It's been awhile

Ready for new content? I'll be reformatting the blog in the months to come and adding new info and thoughts. In the meantime, additional resources can be found at touchedbytype1.org 

Raising Money while Lowering Blood Sugar

Our local chapter of JDRF held its' charity gala this past weekend. While this was their 10th annual Imagine Gala, this was our first time attending. We were blessed to be invited to a corporate sponsor table (Charles Schwab for the win!). I was thrilled to be attending, and my husband and I got all dolled up to attend a special "grown-ups" night. I had a new dress, did my hair and makeup, my husband Youtube'd how to tie a tie properly. We drove the 45 minutes to the venue, the lovely Loews Portofino Bay. Let me tell you, what a nice event. Silk aerialists, live band, Dr. Nicole Johnson, a fast-paced live auction.

What I wasn't expecting in all this glitz and glamour was that my daughter would have some kind of excitement, adrenaline, or otherwise freak occurrence with her blood sugars while we were gone. While eating the first course, I get a text from my mother (our babysitter for the night), saying that M's BG was 440. Crud, what did she have for dinner (PB&J). Did she get the proper dose via the pump? Did we give her a proper pre-bolus time for white bread? We hadn't checked the Nightscout yet to realize that her blood sugars were going off the charts (parent fail). My husband walks my mother through giving insulin on the new pump and we finish our course. 20 minutes later my mother is calling me to tell me that her blood sugar is now 561! That is literally the highest reading she's ever had, diagnosis included. My husband is ready to ditch the gala and go home, but I know that it's a long drive home and immediate action is needed. So I step out of the room, leaving my sea bass dinner behind, and walk her through the steps to give a manual injection, something we haven't had to do in over 3 years. My poor mother had to deal with a crying M, who doesn't remember the MDI days and only knows it's a "shot". Then she has to check blood ketones, which apparently throws her threw a loop because she doesn't realize there are separate meters for ketones vs. our normal BG checks. After figuring out why the "meter" isn't accepting the strip, we get it sorted out and luckily there are no ketones yet. My sea bass is gone from the table,  I owe my daughter a new toy, but at least we have the insulin on board. Crisis averted?

Fast-forward to one hour later. A blip in time, and my mom texts to tell us that my daughter's BG is 158 already, with over 2 units of insulin on board still. Nightscout is down for some reason, so we can't see the trend ourselves. So now it's the scramble to give her a meals worth of carbs to make sure she doesn't crash into a low. $650,000 later, the gala is ending and we head home to relieve my mom. A report of a 68 means even more juice. We get home and end up giving her even more carbs to get her through the night.

It's nights like these, while literally trying to raise money for this disease, that remind us WHY it is so important to forge on towards a cure. 

Changing Pumps

T1D parents know heartbreak, it's practically a certificate that is handed to you the day your child is diagnosed. There are additional little heartaches throughout the years....those times that your child is too high and can't have a particular treat, the times that a pump site fails early and you unexpectedly have to change a site on a crying child, the nights you have to wake your sleeping child to ingest sugars so that they can survive the night.

But we recently encountered one that made my heart shear a bit more. Our first case of bullying.

In this case, it was due to her pump. My daughter is 5 and is currently in Kindergarten. Although her class is very supportive (the teacher's own kid has T1D), unfortunately she is exposed to other, older children who have not been taught about T1D. So at P.E., she told us that she was being called names by 2nd graders. The standout of those names was "octo-tube". (I can't go harass all the kids at the school for hurting my daughter's feelings y'all. Well, I could, but I choose not to because I want to be able to step foot on the school campus.) She was on the Animas Ping, which to that point 3+ years in, had been a great pump to us. We had originally looked at the tubeless Omnipod, but at 24 months old, her basal rates were not high enough for their minimum basal rates. The Ping was fantastic with its' remote so we didn't have to hold down a child to give insulin doses. It was waterproof, it was able to give those microdoses, it was pink. But what it wasn't was as invisible as my daughter wished it to be. Her little fanny pack holding the pump was ever present, and her tube was often found circling her waist. I wouldn't change our decision to go with it because it was what we needed at the time. But M is now old enough to understand more about the disease, more about social interactions, more about shame and humiliation. She expressed that she liked the Omnipod that she was seeing other girls in a local diabetes group have. She liked that there was no tube and that she could hide it under clothes if she wanted to.

