Monthly Archives: August 2016

It’s time for our government to protect its citizens.

August 26, 2016 – 9:08 am

I’m so mad I could spit.

I watched an interview yesterday on CNBC with the CEO of Mylan, which is coming under fire for enormous price hikes on their Epipen product, which helps people suffering severe allergic reactions stay alive. Now it’s pay up or stay alive. Sound familiar?

CLICK HERE for the interview, then come back.

Well, it looks like common sense isn’t lacking for just male CEOs in this country. At first glance, you might think this is a woman who doesn’t get it. But she gets it, far more than she tries to show in this interview. Only what she gets is different from what the rest of us who depend on a drug to stay alive gets.

Don’t give me platitudes about how the entire healthcare system is failing us without giving us detailed examples of how your company is not part of the problem. And announcing a “rebate program” for patients doesn’t count. It’s a way to hold people at arm’s length, making them fill out more paperwork, make more phone calls, dangling the carrot just out of reach. It’s also probably a tax write-off for you, though probably not as big a tax write-off as moving your “headquarters” out of the USA was. Believe me, there are MANY people who are more frustrated by this than you are. “Facts are inconvenient to headlines”? Really?

This goes back to my post from last October. This CEO’s constant misdirection on the topic of drug overpricing shows that Mylan doesn’t really care if someone dies because they can’t afford an Epipen. Why should they care? If there are ten patients with severe allergies in a room, and one of them dies because they can’t afford an Epipen, what does that mean? If I’m Mylan, it means I have to ship less product, but since I’ve raised the price of my product 600 percent in the past few years, I’m still making more money than when I had ten patients paying the lower price. Win-win!

“Pharmacy Benefit Managers” (yes, I put quotes around that faux title) that work for prescription providers like CVS/Caremark and Express Scripts are to blame too. They’re trying to get as much money as they can, and they’re pretty successful, even if no one can think of a single reason why their jobs are needed in the first place.

Recently, Slate.com has weighed in on drug overpricing to note that this kind of practice is costing insulin-dependent diabetes patients dearly too. Welcome to the party, Slate… where have you been?

So the questions are the same as before. What can be done? How do we get Congress to act? How do we get companies to stop forcing patients to choose between rent or complications, keeping the lights on versus dying?

It is abundantly clear that companies don’t care about anything except revenue. They will not budge, nor will they stop this unethical and unpatriotic practice until they are forced to do so.

I just can’t go into another post about what the diabetes community needs to do to reverse this setback for patients. We’re all tired of this, we’ve seen more than enough examples of excessive greed, and it’s starting to wear on us. But I can tell you what is needed:

The United States Government must get involved to protect patients reliant on drugs to stay alive.

This means the three branches of our federal government… the Legislative, the Executive, and the Judicial, must work together to determine and support policy and pricing that protects patients from seeing these kinds of increases in the future. Our government actually does have the power to do something about this, and if they’re unwilling to act, they’re as much to blame for needless complications and deaths as the drug companies and the prescription providers.

Here are a couple of ideas. I’m just spitballing here, but what the heck, it’s my blog. Let me know what you think:

Limit price increases. Simply put, enact legislation that limits how much of an increase can be implemented for drugs. All drugs. Period. With no exceptions. This is the one item where people might cry “socialism”, to which I say no one ever said anything about no profits for companies. Mylan was already making a huge profit on Epipen before their recent increases. Lilly was already making a huge profit on Humalog. Novo was already making a huge profit on Novolog. And Express Scripts was already making a huge profit on all three.

Are your company’s headquarters outside of the USA? Then the U.S. Government should set the price. Mylan (and many, many other companies, including Medtronic) have gone through a process known as “inversion”, where most or all of a company’s execs and offices remain in the USA, but all their paperwork lists them in a lower tax country, like Ireland, for example. Fine. You want to do that? The federal government should now be allowed to set the price on all medications you sell inside our borders. Actually, let’s amend that to say the Feds should set the price on all items sold to patients in my country. You were making a profit already. Enough of a profit to buy a company in another country and then make that company’s “headquarters” your own so you could skip out on paying U.S. taxes. I don’t see why we can’t say, pay taxes in our country or you have no voice on pricing. American capitalism should only extend to American companies. I know, you’re probably worried that they wouldn’t release new drugs in the USA. Trust me: they’re not going to walk away from the biggest economy in the world, regardless of what they say.

