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 post10 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. 


Watching Siblings Like a Hawk

My T1 daughter was diagnosed just shy of 23 months old. Her symptoms started just after she turned 22 months old and while I realize she was little, I didn't truly think about HOW little until my other daughter turned 22 months old. I look at this little body and can't imagine doing all the things we had to do for our other daughter. Perhaps its because we HAD to do them no matter what? Maybe I stuffed my guilt far enough down that 2 years later I've mentally put a block on the worst of it?

But then I start thinking....my other daughter is now at the age my first daughter was when she was diagnosed. Has the waiting game started? Is it only a matter of time before she becomes diabetic as well? It was almost a mini-mourning session again for me as my 2nd daughter turned 22 months old. This past month the thought continually runs through my mind, what if? What if my other daughter is diagnosed soon?

In some ways, watching my second grow up will be a lot of firsts for me. She already is speaking 15x more than my first daughter did at this age, simply because she's had the glucose available for learning new things. So far, she won't have to worry about extra potty breaks, needles, soaking her bed, sleepovers, babysitters, carb counting, eating foods in the best order for minimizing blood sugar spikes, waiting for food until insulin peak time matches, cannulas, Dexcom alerts, school issues, etc. She is young and carefree and in her I get to experience parenting a young and carefree child.

Yet, there are a lot of emotions when I think about my second daughter:
  • Happiness, because (right now) I don't have to worry about her dealing with the multitude of issues that come with daily diabetes care, both for her sake and mine. I know that when she gets sick, it isn't potentially life-threatening. I know the medical expenses aren't going to add up every single year, that I can send her to school and not worry about her. If I needed to, I could find a daycare who would accept her easily, or find a babysitter for her without an in-depth training session first.
  • Guilt, in part because of my happiness. I feel guilty for feeling so happy that I have a "normal" child without special needs. Diabetes is just.so.hard., and I need a respite sometimes. But to get that respite in the form of a child of mine that doesn't require 24/7 care? G.U.I.L.T.  I feel like I will be slapped any moment with a crimson letter to wear for feeling these traitorous thoughts. I love my T1D child. I love every little piece of her. A diagnosis would never change that. But does that mean I don't wish she never had it? What parent would ever choose this for their child? Every parent awaits that day our children will be cured.
  • Fear. Oh the fear. This is the part that has me questioning everything. Did she just ask for extra juice/water? Is that a diaper rash? Does her diaper feel extra soaked this morning? Is she getting sick? (IE: Did the trigger event happen?). Maybe I should just check her blood just in case. An 84 for fasting, score!!! (Back to happiness, then guilt). But I will continue to Watch.Her.Like.a.Hawk. Always.
  • Hope, there is always, always the hope that she will not be part of the statistic that shows an increased risk for siblings of a T1 child to also be diagnosed with it. Most parents hope for many things for their children, but having their top hope be that their child doesn't receive a life-long disability generally isn't one of them. In our house though, this is an actual thing. I HOPE with every piece of my being, that she doesn't have to go through what her sister does. I can't protect her from it, I can't stop it from happening, but I can certainly carry hope that she'll never get it.
  • Empathy, for my T1D who now has a little sister who is different than her. She will watch her sister not receive the pump changes, Dexcom sites, finger pricks, or have to count (or wait for) her food. The diabetes stigma won't be there and she won't have to sit on the sidelines waiting for a blood sugar to come up or go home early because she has ketones. I also feel empathy for my non-diabetic child, because of the attention that is bestowed on my T1D. I already feel badly how much attention my husband gave our first born vs. our second. My daughter was diagnosed when I was pregnant, so my husband made it his mission to shower our first with all his attention while I nursed and cared for the newborn. Except now my youngest is nearly 2, and my first still gets the lions share of the attention. It's not on purpose. Think about how they always say that the first will have a million pictures taken of them, while the subsequent children are lucky to have a single album. It's so true but add to that a medical diagnosis that forces you to focus on medical care 4-8x per day for one and not the other, and the attention (even if it's not all daisy-chains and sunshine) starts to stack up unevenly. We are aware and try to make it right, but there is a reason a lot of d-parents are referred to as helicopter parents to our d-children.
So for now I will continue feeling this way, who knows for how long. I'm resigned to the fact that it could happen, and my other daughter could be diagnosed. We are finished having children, in part because T1D is as time consuming and expensive as having a third. Right now 50% of my children have special needs and all it takes is one more diagnosis to jump to 100%. I am going to actively try to not think about this everyday or every week, but I know myself and will be grabbing that meter whenever there is a possible symptom. To all the parents with more than one diabetic, I SALUTE you. R-E-S-P-E-C-T. But I hope that I never, ever join your ranks (just as I know that you hope I never do either).


