Saturday, May 21, 2022

Disappointment with the Ontario Government's Assistive Devices Program

Last Tuesday, I finally had my endo appointment.  While my A1c is at the highest it's ever been since I started insulin pumping, the team had no problem with it.  When you're used to being able to use a Continuous Glucose Monitoring device (CGM), it can be a great tool for waking up from an overnight low (especially if you live alone, or have a partner who doesn't wake up to anything).  Sadly, as most of us can attest to, many of us with Type 1 Diabetes (T1D) don't sleep very well (my Fit bit doesn't lie) - because we are tuned into our bodies as best as we can to detect lows/highs.  I fail at miserably without having a CGM to recognise those fluctuations in blood sugars that for some make make or break them.  

I've been hypo unaware all my life.  I didn't realise this until starting on an insulin pump in 2008, and learning about CGM's.  I'm very lucky that no ill effects have come from often working with being at times so low, I wondered how I did it.  I either must have a very strong will to not let diabetes effect my work, or now that I think about it  ... I was dumb and uneducated as to how low blood sugars can bugger up your brain.  Luckily, in 2014 I was gifted Dexcom G4 receiver/sensors, and my life changed at that time.   I've been fortunate to have had over the years friends with benefits that have helped to keep me supplied with their discards as they go onto more advanced systems.  A nurse onboard the cruise ship I was on a few weeks ago (still working on that blog - it's an interesting one) - who was from South Africa - explained that in her country many diabetics like myself are unable to afford these pieces of technology.  We both agreed, it's only the rich folks / countries (we laughed sadly at ... the white man privledge - especially in the developed countries).  

Since earlier this Spring, when the Ford government released the news that CGM's would be part of the Assistive Devices Program (ADP) in Ontario.  Except the catch was, only 29% of T1D's would be able to have coverage.  I'm not one of those 29% since even though I am hypo unaware, I do not fall into the other areas that would allow me to have some help with paying for this device.  As someone said, have a few bad hypos ... go to ER ... then you'll have proof that you need a CGM.  It's like, WTF, no way.  After having attempted suicide last year and ending up in ER where it took awhile to get my blood sugars stable, I'm not going to play Russian roulette with my health.  

I'm lucky I survived this, but to do it again to be able to prove that I need the CGM?  What goes through my head is, the cost of that ER visit, along with 3 weeks in the mental ward (where staff did not understand what T1D was, and the hospital records I have access too statingf that I'm not a well controlled diabetic).  Fork it!  Give me a realiable CGM (and correct insulin coverage) and I'll be able to show you what this tool can do to help a T1D, and not be forced to do ER visits for lows/highs.  The cost of these hospital trips far outweigh what the cost of being supplied the CGM by the province.

The one thing that has come to my mind since being denied coverage through ADP for the CGM based on the guidelines ..... 

DISCRIMINATION

Why do T1D's who are on Ontario Disability Support Program (ODSP) not have the same guidelines as we working stiffs for going on the CGM?   And when I say working stiff, many of us are either working 1 or 2 jobs to pay the bills, usually at minimum wage (currently in Ontario it's $15 CDN / $12.68 USD / $16.60 AUS / $11.06 EURO ).  Majority of work that many of us are able to find also do not have health benefits.  I would love to have all my medications, eyeware, dental to name just a few covered, even if I wasn't fully reimbursed ( here's what is covered through ODSP ). Yes, I know I will get comments, stating how little ODSP recepients receive from the Ontario government, but either they don't understand how much health benefits are if they were paying for it on top of their rent/food/entertainment monies received.  I could go on here, but as someone who has always had to budget in order to afford things, I've given up luxuries that I'd love to have just to be  able to live.  Is there something wrong with me???  That I give up not having a dog, a new car, a pack of menthol ciggies (yes, I used to smoke occassionally but a $20/pack ... that's potential food on the table or a credit card bill), a coffee out more often? 

So, with that in mind, I'm going to attempt to reapply for the Disability Tax Credit, that I'd been fortunate to have that helps pay off medical expenses that aren't covered by province.  I did finally find an endo willing to sign it off last year, but even with following guidelines from various virtual diabetic events I've attended in .  I was deemed to not be "meet the eligibility criteria".  And yes, this lead up to my suicide attempt last summer, because I felt so unsure as to why I had been accepted prior.  Why do government institutions make it so hard for the honest person to be able to have some financial help and be a productive part of society?

3 comments:

  1. Currently, CGM's are not yet considered a standard of care in many parts of the world in spite of the widespread benefit they provide. In reality, if the province determines hypoglycemia unawareness should be a criteria for coverage, you can really thank people like Colleen Fuller for making that coverage a reality. That said, while CGM coverage in the U.S. is wider, insulin coverage sadly is not. A costly device and sensors doesn't do much good when patients cannot afford insulin, but the $204 U.S. billion in Rx cash rebates for drugs paid to PBM's to secure insurance company formulary placement is instead diverted to employer plan sponsors instead of patient assistance as it rightfully should be. Hence, while Canada's system may not be perfect, its not quite as dysfunctional as it is in other markets. Be thankful for that, I guess!

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    1. Just an FYI in the US rtCGM has been Standard of Care for at least 6 years as per your Endocrinology.Association

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  2. Anna you state you meet the hypounaware but not the other parts...the first part is T1D you meet that...the 2nd part is hypounaware you meet that...3rd part is you are committed to use rtCGM full time/willing to share data and have an understsnding of how to use the data again which i believe you meet. You fit the criteria, the ADP program is not the problem but your endo is....
    Also who is Colleen Fuller?

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