Funding the Freestyle Libre

The long, long, long, long, long, long awaited Abbott Freestyle Libre has been officially launched for sale in Ireland on November 1st. Click here to purchase. The Libre is a less invasive method of checking blood glucose levels and provides a profile of blood glucose trends in a graph on a reader device for up to 14 days. And for most people with type 1 diabetes, the finger prick blood sugar check is not the worst part of living with type 1. But, the not knowing what your blood glucose is between finger prick to finger prick is a crucial missing piece of the living with type 1 diabetes puzzle.

I was very honoured to be invited to an advance briefing on the Abbott Freestyle Libre with several other members from the diabetes blogging community on October 13th.

(DISCLAIMER ALERT!!) Abbott paid for my travel expenses from Clare to attend but they did not ask me to blog about or influence my opinions of the Libre. I was asked to try out the Abbott Freestyle Libre with two sensors and given them for free.

CONFIDENTIALITY - we also had to agree to not discuss our briefing outside of the room until the media embargo was lifted on November 1st. This was really difficult, I think for all of us as members of the diabetes community and not being able to talk about it with our community. This was really difficult!

I have been following the Libre since it’s launch in the UK a couple of years ago. I don't think there is any doubt in anyone's mind that the Libre will revolutionise diabetes care, especially in Ireland, and more importantly, improve the quality of life for many people living with diabetes. The launch of the Libre in Ireland will give more people access to the blood glucose data that has only available to very few who have been able to acquire CGM systems.

I feel that my opinion of the Libre may be different than most people who are buying it, in that they are moving from finger prick blood glucose meter checking to the Libre. I, on the other hand, have been using a CGM for a year, so the information “wow” factor didn't exist for me when I fired up my Libre because I had that information "wow" factor (“Really, that’s what two slices of toast does to my BGs!”) a year ago.

I may do a full review of how I found using the Libre in a later post but for now I want to share some of the information I learned from the briefing and from making some phone calls about funding the Libre.

As you may have heard, the Libre is not available on the government funded Long Term Illness Scheme which provides all approved diabetes medications and supplies free of charge. Yet!

Abbott could not comment on what stage they were at in the procurement process with the HSE Long Term Illness scheme. And declined to offer a contact within the HSE that we could chase after - I suppose who could blame them. So, for now, here are a few tips that may help you cover the cost of the Libre.

The Libre starter pack of two sensors and a reader costs €169.90. After that each sensor costs €59.90 and if you break or lose your it will cost €59.90 to replace it. It is a big financial commitment for a person living with diabetes and here are some options to help with the covering the cost of it;

Tax Relief through the Med 1 Form

One option available to everyone is to claim tax relief via the Med 1 form from Irish revenue. This will reimburse you 20% of the cost of the Libre and subsequent sensors every year. You just need to keep your receipts from all your purchases.

Private Health Insurance

The other option that may be available in the near future is that there are at least two health insurance companies who provide benefits for a an approved Medical Appliance purchases. I spoke with Laya Healthcare as they are my insurer and only share the list of approved medical devices with members. Currently, there are no blood glucose monitoring devices  listed on Laya’s Approved list of Medical Appliances, only a Glucometer. Laya reviews their list annually, so I have hopes that all glucose monitoring devices will be included in the near future.

Initially, the cost of the Libre might seems expensive and does add up, it's not anyway close to the cost of a Continuous Glucose Monitoring System. And they value of the information it provides you with to help manage your diabetes better and more effectively is priceless.

The Big Blue Test

This year, one of the things I am doing for World Diabetes Day, is taking part in the Big Blue Test by Diabetes Hand Foundation. Between October 14, and November 14, participants perform physical activity and then report their results at BigBlueTest.org or by using the iPhone or Android smartphone app. Each entry will result in $1 donated to three diabetes charities ($3 total; up to $5,000). And people who do not have diabetes can do it too!!!

Why?

Well, because it's simple. It's easy. It doesn't cost me anything, and it's giving to 3 diabetes charities. One of those charities is a global support organisation for women with diabetes. It's just a good idea and I'm hoping that some of you will think so too and join me?

I’ve already log one #BBT on Thursday Oct 20th.  My blood glucose level, before my walk, was 10.4 mmol. My BG after my 25 minute walk was 6.9 mmols.

What is the Big Blue Test BBT?

The Big Blue Test is a diabetes awareness initiative that was started 8 years ago by an American non-profit organisation, called the Diabetes Hands Foundation (amazing organization worthy of another post). The BBT is about how one small change can have a huge impact on your health; if you have diabetes or not.

Results gathered over the lifetime of the program demonstrate that just 14 minutes of exercise has the potential to decrease participants’ blood glucose levels, in some instances as much as 20% (Type 1's should pack glucose;-D).

Not only is The Big Blue Test encouraging people who don't have diabetes to exercise and creating awareness about diabetes, but it's creating awareness in our own community about how effective even a little bit of exercise is as a diabetes management tool.

How do I take the test?

