8 Hidden costs of diabetes.

Everybody knows diabetes is expensive. We spend a lot of money on insulin, syringes, infusion sets, sensors, and more.
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But there are a lot of hidden costs in diabetes. I found at least eight things that my doctor never told me about at diagnosis, and they cost me a lot.
 
 
1. Juice, candy, glucose tabs, and other “in case of lows” supplies.
About every other week, I head to the grocery store for some juice. I also need to make sure I don’t have a shortage of candy for those times when my refrigerator isn’t so close. Supplies in the bedroom in case of overnight lows, juice boxes and crackers in my desk drawer at work, hard candy in my truck. I’ve lost track of how much I’ve spent over the years on stuff like that.

2. Extra doctor visits.
Almost all of us visit our endocrinologist every 90 days or so. But what about all of those visits with our primary doc, even if it’s just when we’re “real people sick”? A podiatrist? An ophthalmologist? A dietician? A Certified Diabetes Educator? My insurance plan’s plan year is only a few months old, but I already have a stack of receipts for co-pays to the other healthcare professionals I see throughout the year. And while we’re at it:

3. Time.
Ever consider the time you spend on your diabetes? Just all those HCP visits take up a lot of time we’d like to spend on other pursuits. Add in blood sugar checks, set changes, and the myriad other tasks we perform on a regular basis, and I figure diabetes is gonna owe me a few extra years at the end. It’s a big, giant cost that bothers me more than I can tell you.

4. Education.
A lot of this is of my own doing, but honestly, I want to know more about diabetes, and more about advances in research and development on drugs, devices, and the mental cost of living with this disease. Often, that means spending money so I can get to where the information is being given. Of course, there is much to be learned via the internet, which is what I’m trying to do when I can’t get away to a conference. But a portion of my budget is now permanently earmarked for diabetes travel.

5. More time.
This is the good part of time spent on my diabetes. That includes spending Wednesday nights on Twitter, communing with my D-homies while doing the question and answer thing during #DSMA. When I’m lucky enough to see my diabetes friends in person, I love just being in the moment and soaking up all the goodness. Life ain’t all bad, right? But then there’s:

6. Extra costs for extra conditions.
Many of us living with diabetes get cursed a second or third time over with another condition like Celiac or high blood pressure or, in my case, an annoying skin condition that I’ve been told will also never go away. My extra isn’t anything that anyone needs to worry about, but it still comes with a cost, and even my dermatologist (another HCP cost) says it might be related to a compromised immune system. Thanks diabetes.

7. FItness.
I’m a believer in trying to stay as fit as I can. I don’t look like it, but I still exercise on a regular basis. Because it helps my body use insulin more efficiently, and because I feel better when I exercise. But it doesn’t come cheap. I will say this though: the cost for my road bike, for my spin bike, for workout wear and even my gym membership has been worth Every.Single.Penny.

8. Worries.
This could come under Time, or More Time, but let’s be honest. This deserves its own category. From fears of a future low, and fears of what a previous low has done to our brain cells, to fears of complications that come with years of diabetes unknowns, the cost of this chronic condition goes far beyond anything anyone should consider reasonable.
 
 
This list doesn’t include the money spent supporting my friends and the great causes they work tirelessly for. And it doesn’t count the money I spend on special things for The Great Spousal Unit because she indulges me by letting me write a blog and podcast and go to diabetes events, and oh yeah, she makes it easier sometimes when I’m dealing with a difficult low. No doubt this list could be a lot longer.

There you have it. Next time someone suggests that diabetes is as simple as take insulin and go on with your merry little life, remind them that diabetes comes with a lot of extra costs. And they’re not all covered by insurance.
 

February 19, 2016 – 9:08 am Categories: Diabetes | Comments (3)

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Imperfections.

What is it about diabetes that just knocks us off our game now and then?

Nothing about diabetes is wonderful, unless you count the people you meet who are dealing with the same things, either by living with diabetes themselves, or living with someone who lives with diabetes. The rest of it pretty much sucks.

