Category Archives: Advocacy

Are you okay with this?

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.

Welcome to February #SpareaRose

Welcome to February. Welcome to Spare a Rose, Save a Child.

In over 50 countries around the world, children diagnosed with diabetes are in serious need of insulin… meters and test strips… basic diabetes education. In the countries they live in, money and resources are also hard to come by.

That’s where the International Diabetes Federation’s Life for a Child program steps in. Thanks to your life-sustaining donation to the Spare a Rose, Save a Child campaign, these children have a chance.

Now until Valentine’s Day, February 14, do the simple math: the value of one rose you might buy for a loved one (about $5 USD) can help to save the life of a child for an entire month. That’s a very measurable way to consider the impact of your important donation.

What your donation means is that in places where diabetes is a critical diagnosis for a child, kids are provided with insulin; meters, test strips, and lancets; diabetes education; and even diabetes training for local medical staff.

Click on the giving link and donate today:
LFACInternational.org/SpareaRose

Don’t forget to share the giving link with your friends at work, at school, and on social media too.

Spare one rose this Valentine’s Day, save a life of a deserving child for an entire month. Spare a dozen roses and save a life for an entire year.

There are a lot of things we can’t do. We can’t cure this disease all by ourselves. What we can do, one by one, is make a contribution that will make all the difference in the world for a child who might face quite a bleak future without our intervention.

Spare a Rose this February. Save a life. And… Thank You.

Why not YOU?

In case you don’t follow me anywhere else on social media, or in case these might have fallen off your radar somehow, here’s one more reminder about two important gatherings coming up this Spring.

Many of you are interested in amplifying your advocacy voices, and rightfully so. In the interest of leaving no vocal stone unturned, I emplore you to apply to each of these.

Just in case you’re wondering, I don’t get anything out of encouraging you to apply… I only get more competition from you, and you get my thanks for using your platform for good.

Both of these gatherings are near and dear to my heart, and both have deadlines that are fast approaching.
 
 
Friday, February 1 is the deadline to apply to attend HealtheVoices, a unique conference featuring over 100 attendees living with 40 or more chronic conditions. You get a chance to learn about each other, and learn what others are doing to impact their communities.

It’s where I got the inspiration to begin podcasting almost four years ago. It’s also where I’ve made friends and allies that I never would have made anywhere else.

Here’s the link to apply for HealtheVoices 2019, April 12 to April 14th in Dallas, Texas.

To read about my experience at HealtheVoices last year, CLICK HERE.
 
 
You have an additional week, until February 8th, to apply to attend the next DPAC Policy Training Meeting in Washington, D.C.

You know how DPAC (Diabetes Patient Advocacy Coalition) makes it easy to advocate on important diabetes issues through their app? This is all of that, in person.

You’ll learn how to effectively bring diabetes to the forefront in front of elected officials and policy makers. On the final day, you’ll use what you’ve learned as we go to Capitol Hill and state our case in the halls of Congress.

It all happens April 30th to May 2. Your passion is needed! Remember to apply by Friday, February 8th.

Here’s the link to apply for the next DPAC Policy Training Meeting. Find out more and apply… your voice is important.

To read about my experience at the last DPAC Policy Training Meeting, CLICK HERE
 
 
I encounter people all the time who never get the chance to have experiences like this. I also speak to people who believe they’re not big enough or important enough to do these things.

But hey, who am I? I’m not any bigger, better, or badder than you are. Why not you? These are two fabulous opportunities open to anyone living with or affected by any type of diabetes, and I hope you take advantage of the chance to attend. If you have questions, e-mail me. Good luck!

Why are PBMs escaping scrutiny?

Well, goody… we get to ponder the implications of another increase in the price of insulin here in the USA. Sanofi and Novo Nordisk have raised the prices of most of their insulins somewhere between 4.4 and 5.2 percent.

As you might expect, this has caused a lot of consternation among those living with and affected by diabetes. As I’ve mentioned here previously, the price of insulin (often, the same insulin) has tripled in the past 15 or 16 years here. People who weren’t previously pissed off are now pissed off, and many who are already pissed off are about to lose it altogether.

I get it. But before you sharpen your pitchfork and start to light a torch (even though no one really ever does those things anymore), let’s step back and consider the whole pricing picture.

Because there’s a lot more than meets the eye when it comes to prescription drugs in America.

Let me ask you: among patients, providers, insulin makers, health insurers, and pharmacy benefit managers, who has never shared anything about what they pay and what they pocket for insulin? Which pane in this insulin window has been the least transparent?

It’s the pharmacy benefit manager.

CVS Health, Express Scripts, and OptumRx are PBMs who, combined, manage prescriptions for 180 million or so in the United States. About 75 percent of the market. They set formularies, those pesky lists of drugs that you can get with a lower co-pay, as opposed to the drug that might actually work best for you.

They help to set prices, playing one insulin maker against another in an effort to try and maximize profit. And they’re probably loving the fact that a lot of the outrage on insulin pricing has been focused on the actual insulin makers themselves.

Yet we don’t know how much they earn off of every vial of insulin they move through their massive warehouses. We don’t know if rebates are involved for insurers, and if those rebates are being applied to lower overall costs for participants in their plans. Or if the rebates are being used to mask an arbitrarily high shadow price for the drug I need to live.

Because pharmacy benefit managers are not telling us anything.

We do know that 75 dollars (USD) a month is about the dividing line for most Type 1 patients… the difference between insulin affordability and insulin rationing to lower costs. That means that an increasing number of Americans, insurance or no insurance, are having to make the hard choice between a life-continuing medication and not paying bills or keeping food on the table.

When did this become okay? This is not okay!

Believe me, I share your outrage when it comes to the crazy spike in insulin prices. Just remember to save some vitriol for the prescription providers too.

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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