Show some guts elected officials. It’s pretty much down to you now. You are going to have to step up and protect patients. Choose to support us through your words and your actions. This is an issue that affects every registered voter in America.

Show us you’re worth voting for. #PatientsoverProfit

By StephenS | Posted in Advocacy | Tagged , , , , | Comments (2)

Juice boxes in the middle of the night.

August 24, 2016 – 9:08 am

You know, it’s really hard to get juice from a juice box in the middle of the night.

Think about it… you have to find the juice box (usually in the dark), you have to grab the plastic straw from the side of said juice box, you have to remove the plastic wrap from around the straw, and then you have to poke the juice box with the straw in the tiiiinny little space allocated for that procedure.

That is really difficult to do at one o’clock in the morning when you’re shaking, you’re sleepy, and your vision without all of that would make it hard to see what you’re aiming at anyway.

Well, that was exactly the scenario the other night, and as you can tell, I was successful in the end. But diabetes was also successful in scaring the crap out of me.

My last bolus prior to that was about five hours earlier. Still time for the insulin to affect my blood sugar, but past its peak, I believe. Feel free to correct me if I’m wrong. My last BG check was at 10:30, right before bed. For the record, my meter read 135 mg/dL. Not high, not super low, but okay considering my basal rates do a good job of keeping me pretty steady throughout each 24 hour period.

Yet every once in a while complacency bites me in the ass, because diabetes acts different from the way it acts under 90 percent of the other circumstances I’m used to. Those are the dangerous moments. Those are the frustrating moments. Those are the critical moments when I just have to ignore everything else and concentrate my focus on doing the one or two things necessary to keep myself alive.

And make no mistake, keeping yourself alive is exactly what you’re focused on in moments like this.

Maybe the circumstances leading up to this event can help explain why my blood sugar tanked in the middle of the night. But even if they could, it’s like much of the science surrounding diabetes. There’s a link, but you have to look really hard to find it, and when you do, you find that the details are so complicated that it would be hard to remember all of it later on.

When our brains are overloaded with math, prescriptions, doctor visits, and remembering to bolus at the right time (among other things) already, it’s easy to see why most of us don’t get too invested in the causes of our hypoglycemia. It’s very complex, and each scenario could be different anyway. If there’s something that really stands out, like over-blousing or insulin stacking or not factoring in exercise, we identify it and correct it next time. Anything deeper than that, and we’re likely to lose track of it.

Solving lows like this is often like learning the engineering behind sending a rocket into space. There’s so much to know, you can’t possibly learn it all on your own. And unlike science, diabetes changes over time, so even if you learn everything behind today’s low, it might not help you with the one you experience six months from now.

I’m glad everything turned out okay in the end. I worry about those who experience the same circumstances where things don’t turn out okay.

And I still worry about what I don’t know.

By StephenS | Posted in Lows | Tagged , , | Comments (1)

Like these links, Friday style.

August 19, 2016 – 9:08 am

I’m very excited to share these links with you today. One about funding diabetes advocacy, and two about two of my Favorite People to Follow on Social Media. Here we go:
 
 
To begin with, Dexcom employees have just started up a new charitable organization called Dexcom One Step Ahead Foundation. The One Step Ahead Foundation will be funded by Dexcom employee contributions and fundraising efforts by Dexcom employees, and it aims to support grants of $10,000 to $50,000 to “…advance the missions and purposes of tax-exempt organizations that provide services and programs to people living with diabetes and their caregivers”.

I’m all for funding diabetes advocacy. A new infusion of funds like this can help make a real difference, so a big Friday Thank You Dexcom employees!

There’s a short window for this year’s grants… proposals must be submitted from August 22 through September 28. Grant awards will be announced during Diabetes Awareness Month in November. Sharpen your pencils!

To find out more or to submit your own grant proposal, you’re encouraged to contact Dr. John F. Gallagher at drjohnfgallagher@gmail.com. To read more about this generous initiative by Dexcom employees, CLICK HERE.
 
