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December 01, 2008

Dexcom Discard.

Holy December - I can't believe it's the end of the year already!  Holiday chaos reigns supreme, starting with this past weekend's Thanksgiving holiday and stemming straight into New Year's.  Since I've been wearing the Dexcom pretty regularly (approximately five or six days in a row, then a day or two off), I realized how awesome it is to have that little thing attached during holidays like Thanksgiving. 

I slapped on the new sensor last week and it stayed pretty solid until last night, when the adhesive was peeling too much for me to handle.  (It gets itchy once it starts to peel, and that makes me craaaazy.)  

Dexcom sensor before I pulled it off.  All tattered.

This is the sensor after six days of changing clothes, working out, spending hours in the car, wool sweaters, multiple showers, and the general wear and tear that I put my body through in the course of a week.  The sensor is still attached, but the gauze around it isn't in good shape.  So I decided to pull the site and reapply it this afternoon.  Dexcom discard.  I'm freewheeling without the Dexcom at the moment.

The graphic on the Dexcom receiver that indicates ending a sensor run makes me laugh every time.  The little guy tosses off his sensor with reckless abandon into the garbage can.  Then it asks me, "Okay?"  Okay, let's throw the whole thing out.  (Note:  You don't throw the whole thing out.  You remove the EXPENSIVE transmitter first, then throw out the sensor housing.)

Bye bye, Dexcom sensor!

This past sensor was a bit of a needy one - it didn't want me to shower, apparently, because it kept throwing the "???" at me (meaning it's "confused" and needs a few minutes to catch up) every time I was in the shower.  It also wasn't as tolerant as usual when it came to distance, so instead of keeping it on my bedside table or on the back of the headboard, I had to tuck it under my pillow.   Maybe wearing the site on my lower back instead of my arm caused the difference in transmission - I'll have to see if it happens next time.

Watching my numbers closely for the holiday really helped out a lot.  I saw that a glass of white wine on an empty stomach actually made my blood sugar spike almost instantly.  I also saw that lemon meringue pie (de-li-cious) didn't do much after 15 minutes, but the 40 minute mark showed a real intense spike.  Insulin?  Yeah, it takes at least 35 minutes to impact my blood sugars, but knowing that made me more precise in when I bolused.  The result?  Elevated blood sugars during Thanksgiving (avg. about 195 mg/dl) but I didn't hit the wicked highs, and once I was high, I wasn't stuck there for hours.

Thanksgiving has come and gone, but I'm thankful to have another effective tool in dealing with diabetes.  Now it's time to get to the damn gym and work off that pie. 

November 25, 2008

Dexcom Sensor Video - Sort Of.

I've had several emails about how to apply the Dexcom sensor (watch the video), how big is it (like two quarters side-by-side), does it hurt (not usually), does it automatically give insulin (no - that would mean it's a pancreas), does it need to be fed or watered (no), can it fly (yes - when I throw it), do I like it (yes).

I wanted to do an akward little instructional about how to apply a new Dexcom sensor to my lower back, and with Chris's help, I think we captured most of it.  It gets a little shaky in there when we're clipping in the transmitter to the sensor housing, but you get the gist.  Hopefully.  :)

As far as placement goes, I've worn it on the back of my arm, on my abdomen, and on my lower back.  My main issue is keeping that sucker STUCK to me for the full duration.  For those of you wearing a Dexcom, where are you sticking your sensors?  Any tips on new places?  

(Please forgive me for talking so damn fast on that video.  I forget that not everyone communicates at the same foolish warp speed as me.  I need to take a breath!) 

November 20, 2008

Just Another Morning.

Wake up with a start as the alarm begins to blare,
Groggily come to and push aside my mussed-up hair.
Reach out to the nightstand and retrieve the zipper case,
Fumble with a strip and finally get the thing in place.
Lance my finger, squeeze a bit, and for five seconds wait,
Hear the beep, watch the screen, and see the "108."

Disconnect the pump with a quick and easy snap,
Grab that little plastic thing that I call a "pump cap."
Bring the Dexcom with me and connect it to the door
So I can shower, get all clean, and data will still store.

Towel dry - so careful, watching for the set and sensor,
Grab my robe and reconnect to the insulin dispenser.
Blow dry hair, drag a comb, and make attempts to dress,
Aim for outfits that conceal my pump with learned finesse.

Make my lunch and grab some snacks, minding carb-y grams -
Greek yogurt, green beans, protein bars - my morning snack grand slam.
Throw it all into my bag - I just have one more thing to add!
Toss in a tube of glucose tabs for all the lows this week I've had.

Snake the pump tube down my leg, tuck the pump inside
The trouser socks I love to wear - perfect for pump to hide.
Check the Dexcom to see for sure that I'm okay to drive,
Pet the cats, throw on my coat, and I'm out the door in five.

So much is diabetes, but it isn't my whole life.
I'm a daughter with type 1; I'm a diabetic wife.
It's in the fabric of my day, in the subconcious of my mind.
It explains so much of what I do, but I am not defined.

November 19, 2008

Need Some Adjustments.

The last few days have been nothing short of annoying - and I have the blood sugar logs to prove it.  In this past week alone, I've had six low blood sugar episodes ringing in under 50 mg/dl.  The lows are intense, sneaky, and have me fumbling with my meter, my hands, my words. 

Hypoglycemic unawareness is very, very scary to me.  It's this weird mix of being proud that I can still function at a blood sugar of 31 mg/dl, but also frightening because I'm not feeling the symptoms of a low until my body has almost crashed.  Last night, as I was getting dressed to go to Chris's film event in the city, I felt the teeniest twinge of a headache, but nothing that stopped me from doing my hair or brushing my teeth.  It wasn't until Chris asked me, nicely, if I was able to pull up HopStop on my Blackberry from the train.

My snippy response:  "Yeah.  I can, okay?"  Pause, realizing I was being enormously bitchy.  "I'm going to test.  I think I'm low."

A few seconds later, I'm looking at that officially scary number of 31 mg/dl staring back at me.  Still, no real symptoms.  I drank some juice, finished getting ready, and put on my coat and scarf.  It wasn't until I was all buttoned up and ready to go that my legs gave out and my brain went on hiatus.  It took about 30 minutes to fully recover.

Later on, during the screening, I tested at random and saw a blood sugar of 48 mg/dl.  More juice.  More nervousness, because that one came without any warning whatsoever.

I'm not sure what's been going on these past few days, but the lows have been unpredictable, yet daily.  I can't explain them with an "Oh, I over-bolused," or "I did a more intense workout than usual," or "Whoops, I forgot to eat!"  I even (TMI) took a pregnancy test to rule out any possible biscuit building.  Negative - no biscuit.  So now what?

Thank goodness for Dexcom.

My Dexcom sensors arrived via FedEx yesterday and I put one on this morning (after charging the receiver - I always forget to do that in advance).  Actually, Chris put it on for me because the sensor is on the back of my right arm today.