The Worst Kind of Post

This past weekend was a major blow to the Type 1 Diabetes Community. We lost two little kids to complications from undiagnosed type 1 diabetes. One was Kycie Terry, 5, who suffered a traumatic brain injury due to brain swelling from DKA (Diabetic Ketoacidosis) in January 2015 and succumbed to complications on July 11, 2015. A day later, we learned of David Brown, 4, whose DKA case was too advanced and he succumbed within days of initial diagnosis.
Unfortunately, these two cases are just the latest in a long line of undiagnosed children becoming casualties due to a lack of awareness of Type 1 Diabetes symptoms, and a tendency for doctors to avoid looking for the "zebra" amongst the horses (flu, bladder infection, viral infections, stomach viruses, asthma, sinus infections, UTI's, dehydration, anxiety). Here is a video from the parents of Rocco Kuehl, a Florida boy who had just celebrated his 1st birthday. His parents have set up a charity Drive for Diabetes Awareness in his honor to raise awareness of type 1 diabetes. It is heartbreaking to hear these preventable stories.

Something has to give. Over 1.25 million Americans live with Type 1 diabetes, and the rates are growing at a staggering percentage. There is no known cause or cure. Type 1 diabetes is too often a "silent killer" of not only youths, but also adults. This is not type 2 diabetes, and this is not something to laugh about.
How is it possible that so many people are still dying in a first-world country from a condition that can be diagnosed for pennies??  Doctors will swab for sore throats, urine is collected for UTI's, ears are checked for possible ear infections. Why are we not checking glucose with a single drop of blood or a urine dipstick for kids who present with these symptoms? Flu-like symptoms in diabetics means they are already progressing into a dangerous complication, known as Diabetic Ketoacidosis (DKA). DKA has symptoms such as breathing issues, fruity smell to their breath, vomiting, stomach pains, dry mouth, in addition to the classic diabetes symptoms of excessive urination (frequently shows as bed wetting in younger children), extreme thirst, sudden weight loss, extreme tiredness/lethargy, increased appetite (although can also present as decreased appetite).  Don't guess, CHECK!!

This is an Infographic that can be saved as an image, printed and distributed to your
local pediatrician's office(s), clinics, waiting rooms, etc. Spread awareness and save lives!

This is an Infographic that can be saved as an image, printed and distributed to your
local pediatrician's office(s), clinics, waiting rooms, etc. Spread awareness and save lives!

For more information on DKA prevention and more posters available for download, visit www.testonedrop.org


So Insurance Wants to Deny Your CGM (or pump?)

     I am a part of multiple Facebook groups for diabetes support (otherwise known as part of the DOC, diabetes online community). Throughout these groups I see a constant trend: Insurance denials for type 1 diabetes pediatric patients. This drives me bat-crazy. Literally bonkers. I cannot find the justification for denying life-saving/changing technology to these chronically ill children. I cannot tell you how many denial reasons I’ve seen from insurance companies scattered throughout the country (USA). Sure, some are state insurance/Medicaid, but the majority of the denials are from private plans which have hefty policy premiums on them.

