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

Life as a Podder Chapter Deux

Well, with the approach of  the New Year I decided to go back to my Animas Vibe after having  issues with the Omnipod in my leg as well as dislike of the PDM (more on that at end).  My legs are an occasional place that I put my infusion sets in but I never had blood sugar results like I was having with the pod … high high high (my meaning of a “high” is anything above 12 mmol/l  or 324 mg/dl ).  Compared to where I had placed the Pod in other areas of my body over the month … it rarely went over except when I didn’t either bolus properly for food, etc.  So obviously, my legs with the plastic cannula … just do not work.  As you can see by the assorted pics below, with the 2^nd pod placement … with what looks like watered down blood … maybe the infusion set wasn’t placed quite right, but the window that you can view the placement of the infusion set, is pretty well impossible to see if things are okay. 

I guess my other thing with going back to the Vibe, is the simplicity of changing the suggested amount of insulin, either with using a different ISF or I:C ratio in the calculations that Animas programming allows you to do (see photos below when I'd decided enough is enough with the Omnipod).  The Omnipod PDM doesn't allow you to do this, along with extra steps to see what IOB you have onboard, tick tock tick tock ... my time is precious.  On the Animas below you can change the suggested amount to bolus based on the calculations of the “set” ISF and/or I:C ration.  To give Omnipod at least a run for it's money, I tried and tried with both user manual and forum groups to figure it this was possible … but nope – not doable.  I have a feeling the Omnipod PDM programming is abit on the “basic” side, and more for the person who perhaps doesn’t want to go outside of what the program in the PDM allows you to do.  Probably for the safety of the user, but not all of us follow the rules.  This has been my way of controlling my diabetes over the past 40+ years since leaving the next of home as a teenager.

 I was finding too that when I was really high with the Omnipod … like really high … DKA possibility … that correcting with an insulin injection, based on my calculations (this is what I do when I’m on MDI … using either my noggin’ and or calculator to determine amount of insulin to inject) … would bring me down much faster.  Otherwise, putting that large glob of insulin via the Pod was almost like putting water into me.  Even with doing a split shot of the amount over ½ hour … it just didn’t work well.

Plus, again, that friggin’ huge PDM (yes the clip pouch I was given, more bulkier than a tubed pump IMHO).  I found in the beginning of the months trial as a Podder, that when I was needing to bolus quickly, I often was going to my waistband, where I usually keep my Animas.  

One thing that I did do by accident during the trial run, near the end ... due to how itchy the pod was on my skin, and that was only at the end of Day 1 (this was the only time I had irritation with the pod) . Because I didn't want to lose the insulin left in the pod (would Omnipod have replaced the pod because of that???) ... I stuck it out.  By the time came to remove it, by accident, when placing a new pod in place, without thinking ... I REMOVED A NEWLY INSTALLED SENSOR FOR MY DEXCOM!!!  I broke down at that point, and my hubby gently reminded me it was not the end of the world removing the CGM by accident.  Because I pay out of pocket for the Dexcom, it meant I went for 6 days without the CGMS.  And even now, as I write this, I'm taking a break from the Dexcom so I'm not out of pocket ... but I do miss the CGM the most for staying in the right range I like of blood sugars.

What has me abit miffed, and not just with Omnipod, but also Medtronic.  That the devices they are offering Animas users sort of like “old stock” to be able to make a profit I expect (in Medtronics case they are offering us the MiniMed 630g ( see this link  https://www.medtronicdiabetes.ca/minimed-630g ) .  I recently came across an article about the Omnipod Dash System (read more at these links https://diatribe.org/insulet-omnipod-dash-system-to-add-touchscreen-and-bluetooth and https://forum.fudiabetes.org/t/omnipod-q3-earnings-call-dash-pdm-update/2576 ).  The Dash was expected out in the 2017, but it’s set to launch sometime in 2018.  So, for any Animas users that are getting the “free” PDM offer (which is what I went for) … you’d probably want to upgrade to that, but at what COST is my big question.  I just know that my fingers got split with pushing those darn buttons on the PDM (doesn't help with the cold weather we've been experiencing that's not normal at this time of the year and lack of humidity).  I found it easier to use if I  kept some of my finger nails longer, in order to ease up on bloody thumbs/fingers.  It was abit annoying since I like to keep my claws clipped.

So, that’s it in a nutshell.  I’ll be heading out on holidays for almost 3 weeks, and bringing along both insulin pump systems (yes, have carry on – you can travel with all your medical crap <lol>).  I’ll also be bringing my pen needles, using Fiasp and Levemir as my insulins of choice for control.  Last time I went on a 3 week trip, all I used was MDI, sans CGM (I’m on fence post right now with bringing CGM for this holiday due to the space it takes up for souvenirs <lol>).

See you sometime in February and thanks Boss’s for letting me off the hook for abit of much needed down time from work!

NB:  Remember, my trial with the Omnipod may vary from yours.  So while I may not like it, doesn't necessarily mean you won't.  I've heard through the grapevine that Omnipod is offering the deal up to March now, rather than the end of December.  If you've ever wanted to know what it is like to pump insulin without any tubes, I'd say give it a try.  Perhaps your experience will be much better than mine has been.

Life as a Podder

Okay – well at least for a month – I’m being a Podder … and for those of you who are wondering … WTF is she talking about ??? ....   I’m using what is referred to as a “tubeless pump” for pumping insulin through my body 24/7 called the Omnipod.  A plastic mini-me type of insulin pump is replaced every 3 days on your skin (if you’re lucky enough to not have it fail as you’ll see below).  