"I'm glad this is back on," he said, expertly pulling out the needle and attaching the black sensor to the housing on my arm.  Since I wear my sensors mostly on my arm or my lower back, Chris is the one who knows how to put them on best.  His hands move quickly and surely, talking to me as he attaches this device to my body.

"Me, too.  Yesterday sort of sucked.  The gym on Monday sucked, too."  The sensor clicked into place and he kissed me on the cheek.

"All set."

Now that I can watch the numbers trend and burn, I'm going to run a basal test for the next few afternoons, so I can see what the hell is going on with my body.  Am I suddenly more sensitive in the afternoons?  Is there something going on in the morning that is affecting my afternoon numbers?  Are the glucose gremlins on vacation?  I'm counting on my meter, the Dexcom, and a little old-fashioned freaking vigilance to help me find the source of these lows.

Either way, I'm still on this diabetes trapeze.  But at least I have a bit of a safety net now.

November 18, 2008

No More Larry Bird.

Dexcom - I need  you back!They left me alone for several months, but now the lows have returned, and they brought friends. Last night, before we left the house to go to the gym, I tested at 137 mg/dl. Knowing I'd be doing at least 30 minutes of cardio and some weights, I figured I should eat something. Grabbed a bar from the cupboard and chomped on it.

"Will that do it?"  Chris asked as he mixed up his protein shake.

"Yeah.  It has like 18 grams of carbs.  If I disconnect and eat this, I should be good."

Munch, munch.  Feeling good.  We drive off to the gym and go our separate ways - Chris to the weight room downstairs and me to the women's cardio section.  I hit the treadmill and dial up a 30 minute workout.

Music is loud - a little Muse.  My legs feel strong and my sneakers pound against the treadmill.  Strong, healthy, strong, healthy ... the words jostle around in my brain with each step.

But I start feeling a little funny at the 20 minute mark.  The music is too loud.  My headphones feel tight against my ears and my hands are numb at the very edges.  I scan the far wall of the room and the walls look a little wobbly.  My legs are a little wobbly. 

With the treadmill still running, I jump off quickly to the side and grab my meter from my gym bag.  Jump back on to the treadmill with the meter in hand, slowing down the pace so I can unzip the bag and lance my finger.

33 mg/dl.

"That sucks."  I press "Stop" on the treadmill interface and open my bottle of juice, taking eight long slugs from the plastic bottle.   My legs, which just a few minutes ago were holding me up just fine, feel like they're made of yarn.  Leaning against the railing of the treadmill, I finish the bottle.

This low feels particularly rotten.  Waves of nausea and a feeling of extreme light-headedness are coming up from my knees and cresting over my eyes.  I know I need to get downstairs and find Chris, just in case.  My legs work on autopilot, bringing me downstairs and into the weight room, where Chris is working out.

One look is all he needs.

"How low?"

"Thirty-three."

"Hmm.  Larry Bird."   He guides me by the elbow over to where I can sit down.  "Did you drink juice?"

"Yeah. I'm frustrated.  I only got 20 minutes into my workout.  And I feel like I'm all ..." Words aren't processing properly in my head.  "Mushy.  I feel mushy."

"You just need a few minutes.  You'll be okay.  Right?"

"Right."  The affirmation makes sense.  "Baby, I'm sort of tired of Larry Bird."

He smiled and we waited for the numbers to climb.

I don't know where these lows are coming from, but they are sneaky, intense little suckers that buckle me at the knees and steal the words from my mouth.  I'm waiting on my next order of Dexcom sensors to be shipped, but last night was one of those moments where I missed the Dex.  I would have at least seen the low creeping up on me a little bit.

But the wildest part is how strong I feel when I'm in that range, that 90 mg/dl range.  It's my magic number.  I feel strong, capable, almost borderline athletic.  (For those of you who know me in real life, you know how remarkable that statement really is!)  It's crazy how much just a little fluctuation in these numbers can really change how our bodies respond. 

Dex, I need you back, buddy. 

November 06, 2008

Petal By Petal.

I'm picking my priorities, petal by petal.

I'm choosing to wear this Dexcom and adhere another site to my body.  I'm choosing to have the beeps ring out and scrape against the walls of my office, letting everyone know I'm out of range somehow.  Sometimes the site doesn't bother me, sometimes it itches a little bit.  Depending on where it is resting, either on my arm or on my lower back, I sometimes see it in the mirror and am reminded of what I'm trying to accomplish.

I'm choosing to test my blood sugars and log the results regularly these days, even though keeping a log book goes against what appears to be my internal wiring.  I've always been challenged by keeping track of blood sugar numbers, even though just looking at a few days' worth of numbers really does help me isolate patterns.  I'm building a binder, and it's a pain in the arse, but I'm hopeful that tighter numbers will be the result.

I'm choosing to laugh at the things that hurt me.  When the infusion set hits a nerve as it goes in or when my CGM site bangs against the doorjam, I try to embrace my inner Yosemite Sam instead of letting the pain get to me.  Making this choice makes me hop around like a rabid bunny sometimes, and eventually gets me giggling, but it's better than feeling angry.

I'm choosing to go to the gym after work every weeknight.  I do not like the impact this has on my free time, and I don't always like the actual sweating part (oh how I hate to sweat), but I need to keep my heart healthy and my body strong ... and it helps clear my head a little bit, too.  So even though this hour and a half is something I want back at times, I know this choice is worth it.

I've chosen to limit my commitments these days, because over-extending myself leads to stress patterns that make my brain melt.  I'm stoked to do NaBloPoMo, but I've ducked out of doing NaNoWriMo this year.  I'm working at dLife and freelancing, but I'm being careful not to plan to be in fourteen different places at once.  I've decided to stay home in CT some weekends instead of making the long drive back to Rhode Island.  Peace of mind goes a very long way for me, and I'm making the choice to stay a bit more stable. 

Life gets busier and busier every time I blink, and I know it's not just me.  Everyone seems to have a side business they're cultivating, or organizations they're volunteering for, or events they're coordinating.  Life is blasting forward at a breakneck pace and we, as members of this community, have that added bonus of diabetes to manage in conjunction with everything else.  I'm trying hard not to get sucked into the stressful chaos of accomplishing everything, and instead giving a go at managing life petal by petal. 

Diabetes management, petal by petal.

October 03, 2008

Approved!!!

I have been approved!!!!!!!

YAY!!!!!!

They're covering my sensors.  I cannot believe it.  And from what I've been told, I'm one of the first on Connecticut's Oxford Health Plans to be approved for CGM use. 

Also from what I've been told, it takes an external appeal to make it happen.  So if you are fighting for CGM coverage, DO NOT GIVE UP.  Keep fighting!  Appeal every denial.  Make sure you don't miss any appeal deadlines!  It seems like insurance companies deny everything at first and only approve once you battle back.  So keep fighting, and do not give up!  (And use exclamation points!  Ahhh!  I'm so excited!!)

The tools to live well with diabetes should not just be for the people who can afford them.  Fight for your right for coverage.

October 01, 2008

Who Can Ignore The Economy?