     So a few years ago I decided to do something about this inequality. Insurance denies based on a numbers game. They imagine that 8/10 people will not appeal a denial decision, and the remaining 2 who appeal the decision are not competent enough to put up a good argument that is strong enough to sway a plan determination. That’s where I come in. I am a former medical office manager who dealt with insurance benefits and denials on a daily basis. Specific to diabetes, I have done the research for you for any number of pediatric denial reasons and create an appeal letter for you to use in your fight. Are they 100% effective? No, some insurance companies (I swear) do not seem to read the appeals the first few tries until a third-party eventually (actually) reads it and overrules them. But those insurance companies again are relying on people to give up and not realize that you have multiple attempts at appealing before the final determination comes. Some just have absolutely no benefits for a CGM (more likely with Medicaid products), so you are essentially arguing about something that isn’t offered which is a huge uphill battle and may need to be court-ordered. However, for the majority of (my) appeals completed, they are approved first-try within 30-45 days. What do I charge? Nada. I believe in karma, as well as the device, and know that with every child on a CGM, lives can be saved.

What Is Important to Know for Insurance Denials?

·     First, I am here to help! If you are on a private plan and received a denial for a CGM (Dexcom or Enlite) for a patient under 18, please contact me to discuss appeal options. (See below Disclaimer first).

·     Most insurance plans allow your doctor to request a peer-to-peer evaluation first. This has to be done prior to any written appeals. Your doctor will have a phone conversation with a medical doctor reviewing the denial, whereas they try to come to terms with why it might be medically necessary to approve the device. This works about 25% of the time, especially when it is for denial reasons such as no evidence of necessity/no evidence of hypoglycemia, etc. Your doctor may be able to give better info than the paperwork or refute that through other means.

·     Most states mandate some type of insulin pump coverage. However, they do not specify that it has to be the one you chose.  You may need to appeal a specific pump model if they require you to choose the lower cost pump model. This can be won, although it may take a lot of appeal attempts and is not guaranteed. Also, not all insurance companies have come on board with threshold suspend insulin pumps (those labeled artificial pancreas, such as the Medtronic 530g).  This device can be harder to fight a denial on, as it is newer technology and doesn't yet have the million research studies that insurances want to see before they pay out money. You can still appeal but keep in mind that it is based on both CGM and pump technology, so benefits for both need to be in place to have the best level of success.

·     If you max out on appeals and reach a final determination of not covered, you can start applying for the service/device all over again after the 1 year mark occurs (from the original application). So say you ask for a Dexcom on June 1st, 2015 and are denied. Appealing may last through November 2015. You can re-apply starting June 2nd, 2016 rather than November 2015 (or not at all). 

·    State Medicaid plans vary in coverage for Dexcom’s. Generally there are various plans administrators offered per state and they are NOT all the same. If you have state insurance and are denied a CGM, look into the other plan admins/providers. Some do not have any type of coverage for CGM’s while others in the exact same state offer CGM’s with no questions asked. Also, for state and private insurers, medical policies are updated yearly (often middle of the year), so you may not have qualified before (and were denied or told not covered) but are now eligible.  

·    Sometimes (sad to say), there is no coverage. As in, no coverage ever (or without a court order). This is not due to medical necessity, age, experimental, etc. I liken this to trying to order a burger at KFC. KFC does not have it on the menu. There is no code within KFC's system for a burger. They have no supplier for the beef. But you are demanding a burger. No amount of demanding will make it happen without "management" becoming involved. This is the same as an insurance company who has neglected/abstained from adding the CGM codes to their policy. They don't have the code in their system, it's not on the reimbursement schedule, and they don't have a supplier lined up to provide it. Appealing something that to them, does not exist on paper, is a tall order. There is the slight chance that an appeal will succeed, but that is something that few people are willing to do due to the amount of time involved. (It is easier to switch insurances, talk to HR, crowd-fund, pick up a secondary insurance, etc.) However, if you are not able to switch insurances or self-pay, then give it a try, just be prepared to exhaust your appeal attempts before giving up. 1x appeal/phone call is not going to overcome this barrier, but if you are prepared to put in the work, the chances of success are increased.

