In the nick of time

So our insurance has a specific company we can order our Dexcom CGM supplies from.  Even though these supplies are available at local pharmacies, I have to order them from a healthcare supply company but I can get, according to insurance, 3-months of supplies at once.  

Sounds good right?

Hmmm.  One Dexcom sensor lasts 10 days so for 3 months I get 9 sensors.  90 days of supplies for three months but some months have 31 days in them.  I cannot order new supplies until 12 weeks after my previous order.  I tried to order earlier online but the shipping date was for exactly 12 weeks from the last order.  I called the company this week just to make sure there were no other options and was told it was out of their hands, nothing they could do.  It isn't a large problem but it is an additional stress and we have plenty of stress, full up of stress, no thanks I don't need anymore stress.

So on the day they will send our next shipment we will have 7 days left of our current supply and they say it takes 4-5 days once they are shipped.  So if everything works out we will get the new sensors the day before we need one. 

I asked, not really expecting a satisfying answer, what happens if this sensor fails, or the adhesive wears off and it gets too loose, or the shipment is delayed?  The answer I got was "just give us a call and we'll make sure to ship you a sensor."  Um, you are already shipping sensors and they may not arrive in time but your solution is to ship me one?  I'm tired already of this and I've only been doing it for a week shy of 6 months. 

I'm a member of a type-1-diabetes facebook group in my general region (within 4 hours of my location) so I asked them about it.  I got several "groups" of answers.  

1. You just have to deal with it, work within the system, you can always go back to poking his finger 5-8 times a day and waking up in the middle of the night to check blood glucose levels for the few days while you wait for your shipment to arrive.  It only happens like this every three months. 

2. Pay for a box of sensors out of your own pocket so you have a little leeway. A box of sensors without insurance is over $350 from what I could find but sometimes costco has them on sale in their pharmacy for less a few people told me.

3. Just don't use a sensor for 5-10 days this time around but order on time and you'll be ahead for a while but, just so you know, you will eventually use that time up depending on how many days are in the month and where the weekend falls on your shipping date so you'll have to do this at least once a year.

4. Switch insurance companies.

I appreciate this group, I really do but these are four variations of bend over. That sucks. 

This group is full of amazing people though.  They never post negatively towards others in their shoes.  They never say "you are not entitled to your feelings on this" but they also don't let you wallow in self pity.  They try to lift you up and cheer you on and remind you that you've got this because you are the only one who can do it.  

Many members of this group, who I've never met, reached out in private messages to me.  They offered to loan me a sensor of theirs and trusted me to replace it when my shipment arrived.  They offered to deliver it to my house in the middle of the night if I needed; some of these people were over a two hour drive away. They've been where I stand and they know how it feels to tell your child that we are back on finger pokes for no reason other than that we can't have a sensor a few days before we will need it because insurance thinks we can't be trusted with it.  I guess they are worried we may overdose.  

I'm thankful we have the options we do but frustrated with the hoop jumping.  I will likely look into a new insurance option next fall when our open enrollment comes around and if we switch it will start in January so at least another six months.  It will likely just be a new set of issues though that I will have to learn to navigate.  When to call, who to ask for, how to get things done.  I am super fortunate that I have access to the types of health supplies I do have access to for my son but disillusioned a bit by the process.

So I'll just keep up the fight and know that others are out there making the same phone calls and feeling the same disappointments; connecting themselves with some people online and being thankful that other's hearts and trust is so much greater than could be imagined. It does feel strange to me how one thing can leave me so full of hope and grumpy sorrow at the same time.

And the wait goes on...Continuous Glucose Monitor

Yes we're still waiting.  We've been waiting.  Sometimes patiently waiting and sometimes angrily waiting and sometimes frustratingly waiting.

Our insurance company covers pretty well for diabetes supplies once they decide to cover them.  They take their time deciding though.  We seem to need to do a lot of pushing and calling and submitting again and again the same things.

We were told in the hospital that we could submit for a CGM 30 days after diagnosis.  So we did that on Jan. 9th.  We waited a couple of weeks then called to check on the status.  Nope, we submitted our request incorrectly.  We contacted our endocrinologist and they said they'd get back on it.  More waiting.  Two more weeks and another call but nope nothing going on yet.

About three weeks ago I got a text from the medical supply company that my paperwork was in and they would be reaching out to me soon.  Hooray!  I actually started crying, at work, in front of my coworkers.  What a mess I've become.

So we wait again, for another two weeks.

Then I get a text message from my ex-husband letting me know that insurance informed him that they declined to cover the CGM because there was an error in paperwork.  The thing is...why was he getting information and I wasn't.  The kids are covered twice first by me and then by him.  We both have the same insurance provider.  His insurance is the secondary coverage.  So I call the insurance company again hoping that the secondary coverage wasn't going to be kicking in any help but that the primary coverage had approved it.  Nope.

