Tag Archives: advocacy

My voice is just the right size.

You may have noticed that this is still Diabetes Awareness Month. You may have also noticed that I haven’t exactly been blowing up social media with post after diabetes post.

There are a number of reasons for that.

I’m beginning to wind down a very busy year. I do have a few extra days off the next six weeks. But I’ve already spent more than half of my days off from work this year actually working on diabetes advocacy, and I don’t exactly want to spend a lot of my remaining days off working on something that could easily seem like a second job if I let it.

Plus, there are more than enough voices, loud voices, shouting into the air all through November. I don’t mind that at all. Also, I don’t feel the need to compete with those voices. In addition, I don’t feel the need to raise my voice and make it louder just because it’s November.

Part of my success, and part of my sanity, involves remembering that my voice is just the right size already. I’ll make it louder when necessary. But I tend to see “necessary” on a moment-by-moment basis, rather than as a scheduled month-long advocacy extravaganza.

So, at the end of a five day weekend, I can look back at about a half dozen fix-it projects completed around the house. A little extra time in the kitchen cooking. A whole lot of time listening to music. You know… the boring stuff.

Here’s the thing: the boring stuff is important to my diabetes, and to my overall health too. I like being useful, getting my hands dirty now and then. I like to be creative in the kitchen. It’s also important to take the time to be still, allowing myself to consider some of the things I haven’t paid much attention to in the past several months.

So there you have it… my “I’m glad for Diabetes Awareness Month, but I’m also over it” post. The truth is, we need Diabetes Awareness Month and World Diabetes Day. But we also need diabetes efforts throughout the year, in front of medical professionals, on Capitol Hill, in the classroom, in the workplace, from voices everywhere.

There’s room, and a time, for all of those voices, whatever size they may be.

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Advocating with DPAC Champions

It’s been another incredibly busy week, in the middle of an incredibly busy year. I’m through talking about it, but I just thought I would mention that as the reason why I’ve been silent here this week.

But last weekend… last weekend was full and eventful. I was fortunate enough to have been able to go to Washington, D.C. for the very first DPAC Policy Training Meeting.

Disclosure: DPAC paid for my hotel and parking for this event. All opinions are owned entirely by me.

Diabetes Patient Advocacy Coalition (DPAC) held this training meeting to help about 30 of us advocates learn about important issues that many of us have been discussing, and to learn how to more effectively advocate our positions before lawmakers. Saturday and Sunday were about learning, and Monday was about going to Capitol Hill and putting what we learned into action before Congressional staffers.

Saturday and Sunday were spent learning the ins and outs of why the price of insulin is getting higher and higher. We also learned about two measures before the United States Congress right now: House Resolution 5768 and Senate Bill 3366 – Expanding Access to Diabetes Self-Management Training Act of 2018.

Let’s take a look at each of these, one at a time.

Access to affordable insulin

It’s no secret that the price of insulin is skyrocketing. In fact, the cost of insulin has tripled in the past 15 years. That is not sustainable.

However, the Congressional Diabetes Caucus has requested information from a number of end points in the insulin supply chain (fancy talk for patients, medical professionals, pharma, pharmacy benefit managers). They’ve received information back, and they’ve been compiling their findings in a report, which is due to be released soon… hopefully, within the next month.

At the moment, there is no legislation before Congress which will address the price of insulin. But if we’re going to get there, we need to know where the pain points are. We’re hoping this report will shed some light on that, and that’s why we asked lawmakers to share that report the moment they get it, with their constituents and with DPAC, because there’s nothing better than transparency when it comes to something like this.

Diabetes Self-Management Training Act

Sponsored in the House by Representative Tom Reid (R-NY) and co-sponsored in the Senate by Jeanne Shaheen (D-NH) and Susan Collins (R-ME), These companion bills aim to increase access to diabetes self-management training for senior citizens who are on Medicare. This is incredibly important for a number of reasons.

Imagine living on Medicare for 10 years after retirement. We know how much diabetes technology and treatment can change in just a decade. Sometimes it’s like drinking from a fire hose. But imagine not having diabetes self-management training (or DSMT) paid for by Medicare when you need it then. Today, Medicare pays for 10 hours of training in the first year, and just 2 hours after that. This bill would change that.

