and let them know the score. Let them know you won’t be going away.

We don’t have to go all the way to Washington to share our personal stories. We don’t have to schedule time with a member of congress, hoping to get a chance to speak. We can speak now, loudly, and in unison, and easier than ever before.

If you have a phone, you are an advocate.

Advocacy with a little “a”.


However you hashtag it, Diabetes Awareness Month is here again. And right behind it, a feeling of being overwhelmed by the sheer magnitude of all the posts and blue circles and everything else that makes up November for those of us living with and affected by this disease.

Then, sometime after we get over feeling overwhelmed, we move into the feeling guilty phase, where we compare ourselves to those who seem to have all their DAM Diabetes Awareness Month shit together better than we do. Especially when it comes to advocacy.

So before this gets out of hand, let’s stop long enough to take a big breath…

I’m fond of saying this to people, and I’ll probably say it tonight when I speak in front of a group from our area. This might even come as a shock to you, but here it is:

The effects of advocacy are large…
The steps we take to practice advocacy are often very small.

Hey, I want to take on the world too, and I want to bring the diabetes awareness to the masses in ways that have never been imagined before. Will I? Not this week.

Instead, tonight, I’ll sit with my neighbor, a dietician at Johns Hopkins Hospital, in front of about 20 Lions Club members. I’ll tell them about what it’s like to have to think about every single piece of food you put in your mouth, every time you eat.

I like to call that advocacy with a little a. I won’t be presenting in front of hundreds at some symposium on another continent. I won’t be crossing the country to organize and lead a protest. Instead, I’ll be heading off to Golden Corral and sharing what I know, so the people in attendance can share my message with others.

It’s a small thing to do, this advocacy with a little a. But sharing our story with others is just as important as symposia and protests. And just as powerful.

Each of us, regardless of our education level or job status or social media profile have a story to tell. It’s our story, full of chapters that many others have written, but no one else has experienced quite the way we have. We are the authors of our own epic.

Our unique perspective on life with diabetes may be exactly what another person needs to hear. It may be the exact message they’ve been searching for. Without you sharing your story, they might not receive the message you are uniquely qualified to deliver.

So before you get overwhelmed, or heaven forbid, feel guilty about coming up short this November, remember:

It’s not a contest.

The effects of advocacy are huge.

The steps we take to practice advocacy are often very small.

Advocacy with a little a is powerful, no matter what the calendar says.

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