Photo credit:  Fiction, apparently.Anyone who hasn't been storing their brain in a shoebox underneath the bed has probably realized that the economy is tanking.  People are being laid off and positions are being eliminated at companies.  Grocery money doesn't seem to buy as much now as it did even six months ago.  Gas prices, despite the fact that they've fallen a bit in the past few weeks, are still just under $4.00 a gallon. 

But these are issues that are affecting all families across the nation.  For us, diabetes care can also be affected by the crumbling economy.  My brain tends to go into panicked little pockets when I think about the economic situation.  For me, a job means more than just money - it's medical insurance.  Even now, in good health and without any outstanding medical bills, my monthly medical expenses add up.  From co-pays on items like blood pressure medication and birth control pills to the non-prescription items like prenatal vitamins and healthy food, it can get expensive. 

I was thinking about money in my budget that I consider well-spent, like my monthly membership to the gym and our grocery bill.  For some, spending $30 a month to workout and spending an inordinate amount of money on foods like fresh produce, organic products, and other fancy crap that they sell at Whole Foods and Trader Joes may seem like money that could be saved.  But when it comes to diabetes management, "control" is more than just the pump I'm using and the insulin I'm taking - it's about all these other variables, too. 

I remember (let's step into the Wayback Machine again, shall we?) test strips that could be cut in half, or into thirds, and at least the gist of a blood sugar level could be grabbed by comparing the color of the strip pad against the guide on the side of the bottle.  Granted, today's strips are more accurate, but are they really costing manufacturers $0.85 apiece to make?  (Because that's about what they charge us, as consumers.)  Diabetes supplies used to be able to go further.  Now they are indeed more accurate, but they don't go very far at all.  And keeping up with the costs of this maintenance, in addition to making attempts at important, preventative care like a CGM, is starting to make me a little nervous.  I'm finding my mind going back to the desire to wear infusion sets past their three-day shelf life and refilling reservoirs, to help extend the life of my supplies.  Ridiculous?  Yes.  But when I'm thinking about other life expenses - car payment, rent, utility bills, gas prices, and the occasional movie or night out - I find myself cutting corners where I can.

What are you guys doing to get the most bang from your diabetes buck?  Are you streeeeeetching out the life of insulin pump supplies?  Are you trying to gain insurance approval for a CGM as a way of conserving test strips?  Do you find yourself debating between paying for gas or renewing your gym membership?  The decisions are tough now, and I fear that they may be getting tougher in the future.  (And have you seen the Twitter election feed?  Regardless of who you're supporting in this election, this constant streaming commentary is pretty fascinating.)

The price of good diabetes control is high, and the cost of not trying to stay healthy is even higher.  How are you managing the cost of care?

September 25, 2008

When At First You Aren't Approved - Appeal, Appeal, Appeal.

There's a lot of buzz in the blogosphere today about insurance denials and appeals, starting with an article in the Wall Street Journal about "Pushing Back When Insurers Deny Coverage For Treatment."  Scott Strumello brought this article to my attention this morning via his comprehensive blog post about it, and Bernard sent me there again with his perspective.  And after reading everyone's take, in addition to having experienced three denials for CGM coverage from my insurance company (Oxford Health), I realize that I have gone at this problem the wrong way.

Insurance companies don't care about my future baby.  They don't care about my A1c.  Unfortunately, insurance companies are watching dollars and cents, not good sense.  A passionate letter from a patient doesn't even come close to moving an insurance company to provide coverage or overturn an appeal.  They seem to respond to "the facts" only, and I should have attacked them with facts to begin with.  Instead, I took the personal approach, which left me denied three times.  And it's partially my fault because I expect them to care, even when I know they won't.  My approach was arrogant, thinking they'd respond to actual emotion.

But this time?  No emotion at all.  This appeal was just the facts, ma'am.

I sent the Connecticut Department of Insurance a packet of information this morning, in hopes of having my Dexcom CGM system denial overturned.   I included the following:

  • Request for External Appeal form (my insurance information, healthcare provider information, detailed description of disagreement with healthcare plan)
  • The denial letter from Oxford Health Plans, stating that their decision is final
  • Proof that the service in question is a covered benefit (this was in the form of my insurance policy benefit handbook)
  • Executed medical release form
  • Photocopy of my insurance card
  • Documentation supporting my appeal, including a letter from me, my endocrinologist, and Dexcom
  • Oh, and a check for $25.  They specify that this is non-refundable. 
Insurance appeal packet - heavy.

Under the guidance of the Region Managed Care Director at Dexcom, the supporting documentation I included was very factual and devoid of almost any emotion.  My personal letter, which was written with the help of the Dexcom rep and is so stoic and so dry that it doesn't even sound close to anything I would say is supposedly an example of what "will work."  The letter from my endocrinologist cited my elevated A1c, the ADA A1c standard for pregnancy, the Factor V issue, 22 years of IDDM, and various complications I've experienced (including the cotton wool spot, high blood pressure, etc).

Dexcom also provided a packet, which included the recent NEJM study results and other studies supporting the use of CGM technology to better control diabetes.  The letter from my Dexcom rep included a demonstration of the proven benefits of CGM technology on health outcomes, and also outlined the appeal-denied-appeal-denied cycle that I've been in for the last few months.

So it's in the FedEx box now and waiting to be sent off to the Connecticut Department of Insurance.  Each item is tabbed and in the order requested by the appeal form.  It's on time, comprehensive, and fact-filled.  I hope this appeal gets my CGM approved.

The only frustrating part of this process was that I couldn't really lash out.  I couldn't tell these insurance companies what I was really thinking, which was along the lines of "WHAT THE FUCK IS WRONG WITH YOU?  CAN'T YOU SEE THAT THIS TECHNOLOGY WORKS AND I WANT A HEALTHY PREGNANCY AND WHO ARE YOU TO TELL ME I'M NOT APPROVED?!!"  (Ahem.  Sorry.)  It's infuriating to play by their rules, but I'll do whatever it takes to obtain approval.  It makes me absolutely crazy that this technology exists and it has worked for me and it's still not covered.  Don't insurance companies want people to remain healthy?  Isn't there a cost-benefit to them for acting proactively instead of reactively? What is wrong with this healthcare system?!

I'll wait patiently.  I'll hope that this fact-driven approach gets me somewhere.  And I'm very thankful for the assistance and support I've received from Dexcom, dLife, and my friends and family.

But I had to get my digs in somewhere - the memo line of the check is "ridiculous fee for appeal."  Jerkface insurance company.  They're messing with the wrong girl.

(I hope.) 

September 19, 2008

Arghhhh, Me Hearties.

The Friday Six:  September 19, 2008 edition

Holy late post, but better late than never, right, me hearties?  (Oh, this pirate crap will be the very death of me.)  Jumping right into this week's Friday Six!

1.  Yes, it's Talk Like a Pirate Day.  In celebration of this silliness, I offer you the Pirate Translator, some pirate jokes, and a Twitter avatar, courtesy of my extremely silly brother:  Kerri the pirate.

