Where Have All the Test Strips Gone?

Imagine if you were told you were no longer allowed to access the tools that you needed to make proper decisions about your diabetes care. In a disease that requires us to constantly analyse our healthcare decisions, how would you manage your highs and lows if you didn't know they were even happening? How do you know how much that extra mouthful of dinner affect your glucose levels? Does the thought of having no way to tell how your body is being affected by your diabetes scare you? 

Stop imagining. This is now the reality for a lot of Australians living with Type 2 Diabetes.

"From July 1, all people with type 2 diabetes who are not using insulin can purchase an initial six months’ supply of subsidised blood glucose test strips.

After six months, people with type 2 diabetes who are not using insulin can access subsidised test strips if their doctor or an authorised health professional wants them to continue testing. This change follows the independent advice of the Pharmaceutical Benefits Advisory Committee.

Importantly, if a person needs access to subsidised blood glucose test strips for clinical reasons, they will continue to receive access. This may include people with gestational diabetes, on certain medications or people with inter-current illnesses."

Its hard to process exactly how awful these changes really are. I have Type 1 Diabetes, so I will continue to recieve subsidised test strips. However, all types of diabetes can end in the same dire consequences if we are not given the tools we need to adequately control our diabetes. 

The message that is being given to people with Type 2 Diabetes is that their diabetes care, and by extension, total health care, is not important or a priority. That their feet, eyes, kidneys or even lives are easily expendable in order to subsidise the debt and expenditure of Queensland Nickel. 

Many of the messages that people with diabetes see about their disease are the messages of prevention - the message that you should not end up like us, to be healthy, exercise, eat well, take the stairs, quit smoking and never drink alcohol. Yet in this case, that message is quite the opposite. Blood glucose testing is a reliable, in the long-run inexpensive way to prevent complications that are far more costly to the healthcare system than test strips. Furthermore, people with diabetes are encouraged to enjoy a healthy lifestyle to help prevent these complications  - but being healthy is much harder when people with diabetes are being denied access to an integral part of their diabetes care. Oral medications for Type 2 Diabetes can cause hypoglycaemia, which can be very dangerous, and needs to be treated immediately. Exercise may become a thing of the past to those who do not have access to test strips, as it can be very hard to manage safely, which anyone using any form of hypoglycaemic agents will know. 

Without access to blood glucose testing supplies, how do those with Type 2 Diabetes know when its time for them to move on from diet control to medication, and from medication to insulin? Without test strips, a person might remain hyperglycaemia for months on end with no idea, especially if they are not receiving regular HbA1c tests (which, with the changes to medicare subsidies for pathology tests, is more likely. I have even told my doctors that I will be moving from 3 monthly to 6 monthly blood tests in light of the extra costs). In some early-stage Type 2 Diabetics, where they are managed by a GP, they might only have an annual diabetes check-up. You also have to include those patients that are not inclined to seek medical advice often, and may ignore high symptoms if they are not encouraged to test their blood sugar levels.

The fact that there have been no provisions made for a patients right to take control of their own health is appalling. As stated, the ability to procure subsidised test strips will rest entirely with health professionals, and if they want the patient to continue testing. This further alienates the patient from their own healthcare, if they are not given the right to decide how closely they wish to monitor and control their own chronic illness. Access to doctors in some areas can be quite limiting, and this could negatively impact on the ability of a patient to receive that recommendation that they should continue testing. 

Having done my licence renewal recently, I note that this new policy doesn't seem to account for the requirement for anyone on any hypoglycaemic agent, oral or otherwise, to test their blood glucose levels before driving to ensure that they are above 5 and safe to drive. 

The implications of the decision to limit access to blood glucose testing strips to people with Type 2 Diabetes are already there. I hope that they will be realised before irreversible damage is done to any individual with diabetes.

Credit: Insulin Nation

Leaving the House with Diabetes in Tow

I do a lot of cleaning in my life. I like order, neatness and surfaces with nothing on them. My house probably gets 'spring-cleaned' 4 times a year. Once I'm done spring-cleaning my house, I'll move on to my paperwork, my computer & my emails.

I'm up to emails right now, and I'm happy to say I only have 4 emails in my inbox, all with actual useful information in them.

One of them, I can delete once this post is done. My husband sent me the picture below, and I never did anything with it until now. There was no explanation in the body of the email. There was no body of the email at all, just a subject line of "You Perty" (Thanks Hun, you perty too).

There wasn't really an explanation needed. We don't have kids. I do have diabetes though, and that's close enough. 

Some very bad photoshop skills later, and this is what I came up with:

Welcome Back King

At 1.30am on Tuesday morning I should have been sleeping, but I wasn't. Ignoring the fact that Brisbane was still almost too hot to exist at 94% humidity (Seriously Brisbane, we're mid-way through Autumn now), I had another reason to be blearily rubbing my eyes and yawning out any and all curse words I could think of. I was happily tossing and turning, kicking the sheets away and generally taking over as much bed space as possible when my husband shook me awake.

