Insurance coverage: advocating for CGMS in a system that leaves many people out

Today I received an email from JDRF about their campaign to get continuous glucose monitoring (CGMS) covered by insurance companies. I want my insurance to cover CGMS so that I could use it. I don't think they have any business denying people coverage to this device that is helpful to our health and probably lifesaving for people with hypoglycemia unawareness. But I also don't think health insurance companies or our health care system in general as any business denying anyone coverage. It pisssed me off that this is JDRFs focus when there are more pressing issues for many people.

I wrote back:

I want CGM covered, but MUCH MUCH more than that, I want a single payer health care system that covers everyone in this country.

Please fight for things that will help ALL diabetics and that are much more necessary than CGM. I test 10 times a day, and sometimes wish I had CGM (for example, tonight, I am up late because I worry that my blood sugar is dropping). The diabetics that come to the free clinic I volunteer at are all uninsured, and cannot afford test strips. If they come to the clinic, wait on the waiting list for the diabetes education class, and then attend all the classes, they receive enough strips to test once a day. Though they are type 2s, this includes many people on insulin. People taking insulin that can test their blood sugar once or less a day. As for yearly dilated exams (more often if retinopathy is already present)? The waiting time to see an opthalmologist is 22 months

The millions of diabetics that are uninsured or underinsured and can't even access the basic necessities of diabetes care deserve much more help and I think it's abominable that this is your priority.

Sincerely,
me

We need healthcare for EVERYONE that leaves nobody out. We need a universal single-payer system (expanded & improved Medicare for all) now.

Thinking back to the aftermath of Hurricane Katrina

Hurricane Gustav and the anniversary of the destruction and criminal neglect of the people in New Orleans after Hurricane Katrina had me thinking back. Katrina hit before I left home in Chicago to go back to school for the year, and the aftermath continued as I settled in on campus. One of my professors remarked that people "feel like the world is ending" with all of the recent events - Katrina, the tsunami in late 2004, even going back to September 11th.

I didn't share that sense of terror or a strong connection to events like the tsunami or September 11th (especially not September 11th, which did not seem any more tragic to me than the tens of thousands of people that die every year in the U.S. from lack of access to healthcare and other forms of violence the media is not interested in). Yes, sadness that so many were dying, frustration and disgust with the responses of people and structures that could have helped prevent tragedies of such scale or responded better, and dizziness from just trying to understand the sheer numbers of deaths, which my brain couldn't even compute. But not a sense of terror or grief that shook me to the core.

Katrina was different.

I was watching TV with my mom, and suddenly I found myself sobbing. The camera had just showed a young black woman crying and screaming that she was diabetic and she needed insulin and that she was going to die if they didn't get some insulin to her. It just got me - I reacted before I had even thought about it. It made me so upset and scared and incredulous and disgusted. It was just so wrong and so upsetting, and I did not understand how anyone or any structure could do that (deprive someone who is insulin dependent of their insulin) to another person.

Once I thought about it, I got enraged at everyone, the government especially but even all the way down to the news crew. If they had those resources (electricity and transportation and contacts and enough expensive equipment to get on national TV), how could they stand there fucking taping her screaming for her insulin and not get her some? This was not the first day after the hurricane hit either, I think it was at least day 3.

But what got me on such an immediate, visceral level was clearly the type 1 diabetes. And probably some element of seeing myself in that woman. Although I know on a rational level that my chances of being in that situation, as a wealthy white person with connections (in healthcare), are almost non-existant, it struck me. Maybe poked past some of the filters that structural racism has taught me to look through and the mainstream media perpetuates? Or perhaps I shouldn't have been surprised, I don't usually watch a lot of TV and so don't see all of the gruesome visuals on some disasters.

It also seemed much more urgent and close and part of my life because it was closer and happening in my country, a system that I am more directly part of. It was crude injustice: racism, classism and poverty laid out in such a raw, visible way. Ignoring or moving at a snail's pace to help people that are dying, in a way that just showed how little regard most of the people in power had for their lives. That stuff exists here all the time, but it was magnified and made more visible by the hurricane.

Inventions I could actually use...

There is this gadget I have had in my head for a few months now. I swear, it seems simple enough, and important enough, that someone should be able to create it (or should have already). They're working on continous glucose monitoring sensors, even islet cell transplants. But what about just figuring out if my bottle of insulin, right now, is still good?

I want a little device that I can inject a few units of insulin into that will tell me if it is still good or not. One that could've helped me out last weekend, when I had no idea why I was 389 after dinner. Did I really do that bad of a job counting the carbs I ate? Or was that afternoon on the beautiful Lake Michigan beach too much for my vial of insulin without an icepack, even though I was careful to keep it covered up and in the shade?

