Young and Sick

I’m partaking in this year’s Diabetes Blog Week. Each post this week will be based on a pre-determined prompt constructed by Karen over at Bittersweet Diabetes. You can participate by visiting her website.

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The Cost of a Chronic Illness – Tuesday 5/16

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?  (This topic was inspired by suggestions from Rick and Jen.)


Alternate title: how to piss off the entire diabetic online community on a Tuesday morning. (#thanksjen)

It’s no secret that having diabetes is expensive. It’s also no secret that no one in public office seems to understand that chronic conditions are usually the result of drawing a genetic short straw. I mean, check here, here, here, and here for examples from our elected (and appointed) officials.

For me, it’s the difference between being a stay at home mom, freelancing or working part time, or being a full-time working mom. I have a job with rare, excellent coverage and I have little to no complaints about my medical benefits. I have both individual and dependent premiums covered 100%. (I pay for it by not getting annual raises and a relatively low wage for my job description – but, win some, lose some.) I often go through scenarios where I opt to pull Bean out of daycare because I don’t think it’s worth my paycheck – then I realize that I’m probably also saving about $1200/month by getting insurance from my employer. With the legislature now rolling toward a repeal of the ACA that would effectively double the cost of any individual insurance plan for us, I will be staying at my job until I’m 70. In lieu of paying for individual medical insurance, I’d like to retire comfortably, save for an emergency and Bean’s college fund, pay off our mortgage, stay out of credit card debt, and a litany of other things other than a new iPhone every year.

 

How insurance companies see me.

My voice is one that Congress needs to hear the most. My experience as someone who is young and sick differs greatly from someone approaching the Medicare age. I am a middle-aged adult in the middle class with an invisible illness that requires high-cost, around the clock maintenance. My income disqualifies me from most drug rebates and assistance programs. However, I don’t just have $10,000 per year lying around. Obviously, we are smart enough to cut non-essentials to keep the insulin flowing, but at what point do you deem retirement and fiscal responsibility a non-essential?

But, if you listen to news coverage or our public officials, our stories are seemingly left out of the conversation. I’ve been trying to think of ways the health care conversation would be different if the “young and sick” had seats at the table. Several things would need to be accepted beforehand:

  1. That not all chronic conditions are the result of lifestyle choices.
  2. That medical costs not only are a drain on those on fixed incomes later in life, but also hinder the choices young people make about their futures.
  3. That those younger will effectively pick jobs or careers based on benefit packages offered by an employer.
  4. That chronic conditions don’t benefit from catastrophic coverage alone.  
  5. That a majority of Americans are one diagnosis away from medical bankruptcy.

It’s hard to get anywhere because the current conversation revolves around Americans obtaining affordable health insurance and confusing it with getting affordable health care. Until we can accurately address the rising costs of medical care with our legislature, we will continue to fight the wrong battle. Have you considered looking up the Diabetes PAC?

Friday Five: WDD Aftermath Edition

Happy Friday. Hope you are still wearing blue today. 🙂

1) A friend of mine is hosting an all girls slumber party this evening. Complete with adult beverages and junk food. Super fun, right? Made me remember some of the sleep overs I didn’t have as a child. I wasn’t actually allowed to spend the night at a non family member’s home until I was in 6th grade or so. Maybe 7th. My parents hosted sleepovers in our own home, sure. But given my late night lows due to the insulin regiment at the time, my parents didn’t feel like explaining it to each and every parent that hosted a sleep over birthday party for their daughter. So I’d stay at the party until about 10 pm, and then my mom or dad would come pick me up. (Just in time for my evening shot before bed.) If they were close, I could re-join the party the following morning.

In a similar fashion, since I have a very busy weekend ahead of me and staying up until 2 am sounds like a bad idea, I’ll also be leaving the party early to sleep in my own bed.

2) I’ve been following the #Dbminesummit tag on Twitter because there appears to be a lengthy, emotional panel on insurance coverage needs for PWDs. More proof that insurance agents have no souls and my chronic condition is just their next cash cow. It’s a bit infuriating. (To put it lightly.) Especially considering the current stance on “health care for all” in this country.

3) Speaking of insurance, the topic has been a “hold your tongue” exercise on my Facebook wall. Sometimes I succeed. Other times I don’t. But anyone who thinks the pre-ACA system was fine is seriously delusional has never had a chronic condition. (And I have the medical bills to prove it.)

4) This post kind of made my day. And this one.

5) One more week until Disneyland.

Friday Five: Extended Weekend Edition

1) Hey – I have a Twitter account. You can follow me and it won’t be creepy. Sometimes I post there more often than I do here because it doesn’t require much thought. @seejendance or click the feed below.