2.  The JDRF is still taking applications for the 2009 Children's Congress - but not for long!  The deadline for application is October 6, 2008, so if you and your child are interested in applying and representing the diabetes community before Congress, now is the time to apply.  Visit the JDRF website for more information.

3.  Another D-related event is the First Annual Diabetes Rockstar Cruise, brought to you by the folks at Diabetic Rockstar.  According to Sara, a SUM reader and a member of the Diabetic Rockstar crew, "The most exciting part about the cruise is that Carnival has a program called Cruising for Charity, where we will be receiving a portion of the proceeds for Fight It! our charity arm at Diabetic Rockstar.  Our funding goes to uninsured, in-need and newly diagnosed diabetics who need supplies and additional help."  Unfortunately, I won't be attending this event, but if you're interested in learning more about this cruise, taking place next May, visit the Diabetic Rockstar website

4.  And in my own personal diabetes news, I've been embroiled in the battle with Oxford Health of Connecticut for CGM coverage.  Fun.  (Sarcasm.)  I have a solid insurance representative at Dexcom who is helping me get all the paperwork together for my external appeal - yes, this is the one I have to send them a CHECK for, greedy bastards - and I'm working with my endocrinologist on a letter highlighting pre-pregnancy planning and the need for tighter diabetes control.  This is a paperwork nightmare, and now I understand why lots of people never get to this stage of the appeal, because it's so damn complicated.  BUT I am moving forward and will file this external appeal by the end of next week.  Hopefully this will overturn my previous three denials.  In any event, I'm almost positive they won't refund the $25 filing fee.  Pricks.  ;) 

5.  On the Children With Diabetes site, there's a short video about Friends For Life 2008, and you'll find a smattering of diabetes bloggers in there, including Sara, Heidi, Bennet, and me!  (And I look seeeeerious, since they caught me in the pregnancy seminar and I was all panicked ears.)  Check out the video!

6.  And I'm still woefully behind on vlogging, but I'm hoping to get a clip up here by Monday or Tuesday.  Next week is pretty nuts - I have plans for dinner in the city, I'll be at a seminar at the UN midweek, and I'm gearing up the dLife crew for our JDRF walk next weekend - but I need a little face-time.  I'm sort of short on vlog topics - any ideas from you guys?  For now, all I have is this sort of crummy quality clip from The Swell Season show on Wednesday.  I have another one, of one of their new songs, that I can post this weekend after I pull it from my KerriBerry

For now, I'm off to RI for yet ANOTHER wedding this weekend (btw, Chris and I have been married for four months as of yesterday - holy cow!) and to spend time with the family.  You guys have a great weekend!!!

September 08, 2008

CGM Study Shows This Stuff Works!!!

My insurance company still says NO to my request for approval of a continuous glucose monitoring system.  But - a ha! - a study conducted by the JDRF has given me something to print out and mail along with my third appeal.  Thanks to several dozen emails this morning directing me to the study and special thanks to Cynthia Rice, Director of New Technology Access in Washington, DC, I now have the inside scoop on why insurance companies should listen up and listen good:

Kerri:  This study quantifies the value of a continuous glucose monitoring device for people with type 1 diabetes, in particular, for adults aged 25 and over.  How did individuals over the age of 25 fare using this device?

Cynthia:  The study found patients with type 1 diabetes who used continuous glucose monitoring (CGM) devices to help manage their disease experienced significant improvements in blood sugar control. Overall, adults 25 and over lowered their A1c by .53%; were more likely to lower their A1c by 10%; and were more likely to reach target below 7.0.

Kerri:  In regards to the younger group, the kids under 15, how were their results similar or different?

Cynthia:  Children under age 15 using CGM were more likely to lower their HbA1c by at least 10% and achieve HbA1c levels below 7% compared with non-CGM users.  At the same time, the average decrease in HbA1c was not significantly different in the CGM and non-CGM groups.  Although the study was not specifically designed to assess the effect of frequency of CGM use on A1c, an initial analysis of the data suggests that patients under 15 who used CGM at least six days a week or more lowered their A1cs just as much as adults.  On average, only 50% of children under 15 who used CGM used it six days a week or more.

Kerri:  What is the assumption about the 15 - 24 age group?  Why didn't the use of a CGM make a bigger impact on their A1c values?

Cynthia: 
Fifteen to twenty-four-year-old CGM users as a group did not experience significant improvements in glucose control compared with the control group.  Although it’s clear from a preliminary analysis of the data that teenagers were the least likely group to wear the CGM near daily (30%), the study was not geared to answer this question -- however, many families with teenagers will not be terribly surprised with the result.

Kerri:  At a session at CWD in Orlando this year, Bruce Buckingham discussed how CGMs work best for people who wear them at least six days a week.  Your study appeared to confirm this statement, at least for the 25 and older group.  How does duration of use affect results?

Cynthia:  In the study, CGM use varied with age, averaging at least six days a week over the course of the trial in 83% of the patients 25 years and older, but dropping off to 30% of the 15 to 24 year olds and 50% of the 8 to 14 year olds. Although the study was not specifically designed to assess the effect of frequency of CGM use on HbA1c, an analysis presented this week at a scientific conference suggested that patients within all three age groups, including teens and young adults, who used the device at least six days a week had substantially lower HbA1c levels after six months compared with patients who used CGM less than six days a week.

Kerri:  Many people with diabetes are fighting with their insurance companies to get their CGM systems approved.  How can this study help move patients towards approval?

Cynthia:  By showing that CGM use improves glucose control, this study, published in the prestigious, peer-reviewed New England Journal of Medicine, gives justification for expanded health plan coverage of CGM.  JDRF will be briefing health plans on these results and encouraging people with type 1 diabetes and their loved ones advocate to their own health plans to cover CGM.  You can help secure coverage for CGM by clicking here.

Kerri:  And lastly, how can we, as the diabetes community, get more involved and help move research forward?

Cynthia:  When you click on this link, you can not only help secure coverage for CGM, but sign up to receive emails from JDRF on how you can advocate for federal research funding and get involved in your local community to help move research forward.  

I am Kerri and I approve this CGM.  I wish you would, too!

Thanks for your time, Cynthia!  And for more information on CGM insurance coverage, you can visit the JDRF website, sign the CGM Anti-Denial Petition, and check for more CGM updates here on SUM.

August 14, 2008

CGM Denial - Yes, Another One.

Battling for CGM coverage.Dear Liana Masone, Grievance Associate at Oxford Health,

What can I do to help you understand why my request for a continuous glucose monitor should be approved?   I've received your third and final letter, and according to your team:

"We have thoroughly considered all of the available information submitted in support of your appeal.  Based upon review of that information and the terms of your plan, a medical director with a specialty in General Surgery, continues to uphold the denial of coverage for the Dexcom sensors.  This type of continuous glucose monitoring has not been shown to provide superior health outcomes.  Therefore, an Oxford medical diretor has determined that coverage for the Dexcom sensors is Not Medically Necessary, as the term is defined in your Certificate of Coverage."

