The Right to Choice in Diabetes

On referendum day last week, as people were voting, I tried to keep myself off twitter and lower my anxiety levels by catching up on diabetes blog reading.Over the last two months in Ireland the right for a woman to choose what happens to her body has been the main topic of conversation and I, like so many others, was personally invested in the outcome of this referendum. So it wasn't surprising then when I read about the launch of a new insulin pump in Australia last week that I started to think about my choices in diabetes tools and treatments, especially in insulin pumps in Ireland.

At the moment, in Ireland, we only have one insulin pump company serving the community. And as an Animas Insulin pump user with a warranty that expires month, I was a tad jealous to hear that another country was getting an additional choice while we are in such limbo.

What is the state of play at the moment with new pump choices?

Photo Credit DiabetesDad.org These devices are all insulin pumps.

INSULIN PUMPS - NO CHOICE (AS OF APRIL 2018)

Before I go ranting off, I do know that we are luckier that most because we have a government who provides us with the absolute necessities to stay alive with diabetes but that doesn't mean we should be excluded from choices or better treatments/devices simply because they cost more. The “cost” needs to weight against the health benefits AND our quality of life value.

Since the exit of Animas from industry, we currently have only one company providing insulin pumps in Ireland. The Irish health service invited tender applications for a new pump contract last November but we have no further communication beyond this from the health service. We don't know how long it will take to decide or make an announcement on the new contract and if it will be to one company or multiple companies. Not only that but the companies who applied to be considered are forbidden from contacting the health service for any updates also. (!!!!!) 

I’m rooting for multiple companies for competitive fairness and to encourage increased engagement with the patient community to serve their customers better.

WHY CHOICE IS IMPORTANT FOR ME?

There are huge disadvantages to only having one insulin pump company serve our community. We need choices because all insulin pumps are different and I need to be able to choose the one that works best for me. Not just the insulin delivery part but the easy to use factor and the easy to wear factor. This device is attached to me 24 hours per day so it is hugely important that it is comfortable to wear and easy to use.

We also need choices because if we don’t have choices then manufacturers don’t have to be competitive in pricing (see below on insulin choices), don’t feel compelled to make improvements to the products and definitely don’t have to listen to their users.

Here’s a list of insulin pumps we DON'T have in Ireland:

• Tandem T-Slim
• Omnipod
• YpsoPump
• Medtrum patch pump
• Roche Accu-Chek Combo
• Cellnovo
• Sigh!!! :-(

Insulin Pumps available in Ireland at the present time:

• Medtronic 640G
• MiniMed Veo
   

THE CHOICES WE DO HAVE

Blood Glucose Meters - Loads of Choices

When it comes to blood glucose meters I have so many choices. They all do so many different things, some come with Apps, some with wizard tools and switching is easy. We have Ascensia, Accu-Chek, OneTouch, Freestyle, TrueResult, and so many more.

There is one to suit every person with diabetes and their needs. 

Insulin’s - Some Choices

There are a few of choices of modern fast acting insulin and a few choices for long acting insulin. So choice here is limited because not many companies in the world manufacture it, oddly, given the huge profit margin it has in some countries. Yes I’m talking about you, the disfuncional and ridiculous American healthcare system.

Ultimately, I can experiment with all of these insulin’s to find the combination that works best, so the choice of insulin’s is fairly good.

Continuous/Flash Glucose Monitors - Some Choice … if you can afford it.

This might be a little contentious because a lot of these choices are dependent on being able to afford them. If you can’t afford any of these devices financially then you have very little choice because The Irish health service decides if you should get one or not.

However, if you can afford any of these you have the choice of three devices with possibly two more companies coming into Ireland soon.

See more here on CGM Funding Options

Waiting Patiently

For now I am waiting patiently on news from the Health Service and continuously contacting the insulin pump companies even though I know they will be the last to be informed. However, I am sitting on an email address within the health service to contact for more information and I don't think I'm excluded from doing so as a concerned consumer!!!!