I can't change diabetes, but this was something I COULD change.

So I did. I "cut the cord". I cancelled the pending order for Animas supplies. I called her insurance company to check for any limitations in coverage for Omnipod. I called Omnipod and filled out the benefits check. Within a week, I had the Omnipod sitting in my hands, and a week after that, we had pump class with the endo's office and were active on it. The cost? $199.99 with Omnipod's special program for people like us wanting to switch to tubeless while they have an active warranty for a tubed pump. We have 8 months left on our warranty with Animas (and had just recently been issued a replacement due to some screen issues), so now we have a warrantied pump through Omnipod for 2 years, which will bring us into the end of 2018. I am hoping that (real) Artificial Pancreas's will be FDA approved for her age by then and we can use our insurance to purchase one. (No Medtronic, your 670g is NOT a "real" AP).

 Of course I had to immediately paint the pods. Because I have a nail polish addiction (thanks Julep!), I had a ton of colors. Add in some stickers, and I had a somewhat cute collection to get her started. I was able to surprise her after school, and she got in on helping to paint a few as well. I also discovered I am not as good of an artist as I thought :/

No Vacation from Diabetes

A year and a half ago, we booked a bucket-list trip to Alaska. Being from Florida, we hadn't traveled so far for a vacation or been somewhere quite as cold. We got lucky and were able to travel with my mother, as well as my best friend and her family. In fact, we were able to get aft balcony cabins side by side right on the back of the boat. A charmed life it seems, until you factor in the unwanted tag-along guest, diabetes. Airport security is a nightmare as I receive pat down after pat down and scolds for bringing liquids. I am within our rights to bring shelf-stable milk to get my daughter through a 6 hour flight, but apparently this is inconvenient for TSA to check and I should have brought open containers instead. (Yes, let me then have to bring ice packs, a cooler, additional bottles, etc just so you can save yourself the hassle of processing a swab sample). Thankfully the flight is fairly uneventful and we land on time. (A whole other story about the trip home with lightning delays).

Once in Seattle, we hop on the Link, go check into our hotel, and head out to explore. We end up in the Pike Place market, and sit down to eat. I see M acting tired and decide to refrain from pre-bolusing her meal. Score 1 for mom intuition! She crashes while we are waiting for our food. As in, could pick her head up off the table and it would fall down kind-of crash. She ends up having to be carried throughout the marketplace and sleeps for over an hour. All I could think about was thank goodness we didn't bolus her for all those carbs, because she was out-out.

Our first port stop is in Juneau, AK, where I've booked a canoe trip on Lake Medenhall, where we will paddle up to Medenhall Glacier and get an up-close view, as well as Nugget Falls. Of course being a 5 year old diabetic, M ends up having to go to the bathroom at our Nugget Falls pit stop, so we teach her the intricacies of pottying over the side of a rock.

Nugget Falls

During our paddling session, my husband realizes that her Contigo water bottle has worked its way out of his pocket and dropped off the side of the canoe....somewhere.in.the.lake. M starts to freak out about how she won't have her water bottle to lower her blood sugars. I mean, why is this fair in life that those are the worries for my 5 year old? Even after assuring her that we will get a new one ASAP, she continues to scold her father about losing it. I let the guide know to keep an eye out for it on the off-chance we come across it somehow on our way back, but considering the size of the lake, know it's a lost cause. Close to shore, we see an otter, which is extremely rare because the silt from the glacier makes this an inhospitable environment for life, so nothing grows. If nothing grows, there is no food, and no food chain. But once in awhile a salmon makes it from an adjoining river, and the otter follows, and we get a sighting like we did. We land on shore, take off our gear, and start to walk back to the bus when the guide runs up to us to let us know that our water bottle has magically appeared on the shoreline. My 5 year old is now convinced that the otter brought it back to her. (More likely a kayaker, but whatever).

Lake Medenhall

While on the cruise, we decide to take M to the kid's club. They give phones to parents of D kids, so that they can tell us to come back if needed. So of course, this happens nearly every time we drop her off. We have to pull her out, give her a snack, let her go back in.

Staving off a possible low

On our trip into Ketchikan to ship home some fish, we have a low.

