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?

Ontario Government rejects covering Continuous Glucose Monitor / Flash Glucose Monitor

Last Thursday, May 13^th, 2021 in the province of Ontario, coverage for ContinuousGlucose Monitors and Flash Glucose Monitor ( CGM / FGM ) for Type 1 Diabetics was sadly defeated.  We diabetics in this province are very fortunate that tax payers of Ontario currently fund our insulin pumps and some of our supplies through the Assistive Devices Program ( ADP ).  I am one of those working stiffs, that pays their taxes diligently to support important programs like this and feel like I've been slapped in the face hard.

32 Nahs / 14 Ayes

For many of us who advocate for the use of CGM / FGM, especially ones that do not have work/private/provincial assistance to purchase this life saving piece of technology this is a pretty hard hit!  Compiling the list of the “Nahs” list and seeing the faces of the Ministers and how they represent us, started to make my blood boil up (stress is not good for anyone, but with diabetes, it can cause blood sugars to rise … and the CGM will show it off with rising arrows and alarms).

If you were 1 of the just over 2,000 people that signed to push this bill through, fantastic!  Many of us reposted the petition asking fellow Canadians to sign, because if this had gone through, other provinces would hopefully follow suit.

John Whitehead stated to the public on his Facebook page that reflects in a nutshell my thoughts - 

    “So yesterday in Ontario, CGM for all was defeated. Who should we be mad at? Of course the current in power government with the voting power to defeat it is one.

    But who else is part of this defeat? You are not going to like this answer. Go to a mirror look at it, if you signed the petition give a high 5, if you didn't sign the answer is staring you in the face.

    Just over 2000 people signed to push this bill. Other organizations or causes get 20,000 signatures in a week.

    If you sat in the government which causes would you focus on? The more noise the more focus and attention given to it.”

OVERALL A BAD DAY FOR ONTARIO

That last statement above in BOLD RED, pretty well sums it up for me as an advocate trying to make living with T1D less complicated for ALL so we can live our lives to the fullest.  To not be a burden on our medical system that even with the current Pandemic, has been flailing with budget cuts to make corporations happy (the joys of a Conservative government ... NOT).  I would love to put those 32 members into our shoes for even 24-48 hours or spend time with us, to see how diabetes affects each one of us differently, even if we do the same thing every day in our workplace / private lives.  Would they perhaps have voted differently? 

Thank you if you’ve taken the time to read this far, are living in Ontario (or even if you’re not), consider sending an email to the MPP’s listed below who had signed Nah (what a horrible word to use for No) … let us be heard.  I know that even though I don’t notice my MPP’s name on the list, I’ll be writing to each and every one of those listed below, so that they hopefully understand how important these devices are and how the initial cost factor to the province/tax payers will reap benefits with having healthy Ontarian’s living in their province.

If you need further information such as snail mail address, etc.  you can find the details easily using the link for the Legislative Office at the following Ontario Legislative website -  

