Category Archives: Advocacy

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.

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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.

Candid talk on drug pricing.

When you read stories about the high cost of prescription drugs, including insulin, the initial reaction is to wonder how companies can be so heartless when it comes to patients living with chronic conditions who need those drugs.

Though we wonder why, our questions are generally rhetorical in nature. Because we know why. The dichotomy comes down to this: patients want, and often need, to pay as little as possible for drugs that will keep them alive. Companies, on the other hand, will do just about anything to make the next quarterly earnings report look good. When you’re looking at it from either perspective, you can understand each reaction, right?

I can understand it, but I don’t have to agree with it. I say, let’s change the perspective.

I might feel differently if drug makers and pharmacy benefit managers hadn’t already made massive profits at our expense. They were making a profit on my insulin twenty years ago, and they’re making a profit on it today. Same insulin. Billions in revenue.

Twenty years ago, I could afford to get the insulin I needed without much of a hassle. Today, if I lose my job, I might not be able to afford it at all. I’m through with asking, “How did we get here?”.

I say, let’s help companies, especially Pharmacy Benefit Managers, to operate with empathy for the people who have helped pump up those quarterly numbers for a couple of decades. Not because we’ve been such great customers over the years, but because I still believe that people matter more than an executive’s bonus.

I say, let’s put a restriction on how long a company can manipulate drug patent protection for their own benefit. And let’s make it a short restriction. Insulin would still be a profitable enterprise without patent protection, so I don’t see the need for this anymore.

I say, let’s eliminate the idea of drug formulary lists for PBMs. If it’s a drug, approved by the FDA, it should be covered. Period. At the same price as all the other drugs. If we can’t do that, let’s at least ensure that discounts and rebates negotiated by PBMs are passed along to patients enrolled in the plan. Period. Every penny. No exceptions.

You can give me a hundred reasons why none of these ideas would work, and I can’t argue with you on that. But I keep coming back to empathy, and the notion that the way things have always been is not the way things always have to be.

To some, the idea of changing the design of prescription drug coverage and payment seems insane. But in the developed world, that’s only true in the USA. Nearly every other industrialized nation on the planet does a better job of helping patients gain affordable access to drugs.

What’s the holdup, America? It’s time to change the perspective.

8 Things: Why I still love to write.

Happy to say I’m on vacation for about the next ten days. I don’t know how much new stuff you’ll see here, but look for me on social media next weekend when #AADE18 comes to my city. I should have a lot to talk about then. In the meantime…

I’ve heard some talk recently about how blogging is falling out of favor these days, and how diabetes blogging in particular may have already seen its heyday.

I don’t know if that’s true. I’m always the last to know things anyway, and while you probably aren’t reading as many diabetes blogs as you once were, there are still reasons for it to continue.

So while I have a moment, here are 8 reasons why I am still proud to say that I’m a diabetes blogger:

1. I believe in telling my story. Oh sure, you can get that “me too” moment from someone’s tweet or Facebook GIF, but a meme doesn’t quite tell the entire story, even if it gets a lot of notice in the moment.

How could I tell about nearly dying on the operating table last year in 280 characters or less? What about my trip to Europe and the diabetes management required to make it happen? Those are things that require more elaboration.

2. I believe in sharing information. Whether talking about a workshop or conference I’ve attended, or letting you know about a chance for you to attend an upcoming workshop or conference, I still feel a responsibility to share what I learn.

The informational posts I publish, like this week’s information on DPPs, DSMEs, and DSMPs, are the ones I really hope you’ll read. Knowledge is still power, and that’s why it’s important for all of us to stay informed. I like trying to help with that.

3. I don’t really care if you’re still reading or not. There, I said it. It’s not that I’m not grateful you’re reading; in fact, I’m exceptionally grateful you’re reading. But if I let page views dictate what I talked about, I probably would have become a basket case long ago. And my page views probably wouldn’t be much different than they are today.

This is one that’s hard to understand unless you’ve accrued a certain amount of mileage in life. But I can tell you that producing something meaningful, whether it’s meaningful to me or to you, is enough for me.

4. I don’t know how long it will last. I’ve often said that I can’t keep writing here forever. I won’t… believe that.

But I don’t know yet when the end will come. I know when it does, I will miss it terribly. So I look forward to continuing to write as long as I can.

5. Despite that, I don’t fear change. It’s true that the only constant in our lives is change. However my online advocacy changes in the coming years, it’s okay as long as it’s productive.

And I like to think that once I’m no longer blogging, it will be because there are many other worthy writers to take my place.

6. More than ever, patients deserve a voice. This should really be at the top of the list.

Patients are getting more of a voice, that’s for sure. But there are so many individuals, be they patients themselves, healthcare professionals, or the general public who still haven’t heard our stories. They don’t know anything about the power of the patient voice. Here’s hoping we can continue to show them what it’s all about.

7. There’s always another story waiting to be told. I don’t know what the story is, or where I’ll find it. But the thrill of finding that story and delivering on the promise of sharing it inspires me every day.

8. It makes me feel good. And connected. And useful. Every time I click “Publish”, I get a dopamine rush to beat the band. It’s good for my mental well-being, on top of all of the other good (I hope) it does. Even when I’m on vacation.
 
 
Here’s something that’s true for everyone writing a blog, regardless of the subject matter: Being free to express our thoughts, share information, and connect with others gives us a sense of purpose, and a sense of belonging. There are many reasons to say goodbye to blogging… but at least 8 that leave me feeling happy about continuing. For now. 😉

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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