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.

October 5, 2018 – 10:11 am Categories: Advocacy | Comments (7)

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Your Government at Work (Part 2). Let’s build a community!

This is a fairly short post (for me, anyway).

If you didn’t see my post on Facebook about this earlier, I invite you to check it out now. It’s from the Center for Devices and Radiological Health (CDRH) at the U.S. Food and Drug Administration (FDA).

CLICK HERE TO FIND OUT MORE

CDRH is the group that looks at things like insulin pumps, CGMs, and artificial pancreas systems. I think the focus of this initiative is to help foster collaboration when it comes to design and improvement of devices that help us manage our diabetes (and other conditions, but since this is a diabetes blog, that’s where my focus is).

I don’t think that CDRH and FDA are saying that they’re building a community… I thiink they’re saying they’re interested in helping communities build themselves, and listening to those communities when it comes to device development, submission, and approval. How great is that?

The best part is, you can be involved. I wish I had a dollar for every time someone said to me, “I’d like to be in on something like that, but I never get the chance”.

Well, here’s your chance.

Here’s the first paragraph of the notice from CDRH, which says a lot:

One of the Center for Devices and Radiological Health’s (CDRH’s) strategic priorities for 2018-2020 is the creation of collaborative communities to bring together medical device stakeholders to achieve common outcomes, solve shared challenges, and leverage collective opportunities. CDRH believes collaborative communities can contribute to improvements in areas affecting U.S. patients and healthcare. We encourage interested stakeholders to learn more about collaborative communities and review the toolkit, which provides a collection of helpful ideas to foster strong collaborative communities that are well-prepared to take on healthcare challenges.

CLICK HERE – GET INVOLVED

If you read here often, you understand how much I believe in community-based approaches to challenges everywhere. And how much I believe in all of us being involved in said communities.

So let me ask you… why not you?

Enjoy the rest of your week.

September 27, 2018 – 12:25 pm Categories: Diabetes | Comments (1)

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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.

September 25, 2018 – 10:11 am Categories: Advocacy | Comments (2)

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8 Things: Fall Recipes

Autumn begins on Saturday here in North America. That means lots of leaves falling from the trees, Halloween costumes and decorations in nearly every store, and recipes to warm our hearts as the days grow colder.

With that last part in mind, here are 8 Fall recipes I’m looking forward to enjoying in the coming months. Click on the links for the recipes:

1. Cincinnati Chili— it’s the main dish at our Halloween party every year, and a staple in my household, wherever my household has been, for over 50 years. This is one where the vegetarian version is just about as good as the meaty version, its unique blend of spices making your house smell great and making your neighbors’ mouths water.

2. Maple Roasted Acorn Squash— I am most definitely not a squash lover, either in sport or in vegetable form. But this recipe, which I took out of Diabetes Forecast magazine, changed my mind about squash entirely. If you replace the maple syrup with a touch of honey, it’s just as good or better.

3. Potato Leek Soup— here’s a super easy recipe for quick potato leek soup, taken from Jacque Pepin’s Fast Food My Way. A quick lunch or dinner option, it really hits the spot. Bolus appropriately. Note: recipe starts at around the 4:15 mark in the video.

4. Crab Dip— crab is something that I never enjoyed in my life before moving to this part of the world 24 years ago. It’s also something we don’t get a lot of here, because it’s pretty expensive. But once or twice a year, usually around the holidays, I’ll get out my crab dip recipe and give it a go. It’s worth having to bolus for the Italian bread that goes so well with it. Note: I like the second recipe on this page (Crab Dip Delight) best.

5. Flatbread Pizza— okay, flatbread pizza isn’t exclusively a Fall recipe, but it’s a great dinner because a) It’s cheap; b) It’s versatile; and c) It’s delicious with LaRosa’s pizza sauce. My favorite features green onion, mushroom, and bacon, topped with smoked mozzarella. What’s not to like?

6. Roasted Turkey Thighs— confession: I really don’t like turkey that much. But this recipe was a winner from the word Go, and if there’s a dish that says Autumn more than any other, this might be it.

7. Kicked-Up Ramen— Throw that stupid “flavor pouch” away… you don’t need it. Instead, use a little of this and a little of that to satisfy your own individual palate, and you’ll keep coming back to this recipe.

8. Trader Joe’s Pumpkin Ice Cream— okay, this isn’t a recipe, and to be honest, it’s not something I’d enjoy year round. But a couple times during the Fall, I’ll pick up a quart of TJ’s pumpkin ice cream, which really tastes more ginger-and-nutmeg-snappy than anything else. Regardless of what the label says and what it tastes like, it’s still a nice dessert, when I have dessert this time of year.
 
 
Those are 8 culinary dishes I like to enjoy as the leaves fall in Autumn. What are yours?

September 20, 2018 – 11:10 am Categories: Recipes! | Comments (2)

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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.

September 18, 2018 – 2:31 pm Categories: Advocacy | Comments (2)

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