Tag Archives: DPAC

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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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.

8 Questions.

You know, sometimes things roll around in your head and you just need to get them out so you can let them go. Like these eight questions:

1. Have you ever used your BG readouts to choose lottery numbers? Just me? Here’s the game:

Let the Powerball or Mega Millions jackpots get really high. Then take your BG number from either your CGM or your glucose meter throughout the day and play those numbers. Of course, you have to use just two digits, so if the number is 123 or 223, you play 23. If the number is 84 (the jackpot numbers only go up to about 60), you switch it so you play the number 48.

I’ve never won the lottery with this scheme, but if I did, wouldn’t that make a terrific story?

2. Does anyone ever think that a president who would fire his Secretary of State via tweet would actually care about anyone living with a chronic condition?

Ever?

3. Would you rather have a CGM sensor that you can stop and restart for weeks, or one that requires exactly zero fingerstick calibrations for only ten days? I think we’re going to find out the answer to that throughout the rest of 2018. At any rate, this is the way of the future, so love it or leave it, this seems to be the way we’re going.

4. After hearing the recent news about Facebook not only selling user profile information, but also the ability to access mobile device data without our consent (and don’t try to shame me for this practice by reminding me that I agreed to the terms of service when I created my account around a decade ago)… are you more reluctant to upload all your device data somewhere?

If I were going to run for president, or the senate, or if I would be up for a cabinet post, maybe. But I think my diabetes device data is pretty low on the official russian operative priority list.

5. What’s your next big focus in diabetes advocacy? Is it insulin affordability? Is it learning more about the FDA drug approval process, or finding out about the tricks pharmacy benefit managers play with formularies? There are still many avenues of diabetes advocacy we can pursue, and one amazing place to find out and take action on them all.

If you live in the USA, go to diabetespac.org and download the DPAC app. Use it to join the chorus of caring patients, caregivers, and other Americans who are taking action on these and even more issues in quick, easy steps that will have you feeling great about advocacy without spending every waking hour wondering how you’re going to squeeze it into your schedule. And one of the best things about DPAC is that they’re totally non-partisan. There’s room for everybody.

Use the easy button. Get the DPAC app.

6. If I donate to a JDRF or ADA ride or walk for someone else, but don’t actually participate in any of them myself, am I a bad supporter of those causes?

I happily donate to others’ JDRF or ADA fundraisers. But I’ve never ridden in a JDRF ride. After doing a few ADA rides and paying all or nearly all of the minimum contribution needed to participate each time, I’ve given up on those too. I’m sure they’re still wonderful happenings, and I still have the energy to do them. But at this point, the price of admission is just too high. Right now, I’m okay with helping four or five people reach their goal of participating, instead of helping only myself. Is that wrong?

7. Is lack of appetite a sign of old age? I’m just not the foodie that I once was. I eat far less today than I’ve ever eaten as an adult. If I could eat anything right now… I don’t think I could choose anything. For the most part, I’m just eating for sustenance. I’m not losing any weight, but I’m certainly eating less.

I’m exercising more too, if that matters. But I’ve always been active anyway.

Finally…

8. What should I do on my birthday? It’s next week. It’s not a milestone birthday, so I’ll probably just go to work and come home and be grateful I can still go to work and come home.

I think winter has lasted far too long around here.
 
 
Great… now that I have that out of my head, I can go play those lottery numbers. What have you been thinking about lately?

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.

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.

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