On our car trip into the Yukon, we have a million potty breaks, some of which are without real bathrooms again. My mom gets to introduce her to camping mode.

British Columbia/Yukon Territory

This was our first real vacation with M since her diagnosis almost 4 years ago. I felt so intimidated by traveling with D on board, and couldn't justify the cost of a trip when I wasn't sure if we would be able to enjoy ourselves. But this trip changed our minds. Although we didn't get a vacation from diabetes, we got away from the day to day stressors of every other part of life, to make this the trip of a lifetime. It was cold, but we didn't have any insulin issues. TSA stinks, but we made our flights. We needed lots of insulin, but my daughter ate everything she wanted on the ship, and ran those servers with her demands of yogurt and ice cream. She loved the kids club, and I was even able to sneak away for a few hours to go read in the library. Sure, we had an entire bag just dedicated to our D supplies, but what's an extra bag when you can have a view like this?

Johns Hopkins Glacier, Glacier Bay

Appeals Help is Gaining Steam

Things are rapidly picking up on the diabetes insurance denial advocacy front. I've recently had a few opportunities to contribute my knowledge about insurance denials and appeals. 

The first thing is to thank d-mom Faye Kolly for bringing awareness to the plight of denied T1D medical equipment and how this is an outrage to our T1D kids. While I was packing for L.A. to go to the Dexcom commercial shoot, I was alerted by my "network" that Faye's 2 year old daughter Esme had been denied a CGM AND a pump. I was able to complete an appeal letter while Faye simultaneously rallied the diabetes community into action. She was helped along in part by Beyondtype1.org's co-founder Sarah Lucas, who helped spread the word to Beyond's followers that they should contact Humana to report this injustice. Read more about Esme's fight HERE.  Long story short, Esme was approved for both items upon external appeal. Soon after, Beyond Type 1 contacted me regarding gaining info on fighting denials, and now has their first insurance help guide: Navigating Denials. 

Being a part of their story led me to Scott Benner over at Arden's Day. Scott's podcast, the Juicebox, tackles the pertinent issues surrounding T1 diabetes and has thousands of listeners per month. He was generous enough to invite me on as his guest for episode #61 and write a guest blog post: 10 Steps to Take After Your Insurance Company Denies an Insulin Pump or CGM, which spins off of the podcast info. 




There may or may not be commentary on the United Healthcare (UHC) and Medtronic insulin pump deal within the podcast episode. Oops. Did I mention earlier that the diabetes community tends to band together to fight injustices??

Hollywood Starlets!

I have repeatedly said it, but guess what?! I LOVE Dexcom! Recently we (my daughter M and I) were given the opportunity to apply to be on their new commercial, to air in June 2016. Phase after phase we passed, until we got the final notification that we were selected to appear in the commercial! 

Within a week, we flew from our home in Florida to Los Angeles, a tidy little 5 hour non-stop flight with a 4 year old. Yippee!! We were shuttled to our hotel, the W in Hollywood, which was so.very.nice, so it was a treat to stay there. 

The W in Hollywood

That night, I met the rest of the patients who would be appearing in the commercial, other testimonials, some of the production team, and a few Dexcom employees. One of these employees was Mike Bloom, VP of Global Marketing. It was meeting him that truly helped my love for Dexcom grow. He spoke of patients being on a CGM system, regardless of whether it is Dexcom or not. I questioned him, thinking it seemed counter-intuitive for someone in charge of marketing a specific CGM to be advocating for the use of ANY CGM. But that is the kind of people at Dexcom, ones who care more about what is best for the patient than the bottom line. Sure, it's great if the patient chooses Dexcom, but he emphasized that any CGM is better than none. And that right there folks is a class-act. 

Then he said music to my ears - "I'd love to put you in touch with the Dexcom insurance team to talk about how to improve appeals." This would be a collaboration where we might learn from each other in order to help a larger amount of people gain approval for this life-changing device, so of course I jumped all over the opportunity. From my earlier posts, you know that I am a heavy advocate for insurance appeal help. In the week surrounding the trip I completed 8 insurance appeals for others, in addition to several more guidance sessions where I was able to point the patient towards getting coverage without needing an appeal. In just one week, with just one single volunteer. Imagine all the others who don't go online, who don't ask for help, who don't happen to get referred to me, who don't know that appealing can work! This is literally the tip of the iceberg for those needing help, so the opportunity to talk to Dexcom on a peer-to-peer basis about improving coverage for others is something I desperately wished for but didn't think would/could happen. 