Deepak Anand (Mississauga—Malton) - deepak.anand@pc.ola.org 

Aris Babikian (Scarborough—Agincourt) - aris.babikian@pc.ola.org

Robert Bailey (Sarnia—Lambton) - bob.bailey@pc.ola.org

Hon. Paul Calandra (Markham—Stouffville) - paul.calandra@pc.ola.org

Stan Cho (Willowdale) - stan.cho@pc.ola.org

Lorne Coe (Whitby) - lorne.coe@pc.ola.org

Rudy Cuzzetto (Mississauga—Lakeshore) - rudy.cuzzetto@pc.ola.org

Hon. Doug Downey (Barrie—Springwater—Oro-Medonte) - doug.downey@pc.ola.org

Hon. Jill Dunlop (Simcoe North) - jill.dunlop@pc.ola.org

Hon. Christine Elliott (Newmarket—Aurora) - christine.elliott@pc.ola.org

Goldie Ghamari (Carleton) - goldie.ghamari@pc.ola.org

Mike Harris (Kitchener—Conestoga) - mike.harris@pc.ola.org

Christine Hogarth (Etobicoke—Lakeshore) - christine.hogarth@pc.ola.org

Hon. Sylvia Jones (Dufferin—Caledon) - sylvia.jones@pc.ola.org

Andrea Khanjin (Barrie—Innisfil) - andrea.khanjin@pc.ola.org

Daryl Kramp (Hastings—Lennox and Addington) - daryl.kramp@pc.ola.org

Hon. Stephen Lecce (King—Vaughan) - stephen.lecce@pc.ola.org

Hon. Monte McNaughton (Lambton—Kent—Middlesex) - monte.mcnaughtonco@pc.ola.org

Norman Miller (Parry Sound—Muskoka) -norm.miller@pc.ola.org

Sam Oosterhoff (Niagara West) - sam.oosterhoff@pc.ola.org

Randy Pettapiece (Perth—Wellington) - randy.pettapiece@pc.ola.org

David Piccini (Northumberland—Peterborough South) - david.piccini@pc.ola.org

Jeremy Roberts (Ottawa West—Nepean) - jeremy.roberts@pc.ola.org

Hon. Laurie Scott (Haliburton—Kawartha Lakes—Brock) - laurie.scott@pc.ola.org

Donna Skelly (Flamborough—Glanbrook) - donna.skelly@pc.ola.org

Hon. Todd Smith (Bay of Quinte) - todd.smithco@pc.ola.org

Dave Smith (Peterborough—Kawartha) - dave.smith@pc.ola.org

Hon. Kinga Surma (Etobicoke Centre) - kinga.surma@pc.ola.org

Vijay Thanigasalam (Scarborough—Rouge Park) - vijay.thanigasalam@pc.ola.org

Hon. Lisa M. Thompson (Huron—Bruce) - lisa.thompson@pc.ola.org

Hon. Bill Walker (Bruce—Grey—Owen Sound) - bill.walker@pc.ola.org

Hon. John Yakabuski (Renfrew—Nipissing—Pembroke) - john.yakabuski@pc.ola.org

Flying High While Chasing the Sun

   Earlier this month, I arrived back home to Canada after a 30 hour flight from Singapore.  I’d had a working / holiday  in Asia for the month of December that had started off in Tokyo, and couldn’t ask for a better holiday with the various countries we explored along the way while cruising  the high seas on the Diamond Princess (and discovering that some of what we take for granted as diabetics here with gadgets, etc.  is unheard of in many of the countries I visited - we are very spoiled!!).

   When I'd originally flown out earlier in December to Tokyo, I had worn my Animas Ping insulin pump after reading a comment on Facebook advising against wearing it when flying.  I've gone back to find that post since seeing it back in November before I departed , but you know Facebook, lots of action in these groups we belong to, and you need a lot of time/patience to search posts at time, and so far, I’ve had no luck.

   Fast forward to our rather turbulent flights at the end of the December to bring us back home.  Early 4 AM (ugh!) start to head to Changi Airport in Singapore (the most beautiful airport I've ever been and below is a little video at this link  I made with fishies in the Enchanted Garden). 

   The 6 hour flight to Tokyo I slept the majority of it, in-between my last bits of yummy food service on the flight.  Blood sugars were doing fine just like they had done throughout the whole month when I was on the Omnipod.  When we were approaching Narita Airport we heard the engines accelerated as the plane pulled up to a higher altitude to avoid either an ongoing plane (or a drone LOL?).  The plane landed and as usual we let all the folks in a rush get off with us being the last.  I noticed my water bottle that had been emptied earlier, sucked in pretty flat.  It’s not unusual for that to happen, but it was something that came to my mind later on when problems started to occur in the 2nd leg of our journey home. 