25 years with diabetes and I still haven’t cracked it

You would think that after 25 years of living with diabetes I would have gotten the hang of this diabetes craic! That I would never forget to take insulin before I eat or check glucose a lot!

Yet, for the second time this year, I left home for the day and forgot my blood glucose meter. Despite the fact that Every single day, multiple times a day, I leave my house and ALWAYS grab my keys, phone and my meter which also contains my glucose tablets. I, even keep all three of those things together.

NOTE: I did have my CGM so I could still bolus insulin to a number and that was important because it was a family party with trifle, profiteroles, pavlova and cheesecakes. And. They. Were. YUM!

And twice this week I forgot to pre-bolus for breakfast.

Then there was the time I forgot to refill my insulin reservoir and went out to a big pasta dinner.

I’m beginning to think that since I hit this 25th Diaversary that this diabetes craic is getting old, along with me, that I’m starting to feel the same way about Diaversaries as I am about my birthday. And that’s, “Meh! It’s time to stop counting.”

Twenty five years: It seems like a long time and yet, sometimes it doesn’t.

It seems like a long time.

It seems like it’s been forever because life before diabetes was before two children, before marriage, before travel, even before employment. I've done a lot in 25 years!

It seems like a short time.

Thanks to social media and my local support group I know LOADS of people who’ve lived with diabetes for much longer. I’m usually not the person in the room whose lived with diabetes the longest.

I even know a bunch of people who have survived 50 years and then some. I use the word “survive” there because if you had diabetes before blood glucose meters were around it is a miracle that you are still here.

It seems like yesterday because I can remember life before diabetes. However I am wondering how many more do I have?

My Diabetes End Goal

A question at a Diabetes themed table quiz “What is the end goal in diabetes management?” gave me pause for thought. Why is it that I do all that I do? How do I know if I’m doing it right or even well? 

Last January, the Clare Type 2 Diabetes Support group kicked off 2018 with a diabetes themed table quiz. It was really good fun but then again I made up the questions and knew all the answers. Always a bonus! 

Sidenote: When I was in school my friends use to say I should be a teacher because I was good at ordering people around :-S Anyone who has attended Thriveabetes will not be surprised at this. So who put me in charge of a diabetes themed table quiz? 
Answer: I put myself in charge. (eyeroll) What am I like?!?

On the night, there were a couple of questions that were a bit of a challenge for us and it made me realise that sometimes we forget to talk about the basics of diabetes. One question, in particular that gave me pause for thought was:

“What is the best way to avoid developing complications of diabetes?”

People listed all the things that are recommended you do if you have diabetes, such as: eat healthy, exercise, etc. But there wasn’t a single mention of glucose/sugar levels and I have to admit I struggled to answer this one in a short sentence. 

The answer I had “researched” was: 

“Studies* have shown that if blood sugars are kept to as close to normal as possible, you can reduce if not avoid the complications of diabetes.”

The answer might have been a short sentence but the achieving glucose levels as close to normal, well.  Not. So. Much! Then I asked myself, "is trying to keep glucose levels as close to normal as possible my overall diabetes End Goal?" Is it the “why” I do all the things I do to manage my diabetes?

Should I have a goal?

If I don’t have a diabetes goal, then when will I know when I’ve achieved it or do I just not think about it because I’m never going to achieve it anyway :-( So rather than be “goalless”, I decided I would define what my big goal was and the steps I take to get there and I will save it for a day when I’m struggling and may need it to give me a lift. 

What my goal is not!

Is my goal to get my HbA1c under 53 mmols/mol or 7%, but my HbA1c? No, not really. While I do consider trying make that my goal it isn’t something that I think about every day. Plus, it’s not really a good indicator of how well I’m doing overall. There are many faces of a 7% A1c - please read this article from DiaTribe.org for more information on this. 

Photo credit DiaTribe.org - https://diatribe.org/BeyondA1c

My Diabetes Goals

1. Staying alive - I mean that’s a given. I really don’t have to try to do this because I roll out of bed every morning. 

2. Not die - this is a little bit tougher because of insulin which ironically keeps me alive. 

3. Keep blood sugars as close to non diabetes as possible. Within reason. And don’t obsess every single number that is not. 