The following day was the commercial shoot, whereas M was attacked by a horde of ants in her pants. This girl was so amped up that she literally would not stay still! So if you see a little girl in the Dexcom commercial that won't stop wiggling, just know that she was only 4 and was more interested in the ball off-camera than standing next to her boring mother! She was also enamored of fellow Dexcom Warrior Katelyn Prominski, who is a professional dancer with T1D.....and who was dancing in the shoot... and therefore M decided she'd also like to dance around during the shoot - haha!

While in studio, Kris Freeman, Olympic cross-country skier arrived to film, so of course I had to get a photo op with this T1D star! M was over it by that point, so grabbed her for a quick photo before running to catch our ride back to the hotel.

Kris Freeman, Olympian

After we were done with the shoot, we were able to spend the rest of the time in L.A. having fun. For a parent alone with a 4 year old over 2,500 miles away from home, this was basically spent riding the Metro, walking the Hollywood Walk of Fame, going to Trader Joe's & Starbucks way too many times, and being pulled into any store that happened to have a Disney character in the window. Of course there was a Dexcom and a pump site change while there, so I had to get a bit creative with the cold packs. Mini-fridge was stocked, so grabbed a cold bottle of Moet & Chandon and voila! success! 

All in all, this experience was amazing. The Dexcom and Hawthorne Direct (production company) treated M like a little star, which for a 4 year old was beyond thrilling. It was nice to have the focus of her having Type 1 diabetes be a positive experience for once. A special thank you to Dexcom for giving real users of their product a chance to show our love and appreciation for this life-changing device!


Updated: The commercial is out!! Direct link on the Dexcom website

Or view it here:

For more information on Dexcom, visit www.dexcom.com. 

Selecting New Insurance

Open enrollment can be a confusing time. We recently had a rate increase with our insurance so I made my own spreadsheet of insurance choices. A few others were in the same boat so I shared this with them and now you. My daughter had the Blue Options 1424P plan and now has the Blue Select 1535P plan. This is how "I" compared.

My breakdown is as follows: (*See Disclaimer at the Bottom of Page) 

Woah, craziness huh?!  Here is the key to this:  The yellow and green sections at the top are basically the same plans, except Blue Select is a different network than Blue Options. Blue Select is a smaller network and saves big on monthly premiums. (The blue highlighted has a Blue Options comparative plan but wasn't one I was focusing on). I found that my daughter's pediatrician, pediatric endocrinologist, CGM supplier, and local children's hospital were all now providers for the Blue Select network, so it no longer made sense to continue paying higher premiums for the Blue Options network. 

What does all this mean?!?

Terminology Basics:

• Deductible is the amount of money certain plans charge out of pocket before coverage starts on certain benefits. If a family deductible is indicated, this means that if 2 people met their family deductible and the third person on the same plan went to use their benefits, they would not have a deductible because the plan capped it (example $800/$1600. Person 1: $800; Person 2: $800. Equals $1,600, so if Person 3 had to use benefits requiring a deductible, it would show as already having met the family deductible and there would not be a deductible charge for that Person 3. However, co-insurance may still apply if Family Out of Pocket Maximums were not yet met.)
• Co-insurance is the percentage of the negotiated/adjusted bill that you'd be responsible for (up to your out of pocket maximum). 
• Out of pocket maximum individual: The most that (utilizing in-network providers, brands, etc) that you would pay out of pocket, not including yearly premiums. This is a single person.
• Out of pocket maximum family: If multiple people were on the same plan and each had a BAD year, this is the most that family would be paying out of pocket, besides premiums. 
• The "P" at the end of these plans stands for Pediatric, which means that these plans have pediatric dental and vision included for $0 for most items. (All of these particular plans offer most items at $0 so I did not do a complete breakdown of benefits, but these include glasses, exams, cleanings, fillings, dental x-rays, etc.)
• All information was gathered from the insurance website. (In this case bcbsfl.com)