You know what's great?  The part of your website that talks about the 2008 Healthy Bonus Offers, claiming the following:  "We recognize there are ways we can help members reduce out-of-pocket health are costs.  We believe in the power of prevention: that is  by taking a little extra time to eat better, exercise and reduce stress, individuals can do a better job of staying on the path of wellness."

Is that so?  By seeking approval for the Dexcom continuous glucose monitoring device, I am trying to stop as many of the fluctuations in my blood sugar control as I can.  I am also trying to safeguard my body against hypoglycemic unawareness, because my body does not recognize the symptoms of low blood sugar with any reliability.  I am also preparing for pregnancy and making these CGM efforts for my baby and my husband.  Proactive approach, no?  You would do well to be more proactive in preventing complications, instead of being reactive and paying for them later.

According to the paperwork you sent me, I have been advised that I have exhausted my internal appeals and may now file an external appeal for CGM coverage.  You have also told me that I need to enclose a check in the amount of $25.00 made out to the Treasurer, State of Connecticut.  This check is the first item on your appeal application checklist, showing me how committed you are to making this appeal process as difficult as possible.  

I have been a type 1 diabetic for almost 22 years.  The paramedics have visited my home due to morning hypoglycemia.  My A1c is currently above 7.5% and not within the range for pre-conception, as advised by my endocrinologist at Joslin.  I do not want to experience diabetes-related complications, and I am trying to stay as healthy as I can. I will continue to fight for approval of a CGM.

In the next week, your team will receive a letter from my endocrinologist, stating her recommendation for CGM coverage.  You will also receive my current blood work results, a copy of my certificate of coverage, and yes, my check for $25.00.

I look forward to your response.  

Best,

Kerri Morrone Sparling

July 29, 2008

CWD Meets CGM.

"The problems are that they aren't accurate all the time and they don't replace fingersticks."  She adjusted her shirt collar.  "It's tough for insurance companies to get on board with that."

It's no surprise that I attended every CGM focus group offered at CWD.  From discussions about government viewpoints with Arleen Pinkus of the FDA to debates about accuracy with Dr. Bruce Buckingham, I was tuned in and looking for ammo against my insurance company's repeated denials.  (Acknowledgment of my second appeal arrived in the mail while I was away.) 

When the group (which included Manny, Sara, and the man himself - Bennet) asked about insurance coverage, the FDA lady told us that there just wasn't enough data from the Medicare crowd.  

"So you're telling us that we just need to slap a few sensors on some 65 plus diabetics and that will help turn the tide?" I asked.

She actually said, "Yes.  That would do it."

Fight for your right to monitor!

Fortunately, the CGM session with Bruce Buckingham was far more informative and armed me with enough information for my third appeal letter.  He was a warm and soft-spoken man who lead a 90 minute session about CGMs and how they can benefit the life of someone with diabetes. 

"When I worked at the diabetes camps, they called me a pancreas, because my pancreas worked," he quipped to us, talking about the history of diabetes and explaining how physicians used to taste the urine of their patients to make a diagnosis.  "The first pump was in 1978.  The first common place meter was in 1980.  I know - the pump was before the meter!"  

Dr. Buckingham talked about how CGMs don't measure blood glucose, but instead measure the interstitial fluid.  He told us that it takes about six minutes for the blood glucose to affect the interstitial fluid measurements, which helps explain how CGMs and glucose meters don't always match up with precision.  He cited that the delay is more realistically a full eight minutes.

There was a lot of discussion about accuracy.  From my almost 22 years of experience with type 1 diabetes, I'm convinced that every mg/dl result is a concrete one.  It's been a tough mental hurdle, leaping from snapshots to trending.  But Dr. Buckingham confirmed yet again that a CGM is a trending, and not a treatment, device.  Any CGM result should be confirmed on a glucose meter before treating with food or insulin. 

Another point he touched upon was that of sensor calibration.  I test upwards of 15 times per day, so I was inclined to calibrate my sensor whenever I tested my blood sugar.  "Calibrating when unsteady can cause the sensor to be biased," Dr. Buckingham said.  If I test and my numbers are rapidly rising, I'm calibrating my sensor on the climb.  That's going to throw off the accuracy for sure.  Calibrating when steady (or at least steady-ish ... diabetes is never completely precise) helps retain the integrity of the sensor.  But there is always a lag time with subcutaneous sensors, i.e. recovery from a low blood sugar may not be apparent on a sensor in a timely fashion.

All these technical details were well and good, but I wanted information on what made someone a good candidate for a CGM (particularly in the eyes of insurance companies).  Dr. Buckingham provided a list of possible candidates:

  • patients at a high A1c
  • patients with a fear of hypoglycemia
  • hypoglycemic unawareness
  • pregnancy/preconception
  • gastroparesis
  • athletes
  • patients on medications like pramlintide (Symlin) and exenatide
  • patients who may wear the sensor intermittently to better understand their own diabetes

I saw myself on that list several times.  Dr. Buckingham told the group about how a CGM can provide fantastic feedback that can really affect diabetes management decisions.  He said that the immediacy of the feedback helps identify causality, meaning that we could see how different foods affect blood glucose levels, and that the data can be use to prevent or detect earlier extremes in glucose levels. 

He did have some warnings, though.  He warned about over-calibrating (as discussed before).  He also warned against insulin stacking (taking small bolus after small bolus in efforts to correct highs). He also acknowledged that some of the alarms weren't effective, and that many PWDs slept through them.  One tip he offered was to keep the CGM receiver in a glass on the bedside table, so that when it vibrates, the rattle in the glass helps wake you up.

"It doesn't work unless you wear it," he offered, adding that the sensor is a behavior modification tool and if you aren't ready to accept diabetes, you may not be ready to wear an extra device.  According to Dr. Buckingham, a CGM can make someone feel vulnerable and defensive, with every number out there on display.   

But then he said this:  "A CGM can help you achieve a better A1C without increasing hypoglycemia."  I thought about the lack of lows I've had in the past few months, and I was happy to not be crashing and burning in the middle of the night.  But an elevated A1C also came along without those lows to tip the curve.  I'm so hopeful that a CGM will help me gain better control of my diabetes without tossing my numbers down the well every few days.  

I thought about how Chris said he feels safer when I wear it.  My mom said the same thing.  And I agree.

Come on, Insurance Companies.  Get on board!!

Editor's Note:  Do you want to join the fight for CGM coverage?  Sign the CGM Denial Petition and Raise Your Voice!! Also, Dr. Bruce Buckingham is leading a chat about Continuous Glucose Monitors on DiabetesTalkFest tonight.  Log in at 9 pm EST!

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July 09, 2008

CGM: Denied Once Again.

Please approve my CGM!Dear Insurance Company,

I got your letter yesterday.  I opened it up and saw your second denial.

"Our Medical Director has decided to uphold the initial adverse determination because this monitoring system has not been proven to be any more effective in the management of diabetes mellitus than the standard monitoring."

I disagree.