How to reach my goal

- Check glucose at least 7 times per day or use the information from my CGM. use those numbers to help in decision making.

- Count all the carbohydrates, as much as is possible because it’s one of the variables I can make less variable. 

- Fine tune insulin to carb ratios when they need it. 

- Make some time to review all the information I collect daily. One bad glucose day does not make me a failure and if one bad day turns into three or more days, I will put some time aside and try to figure out where the issue is.

- Stick plastic and metal devices to my body and walk around like a cyborg so I have more information to make more informed guesstimates on insulin dosing. 

- Try to eat healthy as much as possible and get moving. However, I will remember that Enzo’s Fish and Chips is sometimes required. Or beer! Or chocolate. Or cake. 

Done! Now for the “why”

Why I Want to Keep my Blood Glucose Levels in Range:

Because I feel good when all of the above come together.

It reduces my odds of developing any more complications of diabetes as much as possible. Doesn't make the odds zero but lower is better. 

I might be able to stay as health as I can for as long as I can.

My diabetes end goal might be to try to keep those numbers as close to a reasonable range as possible, but I will not think about that End Goal every day. What I will think about every day is all the things that I do every day to manage my diabetes and why I do all of those things.. 

Sometimes I forget why I do all of those things and sometimes because I forget why I’m doing them I forget to do them. So reminding myself “Why” is something I need to do for myself to keep it going. Maybe this is my diabetes end goal too?

Airport Security Hypo

If you live with type 1 diabetes and travel, those three words: “Airport Security Hypo” probably strike fear into your heart. Airport security is stressful enough with type 1 diabetes, even when it goes smoothly but if you throw in a hypo it’s nerve wracking.

I traveled to London last Saturday solo and this happened as I was coming home. I was in line at the metal detector, I had put all my stuff on the belt and that’s when my CGM (Continuous Glucose Monitor) alarm went off, telling me that my glucose levels were 4.4 mmols and dropping ⇘.

Emmm, what do I do???

Do I jump the person behind me to grab my bag off the belt and risk the security agents responding as I would expect? Or do I wait and see if a more opportunistic moment presents itself? I knew I was going to have to volunteer for a pat down anyway.

I choose the, “Well, it’s only going to take a few minutes and I feel fine so let’s assume my CGM is telling a bit of a fib for right now” option combined with the "wait and see" approach. 

I went through the metal detector and it beeped. I was directed to the body scanner which I declined because of the manufacturers recommendations about my CGM and opted for the pat down. This airport likes to do theirs in a private room which means two female agents need to be available. 

So I took a seat and waited. And waited. Thankfully the agent directing the other people through the metal detector had my back and kept checking that someone was coming to me. And another thankfully, I was at the airport way too early for my flight so apart from the threatened hypo I was chillaxed. 

Another 5 minutes went by and I could start to feel the heat of my body increase but I was still functioning and calm. By the time the agent came to usher me to the screening room I could feel the heat turn into perspiration. I thought about asking if I could grab my glucose out of my test kit. But I really wanted to get this stress over with so I could relax. And I didn’t know how it would be received. These seemed like really nice, jolly agents but I did not want to push it. 

I want to point out this was a choice that I made and take full responsibility for but I didn’t feel at any point that I could not ask for help. 

The screening was over with in less than ten minutes and I was reunited with my bags. I could feel my hypo symptoms increasing but not at the pace of a hard crash. So I moved away from the checkpoint and gathered myself. I took some glucose and decided that even though it was a little early for dinner I was having it. I could feel the glucose tabs were already starting to work as I ordered but I was starving. So hungry that I "hypo-ordered" the biggest thing on the menu with a side. And I finished it. I was stuffed but I cleaned my plate.

Inject Correct-ly

Approximately 90% of the diabetes community in Ireland use insulin pens to manage their diabetes. A study published in 2013 claims the two thirds of the injecting diabetes population has lipohypertrophy - BD Medical (Becton Dickinson) was involved in this the largest study of its kind.  