My pump was blaring away about something. I mashed some buttons, assuming it was nothing I needed to know about. It blared again, so I forced myself to crack open an eye and read the screen. Some sort of message about power failure and basal being stopped. I sort of knew it was coming because it had asked for 2 battery changes within 48 hours. I probably should have called the helpline then - but laziness and denial are some of my best friends. If I had called, I would have found out that apparently you can fix that particular power failure problem yourself, and it would have saved a lot of hassle afterwards. But 1.30am. 

I was tired and I just wanted to go back to the land of nod. I decided to set up my back-up pump, took the battery out of the malfunctioning pump, and shoved it deep within my sock drawer while it continued to beep about it's battery being removed. 

I called the helpline the next day, and they talked me through the power failure. Unfortunately, I had already set up my back-up pump with a sensor. I had swapped the transmitter to my old MiniMed transmitter when the pump malfunction happened, not wanting to waste a sensor that I had only put in 3 hours beforehand.

I am pretty impressed with the life of my MiniMed transmitter. I think that transmitter warranty life is about a year, but it has been kicking along for 3 and a half years now, and still holds charge well, whilst somehow seeming to give more accurate readings the older it gets. Though that could just be that I know all the tricks now.

So at least I have my back-up transmitter and pump working, but it's driving me nuts. I'm definitely a spoilt princess of diabetes land, and I'm used to my new technology.

I have to press the esc button to see my sensor readings, rather than having a beautiful, colourful graph and SG displayed on the screen at all times.

The sensor doesn't suspend before low - only on low. I actually have to treat hypos myself. I have a toothache right now because I've been having to have juices, when normally the sensor just catches me and I don't even think about it.

I have to scroll into a menu to set a temp basal. Being my lazy self, it just means that I haven't set a temp basal since swapping onto the old pump. With the 640G, the shortcut to a temp basal is on the screen, and only takes 2 seconds to set-up.

My meter doesn't connect!!! I have to save things manually in capture event. Sadly, my educator will just have to scroll through my meter because I am not bothering to capture that many events. And wearing a dress this week has been hard, not being able to bolus from my meter. Many, many strangers have seen my undies this week.

Don't get me wrong, I still love the old MiniMed, but I am so used to the 640G and its more intuitive programming. I swear, it can tell what I'm thinking and what I need. Its just a lot less thinking and time spent actually using the pump on my part. I kind of just let the 640G do its thing.

Thankfully I am connected back up to the 640G again with a new sensor due to start tomorrow morning. I'm going to treat this as an exercise in the art of appreciation.

NDS-What?

A week ago I received a letter in my mail from the NDSS, informing me that the way I received my pump consumables would change. I vaguely glanced at it, shrugged, and aimed it at the garbage for 2 points. I'd had a stressful week and wasn't in the right frame of mind to really comprehend what that horrible little letter contained, but it was still in the back of my mind.

The contents of the letter were dragged from the depths today when I had an email from my pump company, Medtronic, wanting to warn pump users of the impending consumables apocalypse. 

"Whilst the change-over date has been made clear, the timing and process for the transition is still very unclear...we are unsure of the impact of the transition and how you access your pump supplies during May and June....

To ensure you don’t run out, we urge you to consider stocking up now. This way you will have peace of mind during the next 4 months of supply transition."

This email was in response to the recent announcement:

"The Federal Government has announced that it will implement changes to the National Diabetes Services Scheme (NDSS) from July 1, 2016...diabetes-related products will no longer be distributed through Diabetes Queensland or via other agents of Diabetes Australia interstate.

  

From July 1, subsidised NDSS products, such as needles, syringes, blood glucose test strips, urine test strips and insulin pump consumables will remain available, but through community pharmacies.'

From what I can gather, based on the wording in the article, is that this was a Federal Government decision, and not a good decision. I'm guessing that they think having pharmacy point collection is a good way to cut costs, either through being able to cut funding somehow if DA is no longer needed as an access point, or by cutting postage. Probably a brutal-budget mix of both.

The email from Medtronic today was essentially to say that so far, the federal government hasn't felt the need to clue them in on how this change of access points is going to happen. In an online-group discussion tonight, it was pretty clear that no-one knew how it was going to happen - including those group members who worked in NDSS pharmacies. 

At this point, the alarm bells going off in my brain have moved beyond a constant ringing to full-on emergency bomb-blast sirens screeching.

If the pump companies themselves and the NDSS access point pharmacies don't know what's going on, its probably time to panic, do as they suggest, and start hoarding supplies for the long haul. Winter is coming. I'm not trying to be a dramatist or anything, but I did just max out my bank card bulk-buying enough supplies to last a good 6 months.

I can only imagine that this warning telling everyone to start stocking up is going to impact on pump consumable stocks. Black-markets for hard-to-find pump supplies will start popping up soon. I better work on my haggling skills, and be ready to trade my first-born.

What's not also clear is:

1. - What the deal is for those who live rurally? They are likely to be impacted quite a lot by this move. Rural pharmacies may also be less likely to stock items if they only have 1 customer buying the product.