I test my blood sugar 15 times per day.  I test when I wake up, before I eat, after I eat, before I exercise, while I exercise, before I sleep, and sometimes in the middle of the night.  I also test when I feel "off."  I try to catch the fluctuations as often as I can and I respond accordingly.  Unfortunately, I am only seeing snapshots with this "standard monitoring," instead of the streaming video I get from a CGM.  Maintaining tight control is difficult with only snapshots of information.

I got married two months ago and my husband and I are planning to start a family in the next year or so.  As a type 1 diabetic for over 21 years, preparing my body for baby is a bit of a daunting task.  My endocrinologist has told me to bring my A1C as close to 6% as possible.  I am starting the Pregnancy Clinic at Joslin at the end of the summer and am working hard to run my numbers tight.  Unfortunately, running at a tighter clip results in more low blood sugars. 

Sometimes I don't feel my low blood sugars.  I've felt perfectly fine and then tested to see a result of 38 mg/dl or 41 mg/dl or 45 mg/dl.  These are not safe numbers.  As a result of my efforts to lower my A1C, it takes longer for me to feel the lows.  I have hypoglycemic unawareness.  A CGM would keep me safer from these undetected lows.  And when I'm pregnant, it would protect me and my baby - at no extra cost to your company. 

And in January 2003, my then-boyfriend woke up to find me unresponsive and sweaty.  He tried to get me to drink juice but I fought him off.  The paramedics were called and it took three of them to hold me down and administer glucose.  After a tube of glucose gel, my blood sugar was 44 mg/dl.  Had my ex not woken up, discovered I was low, and called the paramedics, I may have died.  Let's just think about that for a minute, okay?  Dead, thanks to a low blood sugar that I did not wake up for.  A CGM would have warned me about my falling glucose with a loud and relentless BEEEEEEEP.  I would have woken up, tested, and most likely caught this low at 60 mg/dl instead of whatever low I achieved that morning.

While I believe that your company should respond to these issues on an empathetic and proactive level, you may only care about the financial aspects of this issue.  I offer the following:

The Dexcom unit I am using was given to me by the company.  You would not need to purchase the receiver unit or the transmitter at this time.  This is a savings of $1000.00.  What I am looking to cover is the cost of Dexcom sensors, which are $240 for four sensors.  Over the course of a year, these sensors would cost $2,880.

To offset this cost, I would be testing less frequently.  I would go from testing 15 times a day to approximately 7 times, saving $5.00 a day.  Over the course of a year, I would be using 2,920 less test strips.  With test strips costing approximately $1.00 apiece, this would be a savings of $2,920 per year. ... Wait a minute, that's saving more than the sensors are costing.  Looks like you guys just made $40, not to mention co-pays for these items! 

We should also factor in the cost of an ambulance ride, if I were to have another low that required assistance.  Medical intervention could cost upwards of $1,000.  The CGM is a measure that could prevent this cost from occurring.   

These are just the immediate cost savings to your company.  Never mind the savings that will accrue long-term, when my body remains healthy as a result of achieving a tight A1C instead of developing expensive diabetes-related complications.

Overall, it makes more financial sense to invest in a CGM for me.  Proactive measures will keep me from costing insurance companies large sums in the future, when more serious issues may arise as a result of several decades of diabetes.  

And, as an added bonus, I will be healthier.  Imagine that.

I am looking forward to your response.  

Sincerely,
Kerri Morrone Sparling 

July 02, 2008

Dexcom Tips.

Dexcom and an old Trot Nixon shirt.  Almost classic.Last Thursday, my local Dexcom teaching nurse came to visit me here at dLife.  I think she's fantastic, but I'm also tremendously biased.  Little back story:

When I was first diagnosed, I was a little peanut of a kid.  My parents had no experience with diabetes or how to handle type 1 being a part of their child's life, so they looked for help within our town.  As fate would have it, one of my father's cousins (one of those once-removed cousins added to the family by marriage sorts of things) had a son with diabetes.  Jim was diagnosed when he was 18 months old, his mother, Eleanor,  was a registered dietitian and had spent time as both a diabetes professional and the mother of a kid with diabetes.  Perfect guide for my parents, right?  Right.  For years, my mother and I traveled to Joslin with Eleanor and Jim for our back-to-back endocrinologist appointments.  And when my parents would go on vacation, I would stay with Eleanor and her family because she knew how to take care of me.

So imagine my surprise when I find out that the CT/RI Dexcom teaching nurse is Eleanor!  Holy small world.  And holy long story, sorry about that.

Anyway, Eleanor came to visit me last week and brought me two spare Dexcom sensors.  We covered a lot of the technical bits about Dexcom'ing, as well as some tricks o' the trade.  My session with Eleanor helps me answer some of the reader questions I've received over the past few weeks.  Like these:

Q:  Can the sensor get wet?  I used the Dex3 and had to wear the shower patches.  They were terrible!


Yes, the Dexcom 7 sensor can be worn in the shower and the pool and any other soggy environment.  You don't need to wear those wild shower patches that eat your dermis anymore.  But here's something I didn't know:  When you are ready to put a new sensor on, you should clean the underside of the transmitter with an alcohol swab or similar.  I thought you weren't supposed to get this transmitter wet at all, but it turns out that a good swabbing can remove any soap residue, body lotion, or other random smudgy bits that may worm their way underneath.  This cleaning process helps retain the integrity of the transmitter.  

Q:  I've seen you wearing the sensor on your arm.  Aren't you supposed to wear it on your abdomen?

Ahem - according to the official Dexcom guidebook, "Choose a site on a fatty area of your abdomen (belly) to place your Sensor.  You can choose a site above or below your beltline. The best insertion areas are usually flat, 'pinchable,' and relatively free from where rubbing can occur (i.e., pant line, seatbelts)."  However, and off the record, the sensor can be worn anywhere there is a good amount of fatty tissue so you can grab the ol' interstitial fluid easily.  For me, I have a lot of placement options.  I've been wearing the sensor on my arm because that keeps it away from my waistline (I hate wearing any of these devices on my abdomen) and doesn't encounter much friction throughout the day.

Q:  You always talk about how you want your diabetes to be "seamless" and you've talked about how you hide your insulin pump so that it's not part of your wardrobe. So, my question is, how come you don't wear your sensor on your stomach or thigh?


This reader caught my recent dLife column, where I talked about some people staring at the Dexcom sensor on my arm.  This is a very good question. I wear the Dexcom sensor on my arm because it stays put there best.  The sensor is less apt to become peeled back and doesn't catch on my waistband.  It is also less likely to become loose and therefore irritating.  I don't feel comfortable wearing any diabetes devices on my stomach, and my legs are too muscular for the sensor.  Also, the sensor needs to be away from any insulin pump infusion set and from big pockets of scartissue.  So ... my arm is the best out-of-the-way location for Dex and still have it working correctly.  I'm trying to find the compromise between "external symptom" and "using available technology."  People stare sometimes, which makes me bristle a bit, but I would probably stare, too.  It's a different look for your average twenty-something.  ;)

Q:  Can you get more than seven days from one sensor?  Or are you just sticking $60 on your arm, getting a week from it, and then ripping that $60 off?  I can't imagine!

