Tag Archives: advocacy

Advocacy Works.

I suppose we’ve all become jaded a bit over the years. When you ask for intelligent changes to policy or rules, you get used to having your concerns ignored, sometimes validated, and mostly not acted upon.

But a recent announcement flies in the face of that argument, and before any more time goes by, I think it’s important to talk about it.

The news, which you may have heard: the U.S. Centers of Medicare and Medicaid Services (CMS) has agreed to allow seniors on Medicare to view CGM data on their smartphones.

As Diabetes Patient Advocacy Coalition noted, this is pretty big news, and it’s thanks to advocacy of this organization and others, as well as individual advocates across the country, that this injustice has been righted.

There are a couple of reasons why I wanted to talk about this.

To begin with, this is how advocacy is supposed to work. In this instance, people saw that seniors on Medicare were being denied the right to use their smartphones as a medical device. Those advocates banded together and took their message to CMS, who were empowered to consider the advocacy message and act on it. And they did.

Second, I wanted to talk about this win because it’s a win. So often, we advocate for causes, and our causes remain causes for years until some movement happens on them (and that’s the most times I’ve written “causes” in one sentence in my life). Once our cause is helped along by a decision or a product launch or something else, we move on to the next cause so quickly that we almost forget the fact that real progress was actually made.

I don’t want that to happen here. Let’s stop and smell the lithium ion of our cell phone batteries and recognize that something pretty great happened here. And you and I had a hand in making it happen.

Let’s take a moment and remember that advocacy works. And let’s remember to thank all those responsible for making it work.

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So, you want to be an advocate.

So, you say you want to be a bigger advocate… you want to be more involved. This is a little lengthy, but if you can, stay with me here.

You care, right? You care as much as the next guy. You’d like to get an opportunity to be at important events where the nuts and bolts of diabetes issues are discussed. You’d like to be in the room, and you want to be included in the discussion.

Great. No, really, I mean great… we need more advocates. We need more people in the room, and more people breaking down doors to the rooms we can’t get into yet. I’ve heard this a lot over the past six-plus years, and I’m always encouraged by the willingness of others to step forward and add their voice to the conversation.

Look, I haven’t been in the room a lot either, but I’ve been there enough to know that if you’re going to put yourself out there all the time, there are some things you need to be prepared for. Here are just a few:
 
 
A big change in priorities. You think diabetes messes with your schedule? Let’s add in conference calls with other advocates that are important for planning events and strategies. There are webinars, where information is presented that speaks to exactly what you’re interested in. You’re going to get a lot of e-mail that needs attention.

If you have a day job, look out, because most of these things are scheduled in the middle of the day in the middle of the week. If you do it long enough, you’ll find creative ways to work with your bosses so you can be part of these events but still get your work done. Usually in the evenings and on weekends.

Tonight, I’ll be reviewing diabetes statistics for my state again, so when our Advisory Council’s Diabetes committee meets next week, I’ll have a more thorough understanding of the landscape here in Maryland. You can’t just show up for these things… you have to be prepared.

Travel. You’re probably thinking… I love to travel! So do I. Now, let me give you an idea of what my last two advocacy trips looked like:

Get on a plane from home in the middle of the day. Easy enough. Get to my destination, check into the hotel. There are already things happening, even if the conference or summit or whatever hasn’t started yet. I hope you’re not tired from traveling, because there’s networking to do.

Then there’s the event itself. If someone (a company, an organization) is paying for travel and/or accommodations, they’re likely going to schedule something nearly every minute of the time you’re there. When I was in Las Vegas in March, I spent nearly four full days in conference space. Last month, I traveled to Chicago for the first time in thirty years, and I spent a grand total of about 25 minutes outside of the hotel I was staying in. That’s fairly typical.

And once the events were over, I was gone. In Vegas, the conference ended on Friday, and I was on a plane home at 6:00 on Saturday morning. In Chicago, the event ended at 12:30, I immediately boarded a bus to the airport, and after a full pat down at the security checkpoint, had to run so I could barely get to the gate in time to board my plane. I arrived home at 7:00 on Sunday evening, and I was back at work at 8:00 the next morning. Again, a fairly typical conference experience.

And you know what? I do love it! I wouldn’t have traded either of those experiences for anything. But that doesn’t keep me from feeling like I’ve been run over by a truck as I drag my ass into work on Monday morning.

And I haven’t even talked about the time I haven’t spent with my wife or family because I was away. Or the things left undone at home because I wasn’t there to do them.

Are you ready for that? Several times a year? I’ve taken nine days off from my job so far this year, and they’ve all been for various advocacy-related events. That’s not even counting the days I worked early or late so I could leave early another day to attend late afternoon meetings that lasted long enough to get me home around 8:00 that night.

Responsibility to the community. I don’t know how others feel about this, but from my point of view, if I’m going to be somewhere noteworthy, I feel a responsibility to the diabetes community. A responsibility to not only share what was discussed and the various parts of the gatherings I attend, but to share my feelings about what I was just a part of. Even if those feelings aren’t exactly wonderful. People who were not able to be a part of the discussion should know what was discussed, and have a chance to respond if they want to.