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Those of you who know me know that I live in Baltimore, but did you know that I am not the most popular or the best health blogger in my area? Not by a longshot. Molly Schreiber lives with Type 1 diabetes and Rheumatoid Arthritis, and she has a terrific blog called And Then You’re at Jax. She’s very active in both the Diabetes and RA communities online, and her blog reflects that. She’s also very nice, and she’s pretty funny at times too.

This week, Molly was featured on The Mighty website with her description of her newfound dismay over local businesses that do not have very friendly entrances.
Check this out and see what I mean.
 
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I met Mariana Gomez back in April at the Medtronic Diabetes Advocates Forum. Her friendliness, paired with her passionate advocacy on behalf of people living with diabetes in her home country of Mexico and beyond, was quite impressive, and something I won’t soon forget. Everyone over at her own blog and at EsTuDiabetes probably knows what I mean.

Mariana is a real gem. So I want to share this little piece that DiabetesMine shared on Mariana this week (and don’t forget to look for the one on Molly too!).
If you haven’t heard of Mariana yet, this is a good place to learn about her and her life with diabetes and her impact on the Diabetes Community.
 
 
That’s all for now… but I can’t leave without linking to my own blog, reminding you to nominate your favorite Champion Athlete With Diabetes (even if it’s you) so they can put their very own medal around their neck. Why should the Olympic athletes have all the fun?

By StephenS | Posted in Like these links | Tagged , , , , , , | Comments (1)

Knowledge, respect, empathy.

August 15, 2016 – 9:08 am

I received a wonderful bit of feedback from a colleague at work this week:

”Steve, you did an incredible job facilitating the Millennial panel. You have a knack for being able to ask difficult questions and getting people to open up. Your presence had a calming effect on the group and you exemplified active listening when you rephrased our responses to gain clarification. I hope you take the opportunity to do more facilitation because you’re great at it.”

Little did this person know…

Since I don’t share much of my work in the diabetes community with the people I work with, there’s no way for this person to know that I actually have recent experience facilitating. But this feedback helped underscore the importance of conversation, and the equal, if not exceeding, importance of listening.

A lot has been written about the importance of communicating with your medical team, how to share goals and concerns with them, and conversely, how we would like to be talked to by our medical team. In fact, we talked about this a lot last Thursday during the DSMA Live event in San Diego, which was live via Periscope with the #DSMA Twitter chat going on simultaneously during the American Association of Diabetes Educators conference. This was the first time so many CDEs were involved in conversation with People With Diabetes at the same time, in the same space. We talked about a lot, and I think we all learned a lot too.

I think there are specific themes that translate to our communications with doctors, Certified Diabetes Educators, and other healthcare professionals we see on a constant basis. It’s important to get our points across, and it’s important to listen to and lean on the knowledge and support of caring, dynamic healthcare professionals.

Patients, let’s not forget– the conversation works both ways: just because I live with diabetes doesn’t mean I have the market cornered on sorrow. Maybe my endo has a family member that’s causing a great deal of stress in their lives. Maybe a CDE just got yelled at by another patient. Maybe an ophthalmologist is dealing with the chronic pain that afflicts people living with arthritis. As much as we try to shake things off (being human and all), all of these and more can affect conversations.

And in some cases, our HCPs need to up their game when it comes to reacting to patients. Sometimes we need advice. Sometimes we need changes to our therapies that we’ve been unable to figure out because we’re so close to our diabetes management. Sometimes we need to convey our fears without being judged that we’re not “in control” of our diabetes. Whatever the case is, the fact is, we need something or we wouldn’t be there.

So what can we do? How do we make the conversations between healthcare professionals and patients better, more meaningful, more impactful? Much of it comes down to knowledge, respect, and empathy. And remember, these ideas go both ways.

We need to bring our knowledge to the table, not be afraid to display it when necessary, and not be afraid to admit when we don’t know something. I mention that last part because in the past, I have been more likely than others to gloss over something I don’t know. Admitting that you don’t know something can be difficult because it can make you feel vulnerable. Getting over the feeling of vulnerability can actually be quite freeing. One less thing to worry about. Getting over it can be helped along through respect from the other side of the conversation.

