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DBlogWeek 2017: The Cost of Chronic Illness.

Diabetes Blog Week prompt for Tuesday:  Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?

Aaaaaaarrgggghhhhhh this post has me writing and erasing sentences left and right.  I’m not even sure where to start.  This whole topic frustrates me.  Best to jump right in:

I remember, when I was small and under my parents’ care, my parents had to battle with their insurance company to cover more than four blood glucose test strips per day for me.  Since becoming an adult, I’ve had good insurance where my deductible was $300, out of pocket max was $500, and all of my supplies were covered at 100% so long as I was “in network.”  I’ve had crappy insurance where my deductible was $5000, no out of pocket max, and my pump supplies were covered 80/20.  (Those two years were the most I’ve ever spent on care in my life.) I’ve never been without insurance because I was raised fearing a lapse in coverage.  When I graduated college, I had a job that started three days later so that I wouldn’t have a coverage gap.  I remember when Chris and I were first married, we struggled to find an insurance policy to cover the two of us in a way that we could afford while also providing decent coverage for my persistent medical needs.

Living without insurance coverage was always presented as a “DO NOT,” but as the years have gone on and greed, corruption, and the breakdown of the healthcare (wealthcare) system became dominant over caring for patients, I’ve seen how being insured can still break your finances apart.  Families struggle to make medical ends meet and oftentimes can’t, making awful decisions – if you can even call them that – between paying rent and buying medication.

I am not a conspiracy theorist.  But what the fuck, Pharma … why are you always raising prices on essential drugs?  Because you know we’re trapped?  Why did insulin cost like $45 per bottle when I was diagnosed but is now upwards of $280?  I can only understand so much R&D because after a while, it starts to read like GREED.

Reading articles like these give me such rage (with a side of panic):

Insulin price hikes tell us a lot about what’s wrong with drug pricing in America

Eli Lilly Raises Insulin Prices While ‘Supporting’ People With Diabetes

On Lilly’s unconscionable insulin price increase

Doubt what they say. Believe what they do.

Eli Lilly raised prices on 9 drugs last week

Patients Beg For Pricey Drugs On Facebook Black Market

And I see a dozen different advocacy groups working towards the same goals – improving access for people with diabetes – but they aren’t always working together, which is infuriating to watch.  (Also, Melissa Lee wrote a great note on Facebook about the word “access” – read here.)  I do not know the behind-the-scenes details of which org is talking to who and what funds what and who has opinions on what sort of things, mostly because I’ve been out of the loop for the better part of a year (something about an infant invading my home), but looking at the community from 10,000 feet, there are a lot of dots.  And they could use some connecting.  And to be totally honest, I have no idea how that will happen.

Check out these orgs/efforts/opportunities and see if anything leaps out at you.

Check out the T1International Diabetes Access Advocacy Toolkit

Join the Access Alliance

Join the Diabetes Patient Advocacy Coalition

Download the Diabetes Patient Advocacy Coalition app

Take action with the American Diabetes Organization

Support JDRF advocacy campaigns

Explore Beyond Type 1’s Focus on Access

International Diabetes Federation’s Advocacy resources

The website is always awesome for policy action (not just healthcare)

Because here’s the thing:  our community is divided by a dozen different things but we are UNITED by our common circumstance:  diabetes.  By uniting and raising our voices with compassion and conviction, we can make the difference and become the change our community deserves.  The cost of chronic illness is staggering, but the price of staying silent will make matters worse.

… and how great is Diabetes Blog Week, serving as the opportunity you may have been waiting for to get loud.


20 Comments Post a comment
  1. I feel like this topic, and this week, could not have come at a better time. I’m happy to see so many voices raised.

    05/16/17; 4:19 pm
  2. Great post and thank you for laying out all the resources for staying engaged. You are spot on when you say we are united and that in coming together we can make real change. Thank you for your voice!

    05/16/17; 6:20 pm
  3. I am glad you weighed in, this remains one of the most difficult issues we as a community face.

    05/16/17; 9:10 pm
  4. Denise Weren #

    I feel so lucky to have T1D in New Zealand. For a $NZ14.00 prescription every three months, and a $NZ5.00 pharmacy charge, I am supplied with needles, lancets, Novorapid, Lantus, Glucagon, testing kits and insulin pens. I can’t imagine the stress of dealing with health insurance for these essentials. I also get free appointments with my diabetes educator and with a dietician annually, or as much as needed. I have additional health insurance for surgery cover, in case our public hospital waiting lists are too long – and they can be for elective surgeries. But for my diabetes needs – the T1D community seems to be well looked-after.

    05/16/17; 9:29 pm
    • Katie S. #

      As I was reading your comment, I thought “oh $19 copay for a prescription isn’t bad”. Then I nearly spit out my morning coffee when I realized you’re paying $19 for a 3 month supply of ALL of the prescriptions, not $19 PER prescription. WOW. I don’t even care what the exchange rate is between US and NZ dollars–it’s still shocking.