It was declined because it came from the endocrinologist and not the pediatrician (the pediatrician is in network and the entire Children's Hospital and all their staff are out of network).  So then I ask why my ex husband received this information as the holder of the secondary insurance but I wasn't contacted.  So they checked "my" account and told me the phone number they had on record was his.  Ummmm.  We've been divorced for 9 years!  Last year I had the same insurance company for my kids and he was unemployed and had no insurance for the kids.  We have open enrollment every year in Nov. and I updated my information but stayed with the same company.  We did both go into the new school employee benefits network since I have always been a teacher and he has recently become a teacher.  So now I have someone researching my account to see how his information landed on my account - it wasn't just his phone number either, it was also his address and he has been receiving all of my mail - not just for the kids but also my medical information!  Of course all this is a different battle so...

So armed with my new information, that we need the pediatrician, I give his office a call and talk to a nurse.  I LOVE NURSES!  I have always loved nurses. Lots of relatives are nurses.  Nurses have always been kind and knowledgeable. My son's pediatrician is awesome but he wants my son to be seeing a specialist for his diabetes.  The nurse and I talk it through and although they NEVER do these types of requests they are going to figure it out and call me back.  They are going to contact his endo. and get all the information on what she is recommending and then they will submit.

I get a call from her the next morning that they have everything ready but they don't know where to send the request.  Hmmm I don't know.  So I call the insurance company.  I explain that we need a pre authorization and my pediatrician needs to know where to send the paperwork.  But they don't understand and ask a bunch of questions then finally decide what I need to do is go pick up the prescription from the Dr. and take it to a pharmacy 100 miles from where I live because that is the nearest affiliated pharmacy.  At this point I would've driven the 100 miles there and back but  I know that won't work so I tell them to put me up to a supervisor.  Supervisor thinks I should talk directly to the medical supply company but I explain to him that we already did that and there was no pre authorization on file with insurance so it got declined.  After talking to him for a long time he has me talk to someone else.  This went on for 3+ hours.  No one could just give me a fax # or agree that there was any such thing as pre authorization although I know there is for my insurance since I needed it recently for my older son.

At one point my insurance company said they knew who I needed to speak with, put me on hold, then when the line picked up I was talking to a representative from the medical supply company.  Unfortunately they couldn't do anything without the insurance company having the pre authorization.  So I had to call the insurance company back but not before I burst into tears at the poor medical supply company rep. ah Kristin, she was very sweet as I completely broke down and there was literally nothing she could do to help at all except listen.  I finally had to give up for the day.

This morning I called the pediatrician's office again and was surprised to get an update.  The medical supply company reached out to them and gave them a phone number and fax number for the pre-authorization department at my insurance company.  So they called in and spoke to multiple people and got a lot of "conflicting" information.  First they were told that my insurance wouldn't cover a CGM no matter what a physician recommended.  Then they talked to someone else who told them they couldn't make the request it would need to come from the Endocrinologist.  Then they were told by another person that it was fine that it came from the Endocrinologist but they always have to verify that the primary care physician agrees with the treatment and they'd called but found out my son doesn't have a diabetes diagnosis so the Dr. declined the order...more on this in a minute.  Finally they reached someone who said they would review the request and sometime in the next 2 weeks the authorization department would decide but if they did agree to cover it we should know our deductible applies (FINE).  To hedge all the options my son's pediatrician & amazing nurse and staff decided to do ALL THE THINGS.  They called, they faxed information in, they called the Dr. that had rescinded the order and explained the situation in case he got called again, they called our Endocrinologist and had her fax in another order as well.  WOW!  Fingers crossed.

So I called insurance again today to see if there is anything else I need to do, to make sure that Dr. that rescinded the order isn't listed anywhere on our file, and to make sure that there would be notes on our file that we were actively working together with our pediatrician and endocrinology team to get this device.   The representative I spoke with today was really helpful, she was thoughtful and tried really hard to address my concerns.

First she figured out that the Dr. that had been contacted and rescinded the order was the physician from the urgent care clinic that had diagnosed my son as having a sinus infection while he was really in diabetic ketoacidosis; we saw that Dr. in an urgent care clinic and within 12 hours my son was on a helicopter being transported to the children's hospital after we took him to our local hospital emergency room.  That same physician never called us back with the results of the bloodwork he had ordered on my son.  She assures me that she left very specific notes regarding this physician and made sure his name is NOT listed anywhere in our file except in that note.  He shouldn't be contacted again regarding my son.

She figured out how my ex husband's information was being updated into my account.  Again she left very specific notes in the account about the status of the children and their coverage as well as locking their address & phone number so they cannot be changed except by me.

Finally, she called the endocrinologist and pediatrician for me and made sure they were each resubmitting the request to the correct fax number for the authorization review department.

I want to believe that she did all these things and that early next week I will hear that we were approved and that our CGM is on its way - finally.  I want to believe but I just can't really.  I very badly want her to have come through and for things to work out.  But if not, I am ready to call again, spend hours on the phone, pester anyone and everyone, and keep going until we get the best possible care options for our son.

If you are out there, fighting this battle too, you may never see me, we may never speak, we may never meet, but I stand with you and I know you stand with me.  Keep going.  Insist on the best care for our children.