Last week, on one of my multiple trips to Dublin I was invited to attend an engagement workshop and factory tour organized by BD Medical (Becton Dickinson) where the word lipohypertrophy came up multiple times.

BD Medical manufactures disposable insulin injection pen needles in their factory in Dun Laoghaire, Dublin. They also used to manufacture our hypodermic disposable syringes for those of you who may be old enough to remember mixing insulins.

There were three people with diabetes in the room of about 30 people and a number of clinicians. I brought my personal experience of living with diabetes and some general experiences I observe of my peers in real life and in the online community. But it was really interesting to hear from a diabetes nurse specialist and what she commonly and uncommonly sees in clinics and how they approach new patients and patients who are struggling with their diabetes management. 

We took a break from “workshopping" to hear from Mike Smith, BD’s Clinical Marketing Manager, who presented an informative talk on lipohypertrophy, which is something BD is very passionate about and BD was instrumental in producing the Forum for Injection Technique (FIT) guidelines to reduce the risk of lipohypertrophy and to make sure you are getting the best out of your insulin delivery. Here is a more PWD friendly version of those guidelines. 

Approximately 90% of the diabetes community in Ireland use insulin pens to manage their diabetes. This might be surprising considering all the chatter on social media relating to insulin pumps.

I have always assumed given how often we might inject ourselves with this potentially lethal drug that being taught to inject correctly would be a high priority with healthcare providers. 

However, the Blanco et AL 2013 study sponsored by BD showed that lipohypertrophy was present in:

• 76.3% of Patients with Type 1 and 
• 56.1% of patients with Type 2

This study determined that the reason for such high number of LH was concerns over injection technique. This was probably the “largest survey (the Injection Technique Questionnaire) ever done concerning insulin injection technique in more than 13,000 insulin-injecting people with diabetes from 42 countries.”

What is lipohypertrophy or LH?

“ Lipohypertrophy is a medical term that refers to a lump under the skin caused by accumulation of extra fat at the site of many subcutaneous injections of insulin. It may be unsightly, mildly painful, and may change the timing or completeness of insulin action.” https://en.wikipedia.org/wiki/Lipohypertrophy

What causes Lipohypertrophy?

 “Repeated insulin injections in the same location can cause fat and scar tissue to accumulate.”  Also caused by reusing the same needle more than once. The more you reuse your needles, the higher your chance of developing this condition. One study found that 46 percent of people who developed lipohypertrophy reused needles." From Healthline.com.

How does LH affects your insulin absorption?

“Areas of lipohypertrophy can cause delays in absorption of medication administered to the affected area, like insulin, which can result in difficulties controlling blood sugar.” From Healthline.com. 

What is the Correct Injection Technique and why?

DiaTribe.org condensed the Mayo Clinic’s “Six Sets of Golden Rules to Assist With Implementation of the New Recommendations” into an easy to read page. 

These Golden Rules include:

• Consider your needle length (4mm for pens, 6mm for syringes). 
• Rotate injection sites
• Do not reuse needles.
• Don’t reuse needles.
• Prime your Pen before injecting. 
  • "Dial two units on your pen and then press the button to shoot some insulin into the air to make sure it works. This is called an “air shot” or “priming” the pen. If you do not see at least two drops of insulin after repeated priming, do not use the pen. This indicates there may be a problem. The cartridge could be empty or the pen may not be assembled correctly." From BD’s Using Insulin Pens and Pen Needle Guide.

DISCLAIMER - BD paid for my travel expenses and accommodation to enable me to attend this workshop and patient engagement event.

The aim of the workshop was to introduce the newly established Irish based research and development team to the world of living with diabetes, specifically type 1 diabetes. What are the challenges that we face every day, what living with diabetes is really like, etc.

 In the grand scheme of my diabetes management preventing LH is not high on my priority list because beyond being aware that it exists and rotating my injection sites there doesn’t seem to be anything else I can do to prevent it.