Tag Archives: advocacy

Are you okay with this?

February 7, 2019 – 10:11 am

Monday, United Healthcare and Medtronic went one step further on their “preferred agreement” to make the Medtronic 670g the lone insulin pump choice they will approve of without a fight.

Since the U.S. Food and Drug Administration has now approved the 670g for use with patients age 7 and older, now it’s the only one you can get for anyone 7 or older unless you work with your doctor to submit forms and do things that, under other plans, you wouldn’t have to do to get a new pump.

I wish I could say it in a nicer way. I have friends working at Medtronic, and friends insured by UHC.

I don’t know antitrust law. But… the largest insurer in America linking up with the largest insulin pump maker in America to effectively shut out all other insulin pump and continuous glucose monitor competition? Is anyone, at either UHC or Medtronic, benefiting from this agreement? In what way? How much?

Everyone I’ve spoken to who has used the 670g likes it. I’ve rarely heard anything negative. But shouldn’t patients be allowed to choose what they want to wear every day anyway? If they are allowed, pending certain requirements being met, to choose a different option, why should there be an agreement in the first place?

United Healthcare is fond of saying that over 90 percent of their patients with diabetes who choose insulin pumps already choose Medtronic. That’s disingenuous, because they’re effectively forcing patients to choose the 670g anyway.

Meanwhile, Medtronic has a goal of dominating the market. Until these United Healthcare agreements came into play, I believed it was because they were convinced they had a best-in-class product.

If you believe you have a best-in-class product, why work so hard to squeeze off opportunity for your competitors? It’s clear to see the detrimental effect this will have to Tandem and Dexcom, as well as any new entities working on closed loop solutions here in the USA and around the world.

There is more money to be made on pumps and CGMs in the United States than anywhere else. Medtronic seems to be doing its best to get the most of that market for themselves. Not through competition, but rather by stifling it.

United Healthcare is getting its own benefits from whatever it gets from Medtronic, the ability to streamline paperwork and approvals for 90 percent of pump and CGM patients, and the framework for similar agreements affecting patients living with other conditions.

Do you feel like this is unfair? Do you feel People With Diabetes should be able to freely choose to use any device that works best for them?
 
 
Send your e-mail to United Healthcare telling them this is wrong
 
 
Thanks to JDRF and their #Coverage2Control initiative for the link.

If you’re a person living with diabetes, or a person caring for someone living with diabetes, there is absolutely no good reason for a decision like this to be allowed to go forward without a fight.

By StephenS | Posted in Advocacy | Also tagged , , , | Comments (1)

My voice is just the right size.

November 19, 2018 – 2:49 pm

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.

By StephenS | Posted in Advocacy | Also tagged , | Comments (3)

Advocating with DPAC Champions

October 5, 2018 – 10:11 am

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.

By StephenS | Posted in Advocacy | Also tagged , , | Comments (7)

Your Government (and the ADA) at Work

September 25, 2018 – 10:11 am

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.

By StephenS | Posted in Advocacy | Also tagged , | Comments (2)

Advocacy Works.

June 19, 2018 – 10:11 am

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.

By StephenS | Posted in Advocacy | Also tagged , , , , | Comments (1)
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