I haven't had the opportunity to restart a Dex7 sensor because the past few have melted off me before the seven day point.  On this last sensor, Eleanor applied some SkinTac on the sensor gauze and it has held steady through daily showers, daily workouts, and this blasted heat.  I have heard that you can "re-queue" a sensor by "pretending" that you've installed a new one.  I will give this a go next round.

Any other CGM-type questions?  Send 'em to kerri (at) sixuntilme (dot) com. 

EDIT:  Again, comments are being problematic.  Hopefully they're fixed now.  I need a new webhost, damnit.  Thanks for letting me know, Rachel! 

July 01, 2008

CGMS: Denied.

I submitted the paperwork when I applied,
But my CGM coverage was flat-out denied.

All that we want is the option to choose
What kind of dManagement tools that we use.
The technology works and it's there, on our side.
So why would requests be rejected, denied?
It's not like we're asking to have legs removed.
Instead, we are hoping our health is improved!
It costs them some money, this investment in health
But of course it becomes more a question of wealth.
These machines could save lives - does that count more than cash?
Or would companies rather see us burn and crash?

I just want the option to sleep through the night
Without lows creeping up and holding me tight.
Or the chance to see graphs that show my sugar trends
So I know how to best tweak the insulin end.
I want to be healthy.  I want to be sure
That my numbers are stable, my safety secure.
I'm a daughter, a sister, a friend, and a wife.
The investment is small when compared to my life.
I enjoy some "good fun" and I'm healthy today
And a CGM tool can help keep me this way.

When it comes to our lives, there is a clear choice.
We deserve all the options.  We must raise our voice.

For more information, click here!
 

June 20, 2008

Dexcom, Batman, and Gaseous Emissions.

The Friday Six:  June 20, 2008 editionWelcome to this week's edition of The Friday Six - your source for diabetes information, random websites worth checking out, and the occasional fascinating game about farts.  (Because farts are perpetually funny, despite my best intentions to grow up and act like the adult I'm supposed to be.)  Consider it "brought."

Uno.Now that my insurance appeal letter has been sent, I'm in the 30-day waiting game that Oxford Health plays.  I'm hoping that I don't need to go through a second appeal process, but I'm assuming that will be the case.  So while I wait for a response from my insurance company, I'm compiling data.  I've officially switched over to the OneTouch UltraLink, so now every time I test, I hear the subsequent "beeeep" of my pump receiving and logging the result.  When I upload my data this weekend, I'll be able to see what my numbers were and how my boluses correlated.  I'm also pulling records from when the paramedics were called in 2003 for a hypoglycemic episode and my last string of A1C results.  When the insurance company comes back with a "no," I'll have an arsenal of information to offer up.

2.  Also, the diabetes community is indeed a tight one - this was proven to me beyond a shadow of a doubt this week.  While I was away on my honeymoon, the dLife CEO met with a Dexcom representative in our area.  While they were talking, it came out that I worked for dLife.  Turns out that the Dexcom rep was someone from my diabetes past.  This representative is the woman who used to baby-sit me when I was young, when my parents went away on vacation.  Her son is a type 1 diabetic and she was the person who guided me and my parents through those first tenuous years after diagnosis.  Now, she's my Dexcom rep, and she's coming to hang out with me next week to discuss the finer points of Dexcom'ing.  Small world, eh?

3.  In decidedly non-diabetes news, I came across a link yesterday that really brought out the grown-up in me.  It's a very serious online game that deals with such mature topics as gaseous emissions and space exploration.  In fact, PuzzleFarter was one of the most serious links I've ever sent around my office.  No, it did not make me giggle like a five year old, silly.  (Hat tip to my brother, who continues to find the oddest damn things on the internet.) 

4.  Another link I've come across in the last few days has been the one where people are recreating their childhood photos.  Have you seen this?  The pictures are part of a site called ColorWars 2008 and the pictures are the "YoungMe:NowMe."  I love this one.  It makes me happy.  And this one just plain makes me laugh.

5.  Tonight we'll be trekking back to RI to hang out with friends and family, and to celebrate Batman's birthday!!  My superhero friend is ringing in her big day tomorrow and this is the first time in seven years I haven't been able to buy her the new Harry Potter book for her birthday.  Strange rite of passage.  But if you are feeling like wishing a happy birthday to the Batman friend, feel free to leave her some love in the comments section.  :)

Six!And lastly, this one last website almost caused me to end up on the floor in shock.  Prior to today, I wasn't aware that cat sharks existed.  Now I know.  And knowing is terrifying. 

Have a good weekend, Blogosphere!  :D  See you on Monday.

June 18, 2008

Dexcom Days.

Thanks to the wonders of my pre-wedding disorganization, I managed to misplace a Dexcom sensor.  Luckily, I found it in the linen closet on Monday night and slapped it on.  Just in time to see some weirdo numbers, apparently. 

Since I've been back from my honeymoon, I've had some trouble getting my numbers back under control.  Seems like all the basals and ratios I was using as "Kerri Morrone" don't seem to work for "Kerri Sparling."  ;)  Thanks to the CGM big picture, I'm trying to isolate what's causing me to go high and low at different times.  Like the morning highs. 

Part of the reason for these highs has to be my morning shower routine.  I have a tendency to wake up, test my blood sugar, disconnect my pump, and then hop into the shower.  After the shower, I need to blow-dry my hair.  Then find something to wear.  (Notice I haven't mentioned reconnecting yet. Whoops.)  Suddenly, I realize that over 35 minutes have passed and I haven't been tethered.   

This wouldn't be such a big deal were it not for the fact that my morning basal rate is cranked up to 1.0u (vs. my normal 0.4u) between the hours of 6:30 am and 10:00 am.  Therefore, I'm losing over half a unit while I'm showering and getting dressed.  This insulin-skip causes my blood sugars to leap up around 9:00 am on some days, leaving me mucking around with a high until almost 11 am.  

"Armed" with the Dexcom 7.

Armed - literally - with the Dexcom, I was able to view this phenomenon first-hand yesterday.  Holy spike.  Today, I tried bolusing 0.3u before I disconnected for my shower, then taking another 0.7u once I reconnected.  The results were much better, and I'm hoping to see even better results tomorrow.  (Has anyone else worn a Dex sensor on their arm?  How did it work for you?  Getting it on there was a hassle, I'll admit.  Thank goodness for Chris's patience!)

Last night I was able to see my overnight patterns.  Dex woke me up at 3:00 am, hollering that I was 49 mg/dl.  I didn't feel low at all, so I tested to confirm the result.  My meter claimed I was 64 mg/dl.  Fourteen point spread, but close enough that the wake-up BEEEEEP! was timed early enough for me to catch the low before I hit the trenches.  I grabbed a swig of juice and checked the graph on Dex - sure enough, I had been falling for over an hour.  