I also feel a responsibility to, where I can, try and help others attend these events. Not everyone needs to be at every conference. Not enough deserving people get to go. When people express a desire to go to a conference, a symposium, or a public workshop, I want to help them get there. So I let people know about applications to conferences, or about FDA workshops open to the public. There are truly more advocacy opportunities out there than you might think. To me, advocating means advocating for more than just myself.

Criticism. If you’re going to be somewhere where diabetes is discussed, and you’re there enough, you’re going to be criticized. Either because your stance isn’t what your critic’s stance is on an issue, or because they think you’re a shill for the company who sponsored your trip, or because they’re just bitter about diabetes for one reason or another. Feelings are real, and whether they’re right or wrong, they’re still feelings.

I’ve been lucky… I haven’t been raked over the coals in a public way like some friends have been after being at an event. But at some point, if your advocacy is big enough, you’re going to have to deal with someone who doesn’t see things your way. And you will have two choices: ignore it, or deal with it. Neither are pleasant.

Cost. Whether it’s a conference, a workshop, or even an ADA Tour de Cure ride, there have been many times where I’ve covered my own travel expenses for a weekend or longer. When I went to Las Vegas in March for #HIMSS18, I received a stipend from the Society for Participatory Medicine that covered my airfare and parking at the airport. Four days in the hotel and every single meal out there came out of my own pocket. When I go to Friends for Life Falls Church in October, I’ll be paying for gas and two days in a hotel out of my own pocket.

At least a couple of times every year, if I want to attend something I’m interested in, I have to pay my own way to be there. And that podcast I do? The equipment I use to record it costs money, as does the platform where it’s hosted online. Those Champion Athlete With Diabetes medals? I don’t get those for free.

Sometimes, you have to pay to play in the advocacy game. Again, I wouldn’t trade those costs for anything. But I realize that I’ve been exceptionally lucky to be able to afford them so far.
 
 
Look, I realize I may have scared a few of you off with what I just shared, but I hope I haven’t. Because we need all the advocates we can get. And my experience doesn’t necessarily have to be your experience. Your level of advocacy, how much time you commit, and how much money (if any) you spend are all within your control.

But those are just five things you have to be prepared for if you want to take your advocacy to the next level. With every meeting, every webinar, every conference, I really hope I’m adding something positive to our community. I can tell you that so far, the effort, the cost, and the results have all been worth it for me.

If they’re worth it for you too, then by all means, step up and let your voice be heard. Where I can, I will help you.

People often say that advocacy isn’t easy. I’m not sure this is exactly what they mean when they say it. But I know that I’m grateful for the advocates who are out there every day, not complaining.

Because I know some of what it means and what it costs to be out there advocating for better lives for all of us living with diabetes. So, to finish up, let me say…

To diabetes advocates everywhere: Thank you.

Advocacy: You’re invited.

When it comes to diabetes and advocacy, it’s interesting to note that the one thing we might all have in common (other than a messed up pancreas) is that we’re all different.

Some people are dedicated to connecting others, either because it’s what they want to do, or because they see a need and want to do something about it. To that end, Cherise Shockley’s @WOCDiabetes Twitter account serves both purposes. It connects women of color living with diabetes so they have a place to share common stories, connect with one another, and feel like they’re not alone.

Some advocacy organizations want to focus on research, while others want to focus on policy and education. They all serve a purpose. But they’re definitely not all the same.

There are non-profits like Tidepool, which provides a platform for people to upload their device data and other important information, and then share that with their health care team, and also share it anonymously for research. That’s a lot for one organization.

There are #OpenAPS groups all over the country, helping people put together their own closed loop insulin delivery, even before any industry-developed options are even approved by the U.S. Food and Drug Administration. And non-profits like Bigfoot are using their talents to develop solutions that could make our lives even better. Where would we be without the inspired leadership these groups provide?

There are individuals who participate in clinical trials, sometimes multiple clinical trials, who often thanklessly help advance research into treatments, drugs, and devices designed to make our lives better. You’d be hard pressed to find a more noble endeavor.

And there are still thousands of us out there blogging, podcasting, and using other social media to tell our stories and the stories of others living with and affected by diabetes. The result of all this output of storytelling is increased access to information, viewpoints directly from the patient, and connecting others who are living the same kind of existence.

Where am I going with this? I want you to know that there are many different types of advocates and advocacy happening in the diabetes world today. And certainly, you can be a part of it.

On a personal level, I’ve always participated in things that I feel meet one (or more) of three criteria:
1) It’s interesting to me
2) I’m good at it
3) I am actually allowed to participate

That criteria has kept me from participating in the JDRF Ride for a Cure events (not good at fundraising), and some clinical trials (didn’t meet the criteria, so not allowed to participate). But it does mean that I’ve been able to attend and report on FDA public workshops (interesting to me), and serve as a part-time moderator of the Wednesday night DSMA Twitter chats (I’m good at it and allowed to participate).

Wherever you are in your diabetes journey, know that there are many opportunities for you to step forward and learn, connect, and volunteer. If you have even a sliver of time and a passion for doing something that could help you as much as it helps others, there is a place for you.

All of us will benefit from your participation. And I will be forever grateful for your selfless dedication.

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.

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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