A device that could've helped narrow down the cause of several spates of ridiculous and unpredictable blood sugars I've had over the past year or two, during which I was getting my insulin from a mail order pharmacy (way cheaper) that didn't seem completely trustworthy. Like when the insulin showed up during our late-summer heatwave last September and the ice was all melted. And when I called the company pharmacist to ask, he said, "Well, it took 5 days after it left our warehouse to arrive at your post office. We aren't responsible for what happens when our shipper has it." (WTF?! I'm paying you for my insulin and you can't be responsible for whether or not it gets to me in working condition?)

Anyways, someone needs to create this little gadget. It should be totally doable... the heat just denatures (unravels) the insulin proteins, right? So something that could detect the shape/structure of the insulin could figure it out?

I want inventions and technological advances that can actually help me control my blood sugars, and make doing so less stressful, and more convenient.

I want to know if my insulin is working or not, and not have my own body be the experimental test tube taking the hit to figure it out.

I want an infusion set that delivers insulin in a way my body can absorb (as it seemed I couldn't absorb well from all the infusion sets I tried in the last round of extreme blood sugar unpredictability and highs). I don't care if my insulin pump looks like a Minimed, an OmniPod, or an iPod, as companies and some diabetics are concerned about, judging by consumer surveys I did and blogger design contests. I just want it to work.


P.S. Thanks to everyone who commented on the last post (a gajillion years ago). It was nice to hear your thoughts and experiences and have a little discussion/support/camaraderie.

Before and After.

Ok, so this is what I meant to post about when I wrote the last one.

So maybe it sucks that this kid's body is getting displayed everywhere, but here's a before and after picture, courtesy of the awesome "Broken & Fabulous" zine. It's a type 1 diabetic kid in the 1920's, before and after insulin was discovered (and she was one of the lucky ones to get access to it in time). I'm sure some of you fellow diabetics have seen it before:
The above is just one of many reasons I don't respond well to pictures like this:
or this:

or people telling me how I look great after I've lost some weight (which this time, is largely due to high blood sugars, since I have definitely been exercising less and eating either similarly or more food and less healthy foods). So it is definitely not from being "healthier" this time, it's from being less healthy.

I have several issues with the prevalent "weight loss is always positive" idea, but this is just a part of why it's more complicated (medically/physically and emotionally/psychologically), and what it means to disappear or not disappear part of your body, what starvation means, etc. to me.

407 at 3:29

So despite promising myself earlier today (and yesterday, and last week) that I need to get on a better schedule, I'm up posting this at 3:29 am. Last night I actually had a dream which involved getting to work late, people stealing my desk (which actually does happen a lot, but this was more severe), and then realizing I was in some pretty awkward pajamas and not work clothes. And then I woke up, waaay after my alarm had started going off.

I actually did turn off my computer earlier (before 1) tonight in an effort to get to bed at a semi-reasonable hour, but I turned it back on because I was really frustrated with blood sugar issues, so I wanted to settle down (and break me off a little piece of that diabetes OC to help) before I try to go to sleep. Basically: after working out tonight, I'm 97. I don't eat anything, I go grocery shopping (which usually drops me), and 3 hours later, I'm 397. Wash hands, repeat: 382. Yup. My site doesn't hurt, no visible blood or loose tape, and isn't due to be changed until tomorrow afternoon (I try to change it every 2 1/2 days or less). When I took it out, there was blood in the cannula - but I had no way of knowing the site was bad until my blood sugars went nuts (and for a second, I felt guilty for not having tested for 3 hours, and then I realized that is ridiculous). I gave myself a shot, fairly aggressive but not super aggressive because it's near bedtime, and 2 hours later I haven't budged - I'm 407. Don't want to give myself a lot more insulin since it's still bedtime and sometimes my body reacts really late to insulin and I bottom out, but probably I need more before I go to sleep.

I know sites fail occasionally, but I just am frustrated and worried cuz it's happening all the time, again (this happened to me last winter/spring, I took a pumping break and tried some new sites). It seems like my pump isn't dependable anymore again. Or I don't even know. I have been in the 300s routinely in the last few weeks, despite not being sick, testing 12+ times a day, and not drinking much at holiday festivities. I started paying less attention because I was exhausted/burned out from paying so much attention and having things still not work out. Sometimes I am eating crappy or underbolusing or needing an adjustment in my insulin rates because I've been exercising less, but I don't even know how to sort out what's what, changes I need to make or bad sites any more. Between not trusting my pump and being burned out, I sometimes can't figure it out or just don't have the energy to. You know it's bad when you're going through ketone strips like crazy just to try to figure out if your pump is working... (hey, at least walgreens started making the generic ones now!)