I’m now approaching my 2^nd week as a Podder and the notes I’ve made up so far on how it has been going will hopefully help any Canadian on the fence post as to which of the 2 current pump manufacturers we have as an option with Animas exiting the pump market (NB – you can still use your current Animas pump – get supplies well into 2019 – so do not think you have to jump ship just yet – it’s just you’ll be buying your supplies from Medtronic eventually once Animas closes up shop – sigh).

As far as purchasing Omnipod supplies, especially if you are one of the Canadian provinces that have a pump program, the price tag of $300/month for the pods will go over and beyond what you might be paying for a tubing pump.  For some, that can be a deal breaker, especially if you do NOT have private insurance/work insurance.  In Canada, you also have to buy the pods directly from Diabetes Express .

My first few pods I used before the meet up with the rep from Omnipod were from a former Podder who for one reason or another, decided to go with a tube pump.  The funny thing, was the pods I used from them are newer, but they are the ones that I had problems with.  The 1^st one alarmed with “OCCLUSION” about 2 hours before the Pod would shut down for a new one to be installed.  The 2^nd pod, after 1 ½ days, just “FAILED”.  I went through the steps to get it to work again, and after a few futile attempts, had to remove the pod, losing about 50 units of NovoRapid.  I was NOT to happy with that since I have no insurance anymore, but I just told myself, this is an EXPERIMENT.

After that, I started to use the pods that the Omnipod rep had given me (and these are older manufactured ones than what my friend had donated to me).  So far, with only filling the pods up with the minimum amount of insulin ... NO PROBLEMS to report to date!!! 

Now for my beefs (isn't that a cute cow or what?) with the Omnipod so far, is the PDM (Personal Diabetic Manager) – which serves as your blood meter as well as for bolusing for meals and/or corrections … and setting up the programming for your pod on your body.  It’s abit dated due to not touch screen and it’s so bloody big!!!  I still keep on occasionally reaching for my waistline where I used to clip my Animas Vibe, to  bolus, etc. – then having to remember where I left the PDM (I now have a system - which works most of the time - yes - you can teach a cat new tricks)!   I also find it takes longer to punch in everything into the PDM to get my juice of life infused into me for a meal and/or correction (though I'm getting faster now - but I find more thinking is required than my Animas Vibe).  If you do misplace the PDM, the pod will continue to disperse basal insulin, nothing else, but f the pod starts to alarm, and you don’t have your PDM on you, you have no idea what it’s alarming for.  NB Rep did give me a belt clip case for the PDM, but it’s kind of useless since you still require the test strip container and finger pricker – and there’s no room for either of these.  So I am designing a little wristlet to fit everything in (yes .. I am such a Fashionista).

Always, always have a spare pod, insulin, gunk remover, alcohol etc. on hand.  I know people who inject, or use tube pumps are always ... ALWAYS ... supposed to have those with them every time they leave the house.  In the case of the Omnipod, if it starts screaming, and it can't be resolved with following instructions on PDM, you will have to remove and put a new pod in place (tip - always have an opened paper clip to mute the bloody thing - been there done that - and it is all in the very detailed instruction manual supplied with the PDM).  So, with an tube insulin pump, if you're a 15 minute drive away, and haven't got supplies, it's abit less stressful and not go bonky with a screaming pod. 

One of my other concerns originally with Omnipod was the large amount of adhesive along with the 60 degree 6.5 mm cannula.  I’ve not had much luck with plastic cannulas over the last 8 years of pumping with Animas, so stainless steel 90 degree sets are what I’ve always used, and when removing the sets, you would never know I had been infusing insulin, along with no skin irritation from the adhesive.  So my other beef is, where my insulin has infused the cannula … there’s a hard small lump underneath the skin.  I never had this with the Animas sets, so have been closely watching how the area heals (so far it seems it may take 2 weeks for the lumps to go away).  I was wondering how people who are insulin resistant – and take more than my normal 2-4 units each time for a bolus or correction  - if they experience this - and how long it takes to heal.

Now for bonuses of being on the Omnipod !  I feel quite free without any tubing (oohhh cannot wait for a romantic weekend with the hubby).  Oh, and last weekend I went thrift shopping, and usually when trying on clothing, it takes forever with unclipping pump, etc.  With no pump clipped on me, or bulk of pump … badda bing badda boom … I feel like a fashionista again … though … damn … where did some of those extra rolls of fat come from ? <lol>

There is less waste of insulin, that's if the pod doesn’t fail!  Usually with tube pumps, we have to fill our tubing, which we can’t reuse again (some do, but I wouldn’t recommend it).  So, on average, I’d lose about 10 units of insulin.  With the pod, filling it up to exactly to 3 days worth of insulin, I’m seeing about 2-6 units wasted.  NB:  I have been using Fiasp a few times for last minute meals via MDI, or a correction over 12 mmol/l (very rare these days) – so in reality – I might have run out of insulin before the 3 days is up.

One caveat is the Eco-pod Disposal Kit available free of charge from Diabetes Express.  I hate the amount of garbage that our gadgets we use for health creates on our big blue marble.  According to my rep, some items can be recycled.  I hope so!

The other great bonus though?  It uses FreeStyle test strips – yippee – small droplet of blood – more accuracy!  I sadly am almost out of the strips I was given, so back  to use my One Touch since I have lots of those test strips.  

So, that’s about it in a nutshell - I'll carry on testing it out until the last pod is used up, and decide from there ... should I stay or should I go ... back to Animas or just MDI.  If you’ve not caught my posts on Instagram and/or Facebook you’ll be able to see some extra pictures and discussions.