I posted a few icons on the side of the breakdown picture: 

• Green key: 1st visit is $X; 2+ = any subsequent visits are $X
• Blue crosshairs: There is a maximum on some of the plans for 3 days. So there is a co-pay of $X per day, up to 3 days worth of co-pays, after which there are no additional co-pays per day. 
• Purple arrow: The DME category is extremely important for type 1 diabetics who intend to receive any sort of pump or CGM equipment while on the plan. Always review this area for coverage details prior to selecting a plan. These plans all show $0, which mean that a member would receive a pump, pump supplies, CGM, and CGM supplies for $0. No deductibles, co-pays, or co-insurance. 
• Yellow star: The * next to $20 indicates that this plan has a Condition Care RX program, which gives reduced co-pays on medications for certain chronic conditions, including diabetes. Meaning that instead of the normal $40 co-pay for preferred brand RX, preferred brand diabetes medications would only be $20. You'll also notice that there is a 3 month mail order in place for diabetes RX's as well, for a reduced co-pay of $38 (3 months), which can save you $22 per 3 months per RX. *UPDATE 2/29/16: I ordered under the 1535P and found that this plan does not offer the Condition Care RX program anymore like 1424P does. The copays are $50 per 3 months (tested on insulin and strips) but I found that it went down to $36 for lancets. So a bit more for a few plans than anticipated but nothing that would sway choices in other directions. As always, verify coverage prior to enrolling in any plan. Condition Care RX is something not always advertised so apparently I missed that it was not the same as before. My apologies!

Scenarios: (Yes, I was thorough and had even more non-diabetic scenarios but limited it here for target audience purposes). Scenarios are how you get plans to make sense. You can look at a few plans and see a scary 40% co-insurance, but how often would that even apply?  Maybe it's a difference between the higher deductible plan with lower premiums vs. a higher premium plan with lower deductibles. Scenarios are the best way to make that decision of risk vs. benefit for what you anticipate your needs to be in any given year, along with a few years of increased expenses. 



Scenario 2 (really is first one shown here, sorry!):  I want to point out that these are estimated costs and number of visits, everyone would be different. Locations, hospitals, negotiated rates, premiums, everything VARIES per person. This was for MY daughter but is the guideline of how to create your own basic spreadsheets. 

• Yearly: Monthly premiums times 12 months. Remember that these do not count towards out of pocket maximums. 
• Deducible/Coinsurance/Out of Pocket Max's: Recap of the plan benefits
• PCP: Primary Care Physician. This scenario estimates 2 sick-day (not preventative) visits to PCP. 
• Specialist: assumes 6 visits to the specialist (IE: endocrinologist, increased from normal year due to DKA follow-ups etc). 
• Labs: Assumes yearly maintenance labs were completed at an independent participating lab (such as Labcorp/Quest). 
• Inpt Hospital/Physician: 2 days spent in-patient hospital for a negotiated rate of $20,000. (This is quite high but covers nationwide fluctuations). 
• DME: Assumes Dexcom CGM Kit (1 receiver; 2 transmitters) and CGM supplies/ Pump supplies for 12 months. If getting a new pump, would still have been covered for $0.
• RX's: 12 months of Insulin (this is assuming pump, which is bolus only); Strips; and Lancets are mail order under this plans Condition Care RX program, which means that 3 months is discounted to $38. So for a year's worth, it would be refilled 4x at $38 per script, times those 3 scripts. Non-pumpers would have their basal insulin in addition to this. Glucagon: I did an assumption of 2 per year, filled at retail pharmacy but still under the Condition Care RX program for a discounted co-pay (but didn't add in the second refill co-pay, this is a mistake but for the time and effort of making this picture wasn't worth fixing it.)

I then compared each category involved and the assumptions made. I will breakdown the first two plans for comparison. 

Blue Select 1535P: Yearly premiums are $2,904. Visiting the PCP twice for non-preventative visits are a $25 co-pay each time, so $50 total. Visiting the specialist 6 times means a $60 co-pay each time, for a total of $360. This plan has an in-patient hospital co-pay of $600 per day (up to 3 days max), which means a 2 day hospital stay would be $1,200. Preferred RX for glucagon is a $20 co-pay per fill (yes, I miscalculated here, add $20 or assume only 1 glucagon was filled that year). Filled 3 scripts via mail order pharmacy 4 times that year, for a total of $456. All CGM and pump supplies are covered for $0. The out of pocket maximum was not met. This plan meant an estimated cost of $5,010 (or $5,030 with second glucagon). 

