I'm new to this community. In fact, I've never been heavily involved in any support structure for my disease in the 10+ years since my diagnosis. I'll leave the analysis as to why that might be for another time. For my first blog post, I'd like to talk about what has to be one of the most frustrating ordeals that I've been through since I started treatment for type 1 diabetes.
So in September of 2008, I finally switched from multiple daily injections to pump therapy. I went with the Animas 2020 pump and was very excited to start a new chapter in my diabetes management. Unbeknownst to me, however, the very same day that my pump was delivered was also the first day that a new law in Ontario went into effect. The Ontario Assisted Devices Program was passed to help people pay for insulin pump therapy. Of course, what the insurance companies in Ontario saw were dollar signs and even as my pump was delivered, I was already in a battle with them regarding whether or not they needed to reimburse me for the $3000+ bill. Fortunately, I managed to get them to do just that and (breathing a big sigh of relief) I proceeded to start my pump training.
Fast forward to May of this year. I've mostly loved pump therapy and I've found that my BG numbers are a lot more stable. I still sometimes struggle with my level of engagement with my disease - but that's another story. I'd been ordering supplies direct from Animas and paying with my credit card and (impatiently) waiting for my insurance claim to process and deposit back into my account. During the almost two years since starting pump therapy, lots had changed in my life - the biggest thing was becoming the father of a beautiful baby boy. We also up and bought ourselves a bigger house.
So come May, I am looking at our bank statements and noticing that a payment from my insurance company was well overdue. Grumbling, I picked up the phone and proceeded to wade through the horrendous automated telephone service until, finally, I was able to speak to someone. After checking and verifying (half an hour later), I was told that my claim was not approved because I should be seeking government funding.
Of course I was floored. So the Ontario Assisted Devices Program that had caused me trouble back when I received my pump in the first place was rearing its head again. The lady on the telephone explained that - by law - if the government covers a health item, it won't be covered by health insurance. She went on to explain that I needed to contact the OADP and apply for that funding and then inform my insurance company of the status of my funding. She said that if I am ineligible for funding from the government, that they would then reassess my claim. Of course I argued. Of course I got nowhere.
So a flurry of phone calls (and a veritable orgy of non-productivity at work) later, and I've got pretty much no answers. The OADP would only suggest that I apply as soon as I can but warned that the process can take a very long time. They also suggested that no matter what happened with my application, they would not provide me with any retroactive funding suggesting that my health insurance provider is still responsible for those claims. The diabetes education clinic at my local hospital was sympathetic but ultimately unable to help. Apparently I had no choice but to carry the cost of supplies already purchased (by then, 4 months worth which is about $1050 CAD) plus the cost of any further supplies needed while waiting in the queue.
My wife and I both work full time and while we manage, we don't approach any sort of idea of "wealthy". Since we moved, we've been doing our best to tighten down our spending to pay down our line of credit and car loan with mixed success. Like most middle-class folks, we just have to be careful and aware of the amount of outgoing money vs the amount we make. So when I was forced to go home and tell her that my disease was very likely going to tie up any "extra" money we might have had for who knows how long, I was understandably upset and very down.
So as if that situation wasn't bad enough. It turns out that just before this all started that I'd managed to miss an appointment with my endo. By way of excuses I'll offer two: the first is that my job can be demanding. I'm an IT Administrator at small post-secondary establishment that shares a campus with the University of Waterloo. Because our organization is small, I am the only person who actively does my job which saddles me with the burden of responsibility. Often, I will be asked to do specific work at a moment's notice and don't always have the easy option of saying "get someone else to do it". While theoretically, I could always just suggest that I have a medical appointment, I'm sure most people will recognize that it can be very challenging managing people's expectations in a professional setting while also juggling your own personal baggage. (More on that in another blog post). The second excuse is less within my realm of control. My endo shares office space with a walk-in clinic and like all walk-in clinics in a province that is desperately short of general practitioner MD's, it's VERY BUSY. I have routinely spent 45+ minutes redialing their number before being put on hold for another 10. Considering the fact that I can only call during business hours (not surprisingly the hours that I'm also at work!) I'm forced to take a chunk of time out of my day to get ahold of them and try to modify appointment dates/times.
This particular appointment miss was, admittedly, purely my own fault. I generally try and use Google Calendar for most of my scheduling and for whatever reason, the appointment was in two weeks after the actual date. When I finally did attempt to show up for my appointment, I was told that I was a "no-show" and that my endo would not see me without another referral. This was about 3 weeks before the fiasco with the insurance began.
So - now I'm standing holding the proverbial bag. No insurance coverage for my insulin pump supplies. No endo so no application to the OADP. All I did have in my corner was one hell of a great G.P.
So I made an appointment with her and explained the whole sordid mess. As always, she was understanding and sympathetic. She wrote another referral to the endo (and explained to me that the reason he demands this is purely monetary and that she doesn't agree with the practice) and even asked if she could fill the OADP forms out for me instead of him. Unfortunately she couldn't.
That was at the beginning of July.
I have yet to see my endo.
So a week or so goes by and I feel like I should have heard from my endo regarding an appointment. When I call, the explain that they have received he referral but that I need to wait for them to make the appointment - don't call us, we'll call you. I explain the issue from start to finish and urge them to realize that time is of the essence. I even go so far as to suggest I fax the OADP forms to them for the doctor to fill out ahead of time. They tell me I can go ahead and fax them but that the doctor won't fill them out until after my appointment.
So another week or so goes by with no call. When I get ahold of them (recall how long it takes me to get through to them every time), they indicate that it's up to my endo to schedule the bookings and that if I haven't received a call it's because he has determined that other patients are in need of more urgent care. Flabbergasted, I reiterate my situation and stress that I only need a form filled out to allow my funding application to be sent. They are unsympathetic and downright rude.
Another week or so goes by and I still hear nothing. When I call back they are as stoic as ever. The lady finally suggests that if my issue is "SO URGENT, then why didn't your doctor send an URGENT REFERRAL" (stress theirs). When I called my doctor she nearly laughed out loud at the idea. She'd never heard of a re-referral needing to be urgent just to get a timely appointment. But she being her, sends one on my behalf that very morning.
A week or so later, my GP's receptionist calls me to tell me that I should have received a call from the endo's office confirming my appointment date. Of course, I hadn't but at that point was just finally glad to hear that it was coming together. The appointment is scheduled for the 2nd week of August. I'm pleased to finally be on the way to STARTING my application process.
A few days later, I get a call from my endo's office. Believing I'm just going to be told the same information regarding my appointment again, I happily answer. No such luck. The endo needs to reschedule my appointment because of a family emergency. I'm to see him the THIRD WEEK OF SEPTEMBER.
Of course, no amount of wailing and gnashing of teeth will change that date - a "family emergency" is what it is and because I'm the diabetic and need him more than he needs me, it's somehow acceptable for him to push an appointment out more than a month but when I miss one by two weeks - I'm in BIG TROUBLE.
So that's where I sit today. More than $1500 CAD tied up in pump supplies and still haven't even spoken directly to my endo about the application. The worst part is, my insurance company WILL have to pay me for all of that, but are essentially holding that money back as a weird sort of blackmail to ensure that I proceed with the application process. Of course, I would have glady gone through the application process while I was still receiving benefits if anyone had even vaguely mentioned that it would be required. Instead, Great West Life decided to suddenly and completely stop paying me until they can be satisfied that my application is approved or rejected.
Some days, it's very difficult to feel good when you're a victim of the system.