Did you know that Medicare recipients can’t receive Medical Nutrition Therapy (MNT) and DSMT on the same day? So, if you’re 75, and it’s already an effort to get to the hospital where the training is conducted, but you have to go one day for MNT and another day for DSMT. Doesn’t make sense, does it? This bill would change that.

The bill would also allow for DSMT to be delivered outside of a medical professional setting… think local library or fire department meeting hall. There’s also a provision to look into expanding virtual training via telehealth or online. Both of these could be game-changers for people in rural communities like Dorchester County, Maryland, which has the highest prevalence of diabetes of any county in my state, but where many people live 30 or more miles away from a hospital.

We know that since we’re nearing the end of the 115th Congress, there’s virtually no chance of these measures passing before the end of the year. But we went and asked lawmakers to sign on as co-sponsors of the legislation so that when this comes up (as it undoubtedly will) in the 116th Congress, it will be much easier for these Congressmen and Senators to say yes.

For more on this important legislation, click HERE.

The best part of the long weekend? Going to the U.S. Capitol with my fellow DPAC Champions to advocate before Congressional staffers. My meetings with staff from the offices of Rep. John Sarbanes (D-MD), Senator Chris Van Hollen (D-MD), Senator Ben Cardin (D-MD), and Senator Patty Murray (D-WA) were productive and helpful. We didn’t get a single No on anything. A huge success.

Before I wrap up, a few Thank Yous:

Thanks to Christel Marchand Aprigliano and Leyla Mansour-Cole from DPAC for organizing the weekend and doing the cat herding so the DPAC Champions would be in the best position possible to fulfill our mission.

Thanks to Logan Hoover, Legislative Assistant for Representative Tom Reid (R-NY), who is Chair of the Congressional Diabetes Caucus. He spent time with us on Sunday to give us valuable information on how to share our stories and make an impact with the people we met on Monday.

Thank you to Jasmine Gonzalvo for being an amazing supporter and educator over the weekend, on the importance of both of these initiatives. And to Stewart Perry and George Huntley for doing an amazing job of explaining how “market forces” (my quotation marks), rather than patient empathy, have impacted the price of insulin in the USA.

Finally, thanks to our friends at the Endocrine Society and Lions Club International for partnering with us in this effort. It takes a village, and I’m glad to have these people on my block.
 
 
It’s easy to think of this event as a culmination of lots of effort on the part of DPAC, its Board of Directors, its Patient Advisory Board, and DPAC Champions. I tend to think of this as a beginning.

There was a construction site across from our hotel this weekend, with a big wall surrounding it, and messages on the wall. When I saw two of the messages, I knew what this weekend meant for me.
It took all of us from a “What if?”…

…to a “Why not?”

Whatever the message, I’m confident that the progress we’re making will help to yield positive results for People With Diabetes in the United States.

Your Government (and the ADA) at Work

If I may, I’d like to spend the next couple of blog posts talking about recent announcements from U.S. government organizations, that have a significant impact on People With Diabetes. A good impact.

The first announcement is from the American Diabetes Association (not a government organization), which announced that the U.S. Department of Transportation, Federal Motor Carrier Safety Administration (FMCSA), has announced it has changed its rules. For the first time ever, People With Diabetes who inject insulin can be certified to drive commercial vehicles.

For the past 15 years or so, Drivers on Insulin (that should be on a T-shirt) had to get an exemption to be certified to drive tractor trailers, buses, and construction vehicles. Prior to 2003, if you were using insulin to manage your diabetes, you could not be certified to drive under any circumstances.

Today, there are still requirements a driver has to meet, but there is no special exemption to get, and the rules are much more reasonable. I invite you to look at the filing in the Federal Register, especially parts J, K, and L, to see the kind of discussions that took place and the final decisions on what constitutes a qualified driver with diabetes and how the FMCSA took everyone’s concerns into consideration when making a final decision.

Kudos to the American Diabetes Association for helping to push this over the finish line.

You know, I’ve only been writing here for 6 1/2 years, but I don’t think the language used in this filing is something that would have even been considered back then. That’s how fast things are moving in our world of advocacy.

In today’s world, #LanguageMatters, and this is living proof.

Personally, I always had an idea in the back of my mind that once I retired, I would get a part-time job as one of those guys at the airport who drove people from their parking lot to the terminal, and back again. I’ve always loved travel, and this would somehow bring me closer to it.

It’s not necessarily what I’d look forward to in my golden years, but it’s nice to know that now, if I wanted to, I could do it.

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.

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.

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