      05/22/17; 9:08 am
  5. Kerri, thanks for posting those resource links. For the majority of my 62 years living with this disease, I’ve had insurance coverage. The years without coverage ate huge holes in my savings and were very difficult. I discovered that there were mail order sources for HbA1c’s and T3 for thyroid, and also that glucose test strips and insulin was available for purchase on eBay. It’s all a crap shoot, but I was very fortunate to be dealing with honest people who sold legitimate products and took care to package them correctly. Not everyone is that lucky. This is a problem that’s only growing larger for more and more people. We all have to be advocates!

    05/16/17; 9:55 pm
  6. Mari #

    I am an American living in France. I feel so lucky to be covered by state insurance for my diabetes at 100%. And also the prices of doctors’ visits and medecine are no comparaison to what you pay in the States. our salaries are smaller because of this insurance but I assure you it is worth it. Chronic diseases are covered at 100% and other sickness, medecine at 65%. A lot of people have a private insurance to pick up the difference. (I don’t – low income)

    To give you an example of price differences : generalists are paid 26 euros,($28), specialistes around 32 euros (£35). 5 humolog pens = 45 euros ($50). Reminder= for chronic illness patients = $0.00 My pump is covered (rented and replaced regularly) plus the glucometer and strips. BUT CGM are more of a problem and are not yet taken into account except pregnancy or special problems. On June 1st we are going to be able to have the Free Style Libre. I’ve been buying the sensors myself (120 euros/month) and that is a great new step.

    I have been following closely ObamaCare and the new Trump revisions. It is so complicated, I can’t believe it and you still have so much to pay. Our insurance seems so simple! yes, some people or hospitals or maybe doctors take a little advantage of this system but for all the good it is doing, I prefer to overlook. It’s not a majority. The only other problem I can see is that people don’t realise HOW LUCKY they are.

    05/17/17; 7:46 am
  7. GM #

    It reads like greed because it IS greed, and I’m the first person to lay a large slice of the blame for rising costs at the doorsteps of big insurance and big pharma. Having said that, as I patient, I also feel some responsibility to use my insurance judiciously, because when people with insurance don’t do that it raises costs for everyone. That means, as I explained recently to my pump sales rep, that I won’t be getting a new pump just because the warranty on the old one is up, when the one I have is perfectly good. That’s a want, not a need, and the fact that my insurance will pay for a new one isn’t a reason to get it. The insurance company may be writing the check, but it’s all of us that are paying the bill.

    05/18/17; 2:05 pm
    • andrew #

      Well said. I was raised to use what you have…take care of it. Of course it’s always good to have some extra supplies on hand if you can get them. I was on short term disability we was grateful I had supplies horded.

      05/18/17; 2:24 pm
    • Louise #

      That’s an interesting comment, and I’m glad you made it. As much as I whine when my insurance company makes me pay ridiculously high premiums/copays/deductibles for my meds, and as much as think, “I wish the insurance would take more of the hit sometimes instead of my savings,” I STILL find myself being frugal with diabetes supplies, with the insurance company’s costs in mind. I wear my Dexcom sensors as long as I can, I use my transmitters, receivers, and pump until they actually stop functioning, and I never waste a drop of insulin – even if its been a tad past 28 days of an open bottle, or it’s left over from a previous pump reservoir! Perhaps it is more that I don’t like to be financially wasteful, whether that wastefulness is hurting me and/or the insurance company. But it is probably true that people who are less mindful about diabetes spending (or any type of medical spending, for that matter) are making the prices higher for everyone in the long run. Of course we should all have access to the things we definitely need, but I’d agree that access doesn’t entitle us to be wasteful in situations where it is not a large inconvenience or detrimental to our health to be more frugal.

      05/19/17; 11:42 am
    • Katie S. #

      I get your point. However, the only problem with not getting a new pump is that if your pump malfunctions, and it’s out of warranty, it could take WEEKS to get a new one. But if you’re still in warranty, a new pump can be overnighted to you (at least that’s my experience with Minimed). I prefer to stay in-warranty. The only time I didn’t was when I knew Minimed was only a few months away from launching their new pump and I wanted to wait for the upgraded features instead of getting the same pump I had for another 4 years.

      05/22/17; 9:16 am
  8. Nicole Livengood #

    Thank you for writing, this Kerri. It’s the post I was trying to write but could not, because of the ARGH factor, and you expressed the costs and the ARGH beautifully.

    05/18/17; 8:25 pm
  9. K. #

    Daisy, huh? “You don’t even have a real job.” (Is that a joke??)

    05/18/17; 10:33 pm
  10. Freesia #

    Daisy…what a mean spirited, negative, ignorant thing to say. Did I leave any adjective out?

    05/19/17; 8:21 am
    • Blocked. You left out “blocked.” 🙂

      05/19/17; 3:54 pm
  11. Keri, Thanks as always for your insight. It is appreciated.

    05/19/17; 3:51 pm
  12. Keri, Thanks for the orgs/efforts/opportunities list. And I’ve been amazed that you have been able to post at all in the last year. You definitely have a full plate. Thank you again for your insight.

    05/19/17; 3:55 pm

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  1. Day 2 of DiabetesBlogWeek: The Cost of A Chronic Illness

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