·     Some plans need a plan administrator from HR (for work-provided plans) to set up a revised policy condition specifically addressing CGM’s (or pumps) for that plan in order to be approved. No amount of appealing will overrule it if your employer has specifically denied access to the product in question. Only they can revise it, not the insurance. (This is a rarer example, it is usually not an issue with the employer). 

·    Sometimes the supplier gets it wrong. Shocking, I know. A supplier might say that you are denied the CGM or "it's not covered". What they might not continue stating is that it is due to them not having a contract with your insurance and that simply by finding a new supplier, you can be approved. It might be because you no longer have pharmacy coverage but rather DME, and as a pharmacy supplier, they are told no (or vice versa). You may not receive a letter from your insurance stating you were denied. Why? Because likely the supplier verbally heard no when they were making a benefits determination instead of actual application, therefore a denial was never generated by your insurance company. Therefore, you never receive a letter of denial. You should always receive one within a few weeks of "applying", otherwise, there is a strong possibility there was never an official denial by the insurance company.

·     You are entitled to know exactly why they are denying, and what information or policies they used in making that determination. You can request to be sent those guidelines/research studies that were used in determining their medical policy on the topic. You may find that they are denying due to a research study or industry recommendation that is 8 years old and has had opposite findings in newer studies/recommendations. Insurance companies only revise policy once per year and are not going to look very hard for better studies when it will cost them additional money to fund more people than before.

·     Get your doctor involved. It can only strengthen your appeal to have a doctor’s letter included in your packet. Also make sure that the doctor submitted the correct information. Maybe they accidentally coded that you/your child was "in control" when in fact, that may not be accurate (more likely with ICD-9 coding than the new ICD-10). Perhaps they accidentally stated that there is hypoglycemic awareness, or didn't document the fact there were multiple low blood sugars a month prior to the appointment and they only downloaded/reviewed the past week's worth of blood sugar logs. Any of these little items could lead to a denial by the insurance, who is relying on the doctor first and foremost to make a determination of medical necessity.

·     You might not have really been “denied”. Review your benefits and correspondence carefully. Sometimes you may have had benefits change from pharmacy to DME (Durable Medical Equipment) (or vice-versa). So you place your order on February 3rd and they deny payment. What??? Well, your supplier most likely didn’t verify benefits after the first of the new year and catch that you no longer are to receive DME benefits for something they now consider a pharmacy product. It is SO important to verify with your suppliers every new year that an updated benefits determination has been made.

·     The top topic I hate is lack of prior authorization. Supplier told you that your system was approved, hurrah! Three months later you receive a bill from the supplier, saying that you have been denied the device that was already mailed to and used by you (or your child). It’s a medical device so you cannot return it which leaves only appealing the insurance denial as an option. It's stressful. I hate hate this because it is actually the supplier’s fault for issuing the CGM without WRITTEN confirmation of benefits. A lot of benefit determinations are made verbally over the phone with your insurance, where a representative is sitting there looking at a screen with your policy on it. They see that CGM is a covered benefit and relay that info to the supplier. However, they failed to note that deep within the medical guidelines are qualifications for receiving that CGM. Because they didn’t look at the qualifications, they didn’t see that the insurance company actually doesn’t approve CGM’s for kids who are under 8 or that the A1c has to be within a certain zone. So while it is a covered benefit for most, it wasn’t for your situation. However, if a proper benefit determination had been made, it would have been caught, the supplier would have told you that it isn’t covered due to XYZ, and a denial letter would have been sent. You could have appealed it and most likely gotten the device within 45 days.  The supplier will say that the insurance company didn’t tell them, and the insurance company will state that the written terms of the policy always prevail (over verbal or limited benefits checks). Meanwhile, you have used the system and the supplier expects to be paid. So please double check your medical policies when possible!! (Note: I see insurance companies retroactively cover, so always ask. It doesn't mean it is guaranteed, but if you don't ask, it is greater chance they will not retroactively cover/pay).