Still, sometimes we put on airs of “I’m a tough hombre” because we deal with everything this disease throws at us, and yet we get through it… we’re strong enough to suffer the slings and arrows that diabetes sends in our direction, and often we emerge from the battle stronger than ever. How many people with completely healthy bodies do you know who can put up with what we put up with on a regular basis?

I can’t say that’s how I was feeling the other night when I went to bed. But it had been a long time since I’d experienced an overnight low, and nothing about that Thursday night was any different from a thousand Thursday nights before it.

Insert diabetes… begin chaos.

I woke up around 1:30 a.m., feeling sweaty, and a little irritable. If I’m sweaty at this point, it means my blood glucose level has already sunk pretty low. Normally, when this happens, I just need to get up, go downstairs, get the juice from the fridge… I’m good. This night, I didn’t, couldn’t, get to the fridge. Instead, I sucked down a juice box sitting next to the bed. Then another. Then a package of peanut butter crackers. Then some candy. Then some peanut butter. Another juice box. In all, it took around half an hour for me to actually feel like myself again. Like I could even stop to check my BG. Prior to that, it was all about feeling well enough to remain upright.

Therein lies the problem with feeling like you’ve nearly nailed your management of diabetes. You get surprised when you least expect it. It’s also the point where a lot of People With Diabetes feel a lot of guilt. I was a little guilty in this instance. I had a snack that evening that I probably over-bolused for. It happens. It happened Thursday night. But unless I make a habit of it, I’m not going to feel bad about it. That kind of thing doesn’t work for me. And while I don’t want to tell you what to do, I think you should consider what I’m saying here.

This might sound a bit harsh, but when it comes to diabetes, guilt is for suckers.

It’s not that we’re perfect… no way are we perfect. But what’s done is done, and feeling any guilt about anything that happens to you because of a disease that you did nothing to contract is like blaming your parents for your eyes being brown. Sure, your parents had a lot to do with it, but your eyes are still brown. After the moment passes, we still have diabetes.

So Friday came, I went to work (tired and hungover and a little afraid of my next bolus), and I continued living. That’s the final victory.

If you want, think of it this way: our imperfections are only a trivial botched play in the middle of an otherwise victorious game. If we live, we win. I want to improve my game so I’ll be successful more often. But I’m also going to realize that sometimes, a botched play is going to happen anyway, and the best way to deal with a botched play is to make it trivial by making the rest of the game spectacular.

I’d rather concentrate on the spectacular.
 

February 16, 2016 – 9:08 am Categories: Lows | Comments (6)

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Not a schmuck.

SpareARoseBanner

Today, I finally got around to making my donation to this year’s Spare a Rose, Save a Child campaign.

I consider myself very fortunate, because sometimes I have a few dollars to spare to donate to worthy diabetes-related causes. More importantly, even if it were a real stretch, I would still want to find a way to give to Spare A Rose.

That’s not because it’s visible right now, it’s not because it’s the flavor of the month, it’s not because people I know and like are involved.

It’s because Spare a Rose, Save a Child saves lives.

The bad news: Children diagnosed with or living with diabetes in a developing country can die without access to the insulin, meters, test strips and more that are part of my simple, everyday management of this chronic illness. Why should those kids be left out? Why should they be denied the very things that will keep them alive?

The good news: I can do something about it. I can’t get CGM approval for Medicare patients approved all by myself. I can’t keep companies from marketing cinnamon/okra/yogurt treatments or “diabetic socks” all by myself. I can’t cure this stupid condition all by myself. But I can, all by myself, make a contribution that will make a measurable difference in the life of a child who could die without my intervention.

That’s pretty powerful stuff.

It’s a simple idea. The cost of one rose on Valentine’s Day? That’s about the cost of one month’s worth of life-giving insulin for a child living in a developing country. The International Diabetes Federation’s Life for a Child Programme has boots on the ground in those countries, saving lives where they otherwise would be lost. Partnering for Diabetes Change helps gather donations through the Spare a Rose, Save a Child campaign and get them to the IDF.