Respect is one of the things that is hardest to get right. On the surface, you wouldn’t think this is true, but respect can often be something we can easily hold back on (for “evidence of worthiness”, for example), and it’s something that we can lose and lose track of quickly without really recognizing that we’ve done so.

But respect for the other person in your conversation really allows for someone to be vulnerable. It allows some space, some comfortable air, for a patient to state that they don’t know what a dual wave bolus is, or that their diabetes burnout is really scaring them. It gives a doctor the room to say that they don’t know anything about inhalable insulin, but they will check it out to see how you can safely fit it into your diabetes management.

Empathy is something that, as I’ve stated before, People With Diabetes possess in abundance. But, and I hate to say this, but sometimes it seems like our empathy only extends to the others in our community. We have empathy in abundance. I think we have enough to spread around to our HCPs too, if we’re not doing so already.

Healthcare professionals can show empathy simply by considering us as human beings first, and as patients second. Though it’s a huge part of our lives, we are more than our diabetes. Those aren’t words that haven’t been written before. But maybe someone hasn’t read them before? Maybe there’s someone who has forgotten them? I don’t know. I do know that becoming empathetically invested in someone else’s life and goals and hopes and aspirations does not cost one single dime. And usually, the rewards are more than worth the effort.

I guess what I’m saying is, you can be a great facilitator too. When you apply the principles of knowledge, respect, and empathy to your online and offline conversations with others, whoever those others are, your conversations mean so much more, allowing room for honesty and growth for the people affected by those conversations. And doing so leaves little room left for judgement. Remember:

I support you… no conditions.

By StephenS | Posted in Diabetes | Tagged , | Comments (2)

Let’s hold our own Gold Medal Ceremony.

August 9, 2016 – 9:08 am

It’s Summer Olympics time! And what does everyone at the Olympics want?
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That’s right… we all want our very own gold medal.

Guess what? If you’re a Person With Diabetes, or you know someone living with diabetes, and said PWD is staying active, achieving athletic goals, I have a gold(colored) medal to award them.

Let’s face it: right now is the time when most of us are most active. Have you been running a 5k? Running every week? Walking every day? Getting on your bike and putting pavement behind you?

You don’t have to be like the NASCAR driver, or the member of the USA Women’s Curling team who have been awarded medals. You can be someone who takes a boxing class, is a ballroom dancer, or a runner, or a kid who loves to play basketball. Or, like a recent winner, you run a half marathon in a tutu. Regardless of your sport, whatever your level of skill, there is a medal waiting for you.

Why should the athletes at the Olympics be the only ones getting a medal? You’ve worked hard… friends or family members living with diabetes have worked hard. We all know it’s not easy to stay on a training schedule and deal with insulin, low blood sugar, high blood sugar, what to eat, what not to eat, staying on schedule, working hard. Heck, all of that is practically an Olympic event in itself. The kind of event that no one wants to compete in. But People With Diabetes compete and win in that event every day.
 
 
Here’s how to win your Champion Athletes With Diabetes medal:

1. The athlete receiving the award must be living with diabetes.

2. The athletic event must have taken place in the last six months. For now, we’re going with a pretty loose interpretation of the word “event”. If you feel you’ve accomplished something important to you, that’s an event.

3. Send me an e-mail at champswithdiabetes@gmail.com. Tell me your name, name of the athlete (it’s okay if it’s you), and your address (gotta know where to send the medal). Most important, tell me what athletic goal was accomplished, and when. Extra points if you tell me how you felt accomplishing the goal. Full disclosure: I reserve the right to use your testimonial here, on Twitter, and on Facebook. I will not use your name if you don’t want me to. As always, I will never share private information.

4. When you receive your medal, it would be great if you post a photo of it around the athlete’s neck. You can send a Tweet to @ChampsWithD (hashtag: #champdathletes) or post it on the Champion Athletes With Diabetes Facebook Page.
 
 
We’ve awarded medals to over 80 athletes in 20-plus states and territories, 14 or 15 countries, on five continents. Let’s not let the Olympic athletes have all the fun.

Let’s hold our own Gold Medal Ceremony. Write me today.

By StephenS | Posted in Athletes With Diabetes | Tagged , , | Comments (1)