·     It isn’t a true denial when you have large co-pays/deductibles/co-insurance. You might actually be approved for a CGM/Pump but insurance negotiated rates might be $4,000 for a starter kit (example only, every insurance is different). Your deductible is $2,500 and you have 20% coinsurance. This means that you are responsible for $2,500 plus $300 (20% of the remaining $1,500) for a total of $2,800 to get started. Just because you might not be able to afford this does not mean that you are denied, only that you have a plan that makes your out of pocket expenses high. If you find yourself in this predicament, please see my post on choosing insurance that best fits your needs. 

·     If you want to tackle an appeal yourself, take out the personal. Eliminate any emotional pleas, frustrations, or how the device is more convenient. They will not approve devices simply because you might not have to wake up at 2am to do a night-check anymore (convenience). They don’t care if you had to downsize your house to pay for medical care or that you cannot afford to pay for the device on your own. The more you make it sound like a mom wrote it instead of your attorney/doctor, the worse off. Use words like “patient”; “post-prandial” (the after-meal blood glucose); “caregivers” instead of parents/mom/dad/school nurse. Hypoglycemia, Hyperglycemia, Diabetic Ketoacidosis, etc etc. Don't assume that the doctor (or judge) reviewing the appeal knows what a CGM is/does or why it is so vital to the patient's well-being, so a short paragraph explaining the system is also helpful. Add any particular stories of severe blood sugar or any additional factors that may cause unexpected or delayed hypoglycemia, such as sports, swimming, etc. My appeals tend to end up between 10-15 pages long due to the amount of research data I include to back up my claims. Insurance companies need to know fiscally how not having this device could mean increased out of pocket due to emergency medical situations, backed by actual data. CGM's aren't cheap, but neither is an ER visit.

o     Example 1: “As the below referenced study in this specific age group is reliable data and postdates any studies used by XYZ Insurance to influence the medical policy guidelines, it can only be surmised that XYZ Insurance is now utilizing outdated and therefore unreliable research in its medical policy when it….(denies due to abc).”

o     Example 2: “The caregivers are extremely willing, able and confident in their ability to correctly administer and interpret the CGM data results to manage the patient’s glucose levels within the preferred range (given the right tools).”

o     Example 3: “The patient’s age does not lend itself to understanding the scope of this disease or the risks of complications. The patient may be busy and not be in-tune with any symptoms that might arise indicating either high or low blood glucose. This can delay medical treatment and cause a crisis versus being caught early with audible alarms for the child and/or caregivers.”

o     Example 4: “Exercise is vital for diabetics but delayed hypoglycemia is a risk. The delay can stretch hours after exercise and cause hypoglycemia. It is impossible to monitor blood glucose values for the full 24 hours post-exercise using manual blood glucose checks. This would necessitate hourly checks to monitor the glucose trend to see when the delayed hypoglycemia might occur. Given that exercise is recommended on a frequent basis for all children, this is impractical.”

My husband is convinced that insurance ruffian’s will be banging on our door for helping overthrow their denials, but oh well!  I hope that this has helped you somewhat (or a lot!) in your fight. I encourage EVERYONE to appeal insurance denials. Remember, I am available for help! 

[Updated March 2016: I am currently testing an appeal letter in pediatric Medicaid/Private plans for those offering NO coverage (ie: not based on medical necessity but rather due to not being included within coverage at all). Given the results, I may make this letter available to the general public. If you would like a copy in the meantime and have received the denial letter already, please contact me for a copy]. 