   Narita is a big airport, so with the 3 hour layover before our next flight, I got to use up the rest of our Yen walking around and getting some much needed leg stretching.  Of course, this kept  Sock Monkey amused as you can see below.  I’d noticed my Dexcom G4 that my trend arrow was straight but my blood sugars seemed to be rising with the alarm/vibrations going off.  No big concern to most of us, simple correction bolus, and all was good (or so I thought).  At this point in time, I still had a days’ worth of insulin left in the Pod, which I’d calculated would last out until the Pod needing changing when we got home to Canada.

   The next leg of our trip was  a 13 hour flight,  I realised something was up.  Corrections didn’t seem to be doing anything and trend line though still straight was showing blood sugars on the rise. Fiasp to the rescue though  I was worried about  the risk of stacking insulin at this point in and maybe going low fast.  The strange thing was that the Omnipod PDM at this point hadn’t alarmed of an Occlusion or possible problem with the Pod.  Confirming blood sugars with a meter to see if my CGM was off track, proved it was pretty well spot on.  I can’t say enough about how valuable a CGM is to a diabetic on insulin!!

25 mmol/l or 450 mg/dl

   We informed the Air Canada flight crew at this point in time that even with the turbulent air that we had most of the flight, that I was having some serious health issues and needed a safe space (not the cramped loo) to do some medical change outs and also to be prepared in case I crashed low .  Due to majority of folks on this long journey sleeping, with our mini flash light in our mouths, we pulled out my medical kit bag and proceeded to remove the Pod which when we looked at the site, it seemed dry as a bone.  This is unusual as usually you see either a drop of insulin and/or blood at the site where cannula is inserted and/or on the cannula.  Also, the cannula of the Pod wasn’t kinked, so obviously that wasn’t the problem.  My hubby Mike assisted me especially with the turbulent flight, and in less than 20 minutes, the Animas Ping was back up and running! Let’s just say the crew of Air Canada was very sweet in allowing me to take over a busy area and at the same time, they learned abit about insulin pumping and Type 1 diabetes.  Yuppers, that’s me, always the educator!

Back on my juice of life with the Animas Ping

   The waiting game started, and with the Fiasp in me, basal insulin working, within 3 hours, I was seeing my trend line going back to my happy zone that I like to keep myself.  I managed to nod off at that point (I was freaking out of course with what was happening earlier), but still being on high alert, it was a pretty crappy sleep even sitting in the Premium Economy that we managed to snag for a few extra bucks for this long flight home (personally, it’s not worth it, but we gave it a try, I prefer cattle class).

  Our conclusion of what we think may have happened - remember that water bottle above?  I found out from a long time Omnipod user that the reservoir that holds the insulin is a bladder, so unlike my Animas cartridge that is solid plastic, this one is flexible.  That could explain perhaps why the insulin was not being infused into the skin if the bladder had sucked itself in.  I had looked over the manual while on flight, to see if there was any mention of this, but there’s nothing stating that this could be a potential hazard.  I’ve talked to a few other Omnipod users, who do frequent long distance flying, it’s never occurred to them. So I’m a freak of nature.

   I dutifully reported what happened to Omnipod Canada (my first time calling Customer Service, and despite what Americans have said about them, which isn’t the greatest, I had absolutely no issues).  I did tell them that I was surprised that in the manual that there is no mention of this potential problem.  Having this at least mentioned as a potential problem would be a good thing to have in the manual, just in case.  The fact that not all insulin pumpers have the ability to afford a CGM that does keep you aware (if you have alarms set properly, etc. etc.) then it could be a potential problem.

   Meanwhile, to be on the safe side, I’ve reported this incidence to FDA and am still trying to figure out how to report it to Health Canada (it’s like looking for a needle in the haystack to find the area unlike the FDA that is very user friendly).  

   Yes, I’m still enjoying using the Omnipod, don’t get me wrong, but at least I’m now aware of a potential problem and will be more prepared, or wearing a tube pump,  and/or MDI to ensure I stay in my happy zone of blood sugar control when I'm flying or experiencing frequent air pressure changes!  Flying should be stress free!!!