2. - How pharmacies will handle this in terms of stock levels? One of the reasons I like ordering online so much is because I can bulk order - and I always have, I usually order 4 months worth of supplies at once. Bulk ordering comes in handy not only for lazy people like myself, but those who are wanting to travel (I ordered so many supplies before I went overseas!), and again, those who live rurally and remotely. Pharmacies often place irritating self-imposed limits on how many of one item you can buy - for example they may allow you to only buy 1 or 2 boxes of test strips at a time. This will limit the ability to bulk order

3. - How are pharmacies expected to stock the necessary consumables? The test strips that I use are not stocked in store - presumably because pharmacies tend to only stock a few different types of test strips due to space restrictions. Same goes for pump consumables. Where are they finding the room to keep all the many, many different types of strips, reservoirs and canulas? Will they just have a wall devoted to diabetes care? With the amount of pump users in Australia, its not likely.

4. - If they're not stocking the consumables in store, are they ordering them on an 'in-demand' or 'special-order' basis? If so, how is this any different at all to letting us just order through DA? Same amount of postage because they'd just be getting small shipments in for each customer all the time. They wouldn't be able to wait until a certain amount of orders were reached - because again, there's not many Type 1's to begin with, let alone the much smaller number on pumps.

Another factor to consider, that I highly doubt the federal Government has even thought about it, is that this may directly impact on donations made to DA. Thus cutting support even further. I always include a donation every time I order - I factor it as 'postage costs' (seeing as we don't pay postage) and just hand it over as a donation instead. I don't miss the donations that I make, because they're small enough not to impact, but they can tot up to a fair bit over the year. I will of course still donate, but I run the risk of not remembering unless reminded. 

 I'm going to need to see a proper plan before I'll start to believe that this was ever a good idea on the federal government's behalf. Until then I'll be making sure I keep my hoard of supplies well stocked.

Cured: simple as that

I always start my weekends off with a good hourly dose of the newest Greys Anatomy. Because its Friday. And Friday night is the night I usually watch Greys Anatomy. Monday night is my night to cook. Tuesday night I don't go and visit my mother. You get the Flight of the Concords gist of things...Friday night is Grey's night, because that's the night the newest episode gets released.

Greys Anatomy is obviously taken with a very large grain of salt when you look at it from a medical viewpoint. I don't watch it for the medicine. I watch it for the Grey  & Mcdreamy get together-break up when Mrs. Mcdreamy arrives-get back together when Mrs. McDreamy leaves to start Private Practice-break up again-Grey sort of dies-Grey lives-Grey & McDreamy get back together-Grey and McDreamy adopt random African baby-Grey and McDreamy have own child-McDreamy works away from home-McDreamy dies-Grey has dead McDreamy's baby-drama. (Times this drama by every character ever. It's exhausting, but worth it for the mental workout you get trying to keep up with it all.)

On Friday's episode, the doctors at Grey Sloane Memorial Hospital (formerly known as Seattle Grace Hospital) did what they do best - performed a complex and probably improbable procedure to 'cure' a patient of his multiple sclerosis. If I ever develop any sort of super weird-hard to cure medical condition, Seattle Grace will be my go to hospital. Those doctors can solve all the crazy rare disorders.

Which is a problem, from an awareness point of view. It means the audience isn't ever set up to learn more about the medicine. What do I know about MS from watching that episode? I saw his hand shake a little, occasionally. That's it. I didn't expect to see all the complexities of living with a disease like MS, but I would have liked to have seen some. Disease can be quite character building, but instead I was distanced from the disease. Made to feel like it was unimportant, and the realities of his every day life were belittled. Focus was shifted entirely from the characters' MS (the entire reason he was even in the episode) and instead honed in on his suave pick-up lines, with the disease relegated as an itsy bitsy sub-plot built in to simply further a bit of fluff romance.

If the print and screen world is constantly curing everything, there's no chance to show what the condition is like in real life. It's lazy, and it says to the audience that those of us living with medical conditions aren't worth taking the time to learn about, or accurately portray.

When dealing with medical conditions in T.V. shows, writing, or any other media, there is a tendency to create the cure, rather than deal with the condition in a practical and realistic way. Maybe because it makes the plot too complex, or because writers and creators think it will be too hard to constantly factor that condition in. Maybe they worry they will lose audiences if they haven't learnt to sift out the mundane details of living with a disease, illness or disability from the really cool stories we pick up along the way.

Whatever the reason, there's a solution: Go and talk to a living gold mine; someone with the disease themselves. Get the basics, tell the basics. Get the humour, the happiness, the sadness, the fear, the anger, the community and tell that side of the story. You don't need to focus everything on the disease, but don't include a disability or otherwise to simply cure it 5 minutes later. Such lazy writing serves no purpose other than to illustrate a lack of compassion and understanding on your part, and to tell audiences that you are not creative enough to get to a particular plot point without disrespecting the experiences of your own characters. (And by extension, the real-life versions that you have based them off).