Look at the next child you see. Imagine that child not having access to the insulin they need to life the life they deserve. Then imagine what you can do about it. I’ll bet you can come up with something.

Giving to Spare a Rose, Save a Child means I’m more than just a schmuck with a blog. It means I’m a schmuck with a blog who’s a life saver too. Not the butterscotch kind, though those are pretty good. Think of yourself as the kind of person who saves lives. Then go do it. Give, so children can live.

CLICK HERE or on the banner above to donate to Spare a Rose, Save a Child.
 

February 12, 2016 – 9:09 am Categories: Advocacy | Comments (2)

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Like these links.

“They” like to say that all news is local, and in this case, the diabetes news is mostly local. Or at least local to where I am. Let me explain…

There is still time to register for the Diabetes UnConference, March 10-13, in Las Vegas. But even if you’re not attending, if you’re local, you can still attend the free Friday pre-UnCon sessions.

Want to explore sugar surfing with Dr. Stephen Ponder? Take a little time to go to advocacy boot camp? Want to check out the iLet? These sessions and more are open to the public on Friday, March 10. They are free of charge, but seating is limited. To secure your spot in one of the informative pre-UnCon Friday sessions, CLICK HERE.

Disclosure: I am part of the team of facilitators at the Diabetes UnConference in Las Vegas.
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If you’re living in the Mid-Atlantic, don’t forget about the JDRF Type One Nation DC Summit, happening March 5 in Bethesda, Maryland. This is another free event where you can get the latest on research, advocacy, and more. JDRF President and CEO Derek Rapp will give the keynote address this year. Gary Scheiner will be back, this time to talk about managing those pesky post-meal glucose spikes (guilty as charged). Tidepool’s Howard Look will be there, and if you haven’t yet heard him speak, you should. Cynthia Rice will cover advocacy for you, and the amazing Joe Solowiejczyk will be there to cover Diabetes and the Family: Making it Work for Everyone. All of it will be moderated by the fantastic Stefany Shaheen.

It promises to be another full day of information sharing and bonding with others touched by Type 1 Diabetes. For all of the information on the JDRF Type One Nation DC Summit, CLICK HERE.

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If you’re living in the Mid-Atlantic and you’ve somehow missed the notices about the Children With Diabetes weekend in Falls Church, Virginia April 8-10, consider this your fair warning. Think of this as a scaled down version of the Friends for Life conference that Children With Diabetes puts together in Orlando each July. And yes, there is plenty for adults as well as kids during this event. It’s for only one weekend, but there will be a number of topics presented by so many people who really know their stuff.

Gary Scheiner will be at this gathering too… Bennet Dunlap and Christel Marchand Aprigliano will lead three advocacy sessions, the last of which will include a panel discussion on artificial pancreas technology that includes Dr. Ed Damiano and Molly McElwee Malloy… and the Nightscout team will be there to tell you more about CGM in the Cloud, and even help you set it up for yourself. And that’s just a little of the incredible weekend that is to be in Northern Virginia April 8, 9, and 10.

To get more information, and to register for the FFL Falls Church weekend, CLICK HERE.

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Finally: Remember that HealtheVoices conference I went to last April? It’s coming back, April 15-17 in Chicago. Plenty of advocates living with numerous chronic conditions will gather and share and talk about how they get their advocacy on in their patient communities. This gathering helped me get the ideas to get my podcast off the ground last year, and I’m looking forward to what this year’s event will bring.

The best part? YOU have a chance to go too! Janssen Pharmaceuticals, which hosts the event, is taking applications from patient advocates who want to attend the conference right now. But they will only be accepting applications until February 22… so get there and get your application in today. To learn about HealtheVoices16 and apply for a scholarship to attend, CLICK HERE.

