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 3^rd 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).