Blue Select 1451P: Yearly premiums are $3,252. Visiting the PCP twice for non-preventative visits are a $0 co-pay each time, because the first 3 sick visits to PCP under this plan are no co-pay. This plan has an in-patient hospital deductible of $800 plus 10% coinsurance. Assuming the negotiated rate of the stay is $20,000, that means: $20,000 minus $800 is $19,200. $19,200 times 10% is $1,920. Add back in the $800, for a total hospital bill of $2,720. However, the out of pocket maximum is only $2,500 so this is the maximum you'd be spending out of pocket (assuming you were using in-network everything).  (Visiting the specialist 6 times means a $20 co-pay each time, for a total of $120. Preferred RX for glucagon is a $20 co-pay per fill (yes, I miscalculated here, but assume only 1 glucagon was filled that year). Filled 3 scripts via mail order pharmacy 4 times that year, for a total of $456. BUT ---there are actually no co-pays for any of these because out of pocket maximum was met with hospitalization. This assumes it occurred before any of these co-pays were paid, otherwise the overall idea is the same but the payments would be spread out through the specialist/pharmacy etc and the hospital would just collect less from you) All CGM and pump supplies are covered for $0. This plan meant an estimated cost of $5,752. 

The Blue Select 1457P plan yearly cost in this scenario estimated $4,732; Blue Options 1505P estimated at $5,938; and Blue Options 1424P estimated at $5,860. The winner here is the Blue Select 1457P plan when basing the plan benefits on a scenario such as this.

However, you need to account for if this is the norm vs. an abnormal year. Scenario 3 (really the second shown) shows a typical year with normal endocrinology visits and supplies, without hospitalization. For a normal, healthy year, the Blue Select 1535P plan was the winner. 

Because my daughter was switching from the Blue Options 1424P plan to the Blue Select 1535P plan, we saved an estimated $1,460 PER year. By not being complacent and accepting the rate increase and staying with the same 1424P plan, we save $6,690 in a scenario 5 year period (assuming 1 year of hospitalization scenario and 4 maintenance years). We save even more if she remains healthy during those same 5 years. 

The difference between the hospital DKA scenario and the normal year scenario for the two "winners" was only around $275 (Plans 1535P vs 1457P). So for our family, in risk analysis, it was worth the gamble of $275 in a hospital scenario (non-probable) in order to automatically save $330 per year by choosing the 1535P plan over the 1457P plan. In a 5 year period, if we "win" $330 (assuming stagnate rates etc) in 4 of the 5 years, we still come out ahead over a thousand dollars over that period, just by choosing the plan that makes more sense for us and previous health indications.  


This guide is helpful if you are needing help deciding between group insurance plans, individual plans, COBRA insurance vs. individual plans, or when there are rate increases, benefit changes, employer contribution changes, etc. It is geared towards a type 1 diabetic, but the principles can be used by non-type 1's as well. 


*Disclaimers: I am not an insurance agent or authorized representative of any insurance company, etc. All information should be verified prior to enrolling in any health insurance. Prices are based on a child-only individual policy without subsidies for Florida Blue for a four year old child with information found on bcbsfl.com. Any mistakes are my own.  A child-only policy typically is an individual plan that is found directly with the insurance provider and may not qualify for subsidies. These are not government plans such as Medicaid/Medicare and rates can change at any time and all benefits are subject to the written terms of the plan, including limitations and exclusions. Increased usage of the plans may result in additional charges up to the out of pocket maximums. Not all plans found in the United States offer prescription co-pays under their maximum out of pocket umbrella and you may need to calculate them above and beyond any out of pocket maximums. This is especially important if you are on any specialty drugs (such as for cancer, HIV, hepatitis, etc.) Your personal insurance agent or HR representative should be able to provide more details about your plan options. Not all plans cover pumps or CGM's (and supplies) under DME or at all, as they may be subject to limitations, exclusions, or pharmacy benefits. Check all benefits carefully prior to selecting/enrolling.