It's very enlightening to have access to these patterns.  When before I thought my mornings were decent, baesd on a test at 7 am, 9:30 am, and 11 am, I'm now seeing that there is a significant amount of fluctuation between these snapshots.  I'm curious to see what the graphs show me tomorrow, when I tweak a bit further. 

And THANK YOU to everyone who offered their insurance battle feedback.  I'm in the 30-day waiting period now, compiling data and trying to follow everyone's suggestions to present my second appeal.  Thanks to Manny for his compelling video, and to everyone who is fighting this same fight.  The technology exists, and we should all be able to access it.

June 17, 2008

First-Level Appeal Letter re: Dexcom Denial.

Hear me.I received a letter today from Oxford Health Plans, denying my request for CGM coverage.  "Our Medical Director has determined that the request is:  Denied - Not Medically Necessary."

My First-Level Appeal letter is below.  This is the first round of a potentially long battle, but I'll see it through as far as I can, I promise.  A price tag on my health?  I don't think so.  Here's hoping they listen.

"June 17, 2008

Clinical Appeals Department
c/o Oxford Health Plans, Inc.
PO Box 7078
Bridgeport, CT  06601-7078

To Whom It May Concern:

On September 11, 1986, I was denied a normal childhood when I was diagnosed with type 1 diabetes.  My parents were taught to measure my food, test my blood sugar, and inject insulin into my body.  We were taught about diabetes complications and how they may end my life.  We were taught to plan for the worst and hope for the best.  This was my mortality, handed to me when I was just a child.

On January 27, 2003, I was denied the ability to control my blood sugars with insulin injections alone.  My medical team determined that my diabetes would be best controlled with an insulin pump instead of multiple daily injections.  Thanks to my hard-working medical team and my personal dedication to good health, I started using an insulin pump.  My A1Cs have been lowered and my risk of diabetes-related complications lessened, thanks to the benefit of this technology.

On April 15, 2006, I was denied the symptoms of a low blood sugar while I was at the movies.  Thanks to my years of hard work and my desire to keep my diabetes as well-controlled as possible, my body was less sensitive to the symptoms of low blood sugars.  Therefore, a blood sugar of 27 mg/dl snuck up on me without warning, leaving me moments from a diabetic coma.   Currently, I experience severe hypoglycemic unawareness, leaving my body at risk for potentially lethal, undetected low blood sugars.

On May 18, 2008, I was denied a wedding without diabetes.  Surrounded by friends and family, and with my husband-to-be standing proudly at the front of the church, I walked down the aisle.  My mother cried, later admitting she always feared I would not see this day in good health.  My blood sugar plummeted, without warning, before the first dance as a result of my excitement.  I did not feel the symptoms.  I spent my first dance with my husband clinging to his arm, trying to focus and waiting for the glucose tabs I had just eaten to raise my blood sugar.

On June 13, 2008, I was denied health insurance coverage for a continuous glucose monitor by Oxford Health Plans. 

I am twenty-nine years old and have spent more than two decades living with type 1 diabetes.  My wedding was barely a month ago.  I am so excited to start a family with my loving husband.  I will not be denied the chance to have a healthy pregnancy.  I will not let my mother be denied a good night’s sleep because she’s worried her daughter will have an undetected hypoglycemic episode in the middle of the night.  I will not let my husband be denied a healthy wife. 

A Dexcom continuous glucose monitoring system receiver costs $800. The sensors cost $240.00 for a pack of four.  Over the course of a year’s non-daily use, the Dexcom system will cost approximately $1,800.00.   

Compare this cost to that of laser surgery to treat diabetic retinopathy.  Or the cost for kidney dialysis or transplant.  Or the cost of daily medications to treat high blood pressure, cholesterol elevation, or kidney disease.  Or the cost of an amputation, as well as any attendant costs for rehabilitation and lifestyle adjustment.   Please be advised that keeping me healthy now will save your company from greater expense later; preventative measures taken at the present time will mitigate the overall financial loss your company would otherwise incur in the future. 

Denying my claim to protect your company’s bottom line is to deny my chance for a long and healthy life. You have marked my claim as 'not medically necessary.'  You have boldly put a price tag on my health. 

Your denial may cost me my life.  I urge you to reconsider your decision.

Sincerely,
Kerri Morrone Sparling"

June 16, 2008

You Wouldn't Like Me When I'm Low.

You wouldn't like me when I'm low.  Or maybe you would.

While we waited for the traffic to disperse this past Friday night, we went to see The Incredible Hulk.

So Ed Norton (who I love ... loved him in Fight Club and The Illusionist) plays The Hulk and spends the better part of the beginning of the movie trying to keep his rage under control because ... you know ... you wouldn't like him when he's angry.  He wears a heart rate monitor to help keep him safe and controlled.  It's one of those wristwatch bits that beeps as his heart rate climbs and wails insistently when his numbers are too high.

"Dude,"  I lean in to Chris.  "I didn't know the Hulk wore a CGM!"

He whispered back, "I know!  I thought the same thing!"

The movie continued, and Ed Norton finally loses it and becomes The Hulk.  After his episode is over, he's shivering, weak, and holding his tattered pants close to his body.  He looks completely spent and in need of a solid nap.  Much like how I feel after a wicked low blood sugar.

"Only minus the tattered pants part," I explained to Chris after the movie.  

It's strange how movies depict diabetes.  I remember watching Panic Room and seeing the little girl experience a hypoglycemic episode.  She was blue-lipped and sweaty, lying helplessly on the floor while her mother scrambled for sugar.  But I didn't see myself in this Panic Room character, even though she was written as a diabetic and her symptoms were "appropriate." 

Instead, I empathized more with The Hulk as he closely monitored his heart rate, those numbers taking precedence over all other things, their fluctuations determining many of his actions.  And I felt a pang of recognition when he came to after an "episode," bewildered and fragile and not knowing quite what happened. There are strange bits of empathy and recognition found in the most unlikely of places.

I bet if The Hulk needed a CGM, insurance companies wouldn't deny him.

"Hulk smash ... insurance companies!"

June 13, 2008

The Long Road Towards Insurance Coverage.

Pay to keep me healthy?  Or pay when I am sick?  Your call.(This is a loooong post.  And contains many terms that I just learned today.) 

Dexcom and I are looking forward to being reunited (out of sensors at the moment), but before we can do our Dex-y dance again, I need to get this stuff covered by my insurance plan.  My contact at Dexcom put me in touch with their insurance management team, and they've been working hard to get the proverbial ball rolling.

I spoke with one of the reps earlier in the week.  She was very hopeful about insurance coverage, telling me she'd start processing the claim through Oxford Health (they are my insurance provider) and would touch base with me with the good news.  I laughed.

"Good news?  Let's be honest.  There's rarely ever any good news when it comes to insurance ... anything.  So let's assume they'll reject it, and we'll create a battle plan from there."

She laughed.

"Right.  A battle plan!  I'll contact you as soon as I have any new information."

True to their word, an email came in from Dexcom yesterday. 

"Hi Kerri,
We have not had any luck in getting other patients thr