Disclaimer: This is considered opinion only and any advice/help is not intended to be a guarantee of payment nor replace any legal or medical counsel. Follow your doctors recommendation regarding immediate use of medical devices vs. appealing delays when deciding medical treatment. Purchasing without insurance approval will result in out of pocket costs to the user and this will likely not be reimbursed by the insurance company. Outcomes for any appeal, whether written by blogger Samantha or yourself, are in no way guaranteed and/or promised. All appeal approval or denial decisions are based on your insurance companies policy guidelines and the coverage details from your written policy. There are situations where appealing will not be recommended or able to be completed by the blogger due to personal opinion/experience and/or lack of time. Ultimately it is your decision (along with your doctor) whether you proceed with any level of appeal and should not rest solely on a recommendation made off this site or in other communications. Timeliness of filing is solely the responsibility of the patient. Although I strive to provide appeal writing help in a timely manner, this is in no way a guarantee that an appeal will be written by any certain date, as this is a free service that is provided on a first-come, first-served basis in my free time. If you have emailed me and receive no response within 72 hours, please try again. There is no guarantee that every request will receive my help . At this time, I am currently only reviewing insurance denials from private insurance plans (individual or group) for a CGM or Insulin pump, for Type 1 patients under the age of 18. However, I can occasionally offer comments or limited help to pediatric patients with state insurance (Medicaid) or Type 1 diabetic adults with a private insurance plan. Any copays, deductibles, coinsurance, insurance premiums or other financial outcomes are solely the responsibility of the patient and/or guardian. The device companies and/or suppliers hold all warranties and customer service for the devices. I am not an attorney or doctor, nor an expert of any type; therefore it is the responsibility of the patient and/or guardian to thoroughly review any appeal for accuracy and/or errors before submitting to the insurance. I am not affiliated with any entity, whether for profit or non-profit. Any appeals I create are to be used only for the patient intended and are not to be made available through any other party or for sale. Permission is not granted for any duplication or online posting (Instagram, Reddit, Facebook, discussion forums, third party e-mail or any other online website, host, server, etc).


To the Parents of that Newly Diagnosed Kid

I see you there. You, the one who never imagined being in the hospital with your precious child. No matter how old they are, you still think of them as a small child while in your arms. You feel guilty that you might have missed the earliest signs and caused more harm. You are putting on the brave face in front of them and crying when you close the bathroom stall door. You're wondering how to pay for everything -  the hospital, the numerous new prescriptions, the time off from work, the various new foods that you're thinking will be needed. You are sitting in the hospital at your child's side, praying for both a miracle or someone to wake you up from this bad dream. You are also wishing for some sleep, because that's currently in short supply with all of the beeping monitors and nursing staff collecting blood every hour or two interrupting your REM. I see you trying to learn this new diabetic language while tossing all your preconceived notions about diabetes out of the window.  You are juggling your other kids/pets/job/family while being determined to spend as much time at the hospital as possible.  I see your stress as you learn this new lifestyle of carb counting, insulin formulas, emergency protocols, and all the while hoping that you aren't going to make a mistake and harm your child. I see you trying not to freak out the first time you have to stick your child with a needle. You are questioning every mouthful of food they consume, wondering both if it's enough or too much at the same time. You are worried about your child and their mental understanding of what this diagnosis means. You are also worried about how their teacher/sitter/friends are going to be able to take care of them if needed. And you are responding to well-wishers like a champ while swimming to your new island of loneliness where no one else understands. 

I see you. So on top of all the other information you are getting, listen to this. Soon, diabetes care will be the tiniest bit easier.  You will have nights where upon going to sleep, feel like you should get an award for best pseudo-pancreas. You will start talking the talk and understanding what the doctor's intent is when they make changes.  You will get diabetes "right" about 75% of the time, and curse it the other 25% for not making up its mind. You will know there was nothing you did or could've done differently to cause this diagnosis. You will find support where you least likely expect it. And I just want to let you know, I see you.  I've stood in your shoes. While every journey is different, we are all linked together because we get it. Like, "get it" get it. And it will get better for you.