Disclosure: Janssen paid for my travel and accomodations to attend the 2015 HealtheVoices conference. All opinions are my own.

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As usual, March and April will be very busy months in the diabetes world. I hope you can make one or more of these important gatherings. Have any questions about any of them? Let me know.
 

February 10, 2016 – 9:03 am Categories: Events, Like these links | Post a comment

I need to write a letter.

A little noise came about earlier in the week when people noticed that the stock price of Eli Lilly & Company, a large producer of insulin, had slipped six percent in a single day due to concerns that complaints of price gouging could ultimately hurt their bottom line. According to the Nasdaq report, the price of Humalog increased 10% just in the past quarter alone.

A lot of people focused on a quote from Lilly’s CEO, John Lechleiter, who, in the company’s quarterly conference call, when asked about the big increase in the price of Humalog, said that while the treatment is costly, the disease itself is a “lot more expensive.” Well, thanks a lot for that. Part of why it is expensive is because of Humalog. I think that’s what he was saying there, right? The disease itself is a “lot more expensive”, so the price of Humalog shouldn’t be a concern then, m’kay?

But it was a similar comment on the call from Jan Lundberg, Ph.D., Executive Vice President of Science and Technology, and President of Lilly Research Laboratories, that made me cringe the most. He was asked by an analyst about the “drug pricing debate”, the upcoming elections in the USA this November, how he had mentioned earlier that the industry was beginning to defend itself regarding pricing, and how he sees it all playing out over the next few years. Here is part of his response:
 
 
“In terms of what we can expect after the election, anybody that thinks they can predict the nominations, much less the election right now, I would love to talk to them. But I think this is going to continue to be an issue, or it’s going to continue to be on the radar screen because of demographics. And to some extent, as people get older, they are going to be more and more reliant on our medicines. I think we’ve got to continue to demonstrate that there’s value in the medicines we bring. Yes, they can be expensive, but disease is a lot more expensive. And emphasize the fact that low-cost generics, which account for over four out of five prescriptions today, represent ultimately the legacy of these investment efforts on our part, and provide the American consumer with tremendous value. So I think you can assume the industry is going to continue to maintain an active dialogue with each of the candidates, and to work across party lines to make sure that the views that ultimately translate into policy — and that’s what we’ve really got to be focused on — remain balanced and factual over time.”
 
 
Last time I checked, there were still no generic insulins available on the market, nearly 100 years after the discovery and implementation of insulin as a means to keep People With Diabetes alive.

Just trying to remain balanced and factual here, folks.

So, that really bothers me… the clearly false dialogue that it’s okay to overcharge patients for drugs they cannot do without, because there will eventually be generics available, which there won’t. Ever, without a fundamental change in policy at the governmental level. For heaven’s sake, Humalog was approved for use in the USA nearly 20 years ago.

That’s the frustration. What can I do about it?

I don’t know if there’s much I can do about it at all. But I know what will make me feel better. I need to write a letter.

I say a letter because on the Eli Lilly website, there is not one single e-mail address available. But they did publish the address of the home office in Indianapolis.

Do you want to write a letter too? Does this comment bother you enough to voice your concern?

Address it to:
Jan Lundberg
Lilly Corporate Center
Indianapolis, Indiana 46285 USA

Use your words. Tell your story. Be fair. Be kind. Above all, speak from the heart.

I will be putting together my own message, which I’ll share once it’s sent. I don’t know if it will do any good, but I know it will make me feel better. And it can’t hurt.

It should be noted that Eli Lilly & Company provides a lot of insulin to the IDF’s Life for a Child Programme, which also is helped through donations to Spare a Rose, Save a Child. So we’re on the same team there. Lilly helps provide assistance for people having trouble meeting the cost of their medicines. All initiatives that deserve praise.

They also have an executive who made a disingenuous comment on their most recent quarterly conference call, and that should be noted as well.
 

February 4, 2016 – 9:11 am Categories: Advocacy | Comments (4)

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