2) Speaking of Twitter, I posted a question that I might have better luck getting answered here. I’m traveling for another swing convention this weekend and my sensor decided to go ape-shit crazy soon after I left the house. I really, REALLY need an accurate idea of what the ol’ BGs are doing during all the comps and late night dancing. But – I have this fine gauge, 1 inch long needle to somehow dispose of while not in the comfort of my own home. I didn’t bring a sharps container with me because that’s awkward. I did bring my old Safe-Clip (not this one exactly… the old orange ones.) What do you do with sharps when you travel?

3) There has been a large forest fire burning in Yosemite for the last couple weeks. It’s mostly affected Reno, parts of Tahoe, and other areas along the Cali/Nevada border in terms of smoke. However, my neck of the woods smells like a giant gas grill burning last week’s chicken. Plus it’s hot and humid. I’m very excited to be leaving promptly after work. I don’t think my allergies would hang very well.

4) Is isolationism really that bad? Maybe I should be moving the Switzerland. They have a better health care system, right? </semi political rant that isn’t safe anywhere on my Facebook wall>

5) Today, there was a “town hall meeting” in my neck of the woods for Covered California – an organization offering affordable health care options for the uninsured in California. I thought it was formed to comply with ACA, but I’m not so sure because it doesn’t mention anything about it on their website. Anyway – since health insurance is the bane of my existence important to me, I decided to check it out and see what could be offered to me. In a nutshell, there are four plans available. If you make less than a certain amount of money per year, you could get access to cheaper plans, which are a lower monthly premium each month. However, you pay an arm and leg for appointments and prescriptions. The higher end plans have lower, more reasonable co-pays, but you’ll drop about $480 per month for that luxury. <sigh> Guess it’s group insurance for me and I’ll be holding on to this COBRA plan for as long as humanly possible.

Have a good, extended last weekend of Summer!

June DSMA Blog Carnival

June’s Prompt: Regardless of which type of diabetes you have – T1 T2 or T3 – you probably use one or more diabetes devices on a daily basis.   For this post, when we refer to devices we mean blood glucose meters, insulin pens or pumps, and all other diabetes medications.  This month we’re going to revisit the May 15th chat on Diabetes Devices and really think about what we use.  We’d like to know:

How do you select the diabetes devices you use?  To others looking into new or replacement devices, what would be your best advice to someone shopping around?

It’s simple really. What will my insurance cover for me at little to no out-of-pocket expense or what can I get for free?

I’m a Medtronic Minimed user by default. My old HMO had a contract ONLY with Medtronic so that’s what I was ordered when it was decided that pump therapy was the way to go. So I didn’t even get a chance to research Animus, et. al. My insurance was going to cover a Minimed… the end.

Same goes for my One Touch meters. The HMO didn’t cover the Accucheck brand strips – so all of the fun meters I saw and wanted to try were unavailable unless I wanted to pay full price. And as a poor college grad, why the hell would I want to pay full price for anything when I could get it for 20% and or free?

My new HMO is a bit more flexible. Apparently I can order strips for my Bayer Contour Link with no problem or added expense pending I didn’t already fill a 3 month supply of One Touch strips.

That said, I wish I had done more research before blindly calling Medtronic and ordering their CGM. Yeah – I didn’t like the idea of carrying around two devices all the time, especially when I barely have the pocket space to fit one. So having the one inclusive device was very appealing to me. However, given all of the issues I’ve had with my Minimed CGM, I really wish I had just stopped, thought about it, maybe tried it out (which I wasn’t sure I could do), asked more questions, etc. But I think I was so excited at the prospect of even being able to get one for the first time that I just jumped on the most readily available option. (My old HMO also didn’t cover CGMs unless you were deemed “brittle,” which… I don’t understand why.)

I’m happy to have the technology that I do. But my decisions really come down to the bottom dollar. I’m stubborn enough to not want to pay an exorbitant amount of money for my care, especially if I can get something that works “okay” or “half-way decent” 85% of the time. I’m excited when things are covered at all.

If you are looking for a new device, and money is no object, kudos! Explore all of your options and figure out what works best for you and your lifestyle. Don’t want a meter that take more than 10 seconds to give you a reading? Don’t get one – there are plenty of other options out there. Check out websites, reviews from other users, call and harass customer care.

If money is an object, consult your medical insurance, HMO, and docs to make sure THEY haven’t already made the decision for you like they did for me.

This post is my June entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/june-dsma-blog-carnival-3/