Taking the Big Blue Test is easy: If you have diabetes you test their blood sugar, if you don't have diabetes, don't check your blood sugar. You exercise for at least 14-20 minutes. Test your BG’s again (if you have diabetes), and share the experience on BigBlueTest.org or through the app for iPhone or Android.

So are you game for the Big Blue Test?

Diabetes Misrepresented

This post is a reaction to the broadcast of BBC’s Panorama programme “Diabetes: The Silent Killer” which aired Thursday September 29th. Since the programme aired the makers have issued an apology but I feel that it fell short. They only apologised for one medically incorrect statement. I didn't watch it out of protest of the scare tactics used and the sensationalism, but in hindsight, maybe that was not the best way to protest? However, I am so glad so many members of the diabetes community were wiser that me and watched it, even though it was hugely distressing to them. And they voiced their outrage on social media at the complete misrepresentation of all types of diabetes and the complete disregard for medical facts.

However, what was upsetting to me was the tweets from outside the diabetes community who swallowed every piece of information as truth and responded about how people with type 2 diabetes were such a drain on the economy and tweets like "bad diet = type 2 diabetes". I felt they believed that we are awful people and absolutely didn't deserve any sympathy or help.

But what was more upsetting  and heartbreaking were some of the tweets from the type 1 diabetes community, echoing those sentiments. Reading those comments just broke my heart. We are all in this together. All types of diabetes are unrelenting and difficult and suck. Just because you have type 1 diabetes doesn't give you the right to say "other people deserve to get their diabetes but not me, I'm special and deserve sympathy!" Because that's what you are saying Every Single Time you say type 1 diabetes is not caused by a poor diet or lack of exercise.

I believe that getting the type right or being type specific is NOT more important than getting diabetes right!

Dear Blog, I missed you

Writing blogs posts is so therapeutic for me and my life with type 1 diabetes.  And in the last couple of months, I've had so much I wanted to write about and no time to do it while we were organising Thriveabetes. So now that Thriveabetes is over for another year, I thought that I would end up bored because I have so much free time. Yeah right!!! There is so much going on in the diabetes world right now, so many events I want to attend and I'm still struggling to keep up. This week the count is five diabetes related events for me in the next seven days. All of which I'm excited about because only two of them I'm organising, the rest I get to sit back and hang out with my diabetes tribe. I really, really enjoyed meeting old friends, Kieran, Ger, Michael, Carmel, Cyril, Pauline & one of the other Grainne's, and new friends; Cliona (sorry I didn't get back to chat to you proper:-(, Deborah, Linda and Barbara at the Type 1 Diabetes event in Galway the night before last. And lots of thoughts in my head to post about later!!!!

Thankfully though, none of this madness has an, umm, unexpected, effect on my diabetes. Sure,  there have been a couple of bumps, but nothing has hit me from out of the blue. And this year with Thriveabetes, my stress levels were much more manageable . Instead of a month long period of elevated blood glucose levels it was condensed down to 48 hours:-) My bloods sugars only went completely nuts on the trampoline once I arrived at the Killashee hotel on Friday evening. As for the Saturday morning of the event, I think everyone I bumped into as I was running back and forth that long corridor from room to room can bear witness to my stress levels. Thank goodness for that running back and forth though. It kept my blood glucose levels from rising above the mid teens. The experience of organising last year's Thriveabetes made me more confident in adjusting my insulin to compensate for stress and I was fairly confident that I would have dozens of hypos.

So, in the coming weeks I will be back to my weekly blog posts and sharing lots of information from the diabetes media that I find valuable on my facebook and twitter pages. And it feels so good to be back.

I'm Missing in Action...again

Many of you will know already that I'm up to my armpits involved with a type 1 diabetes conference called Thriveabetes and so for the next couple of weeks that's where you can find me. But for the benefit of my new readers and followers - let me catch you up:-) Thriveabetes came about because myself and a few others recognised a need for more that just a diabetes conference. We wanted a space where we could learn something new but also to spend a day with others just like us. We place extremely high value on learning from our diabetes peers and their support.

Our mission is to entice knowledgeable speakers who really know how to connect with their audience and who get it! A lot of our speakers live the life of a person with diabetes too. And to allow for people to hang out and form friendships as much as possible.

Thriveabetes will take place on Saturday, October 1st 2016 in The Killashee House Hotel, Naas, Co. Kildare. The event has sold out but we do have a waitlist up and running through Eventbrite for any cancellations that may arise.

Click HERE if you would like to know more about Thriveabetes.

Diabetes Discrimination in the Workplace

This is part 2 of my Diabetes Discrimination post. The first part focused on Diabetes Discrimination in your career choices. This piece was prompted by a presentation on “Diabetes Discrimination in the Workplace” at the Diabetes Hands Foundation MasterLab 2016 conference. Unfortunately the recording is no longer available.

I’ve never had a problem in any job that I’ve had but I also did not talk openly about my diabetes. I should probably add that I haven’t worked outside of the house in over 10 years (YIKES!!!) I felt that it was too difficult to communicate to people about an illness that I knew very little about and I got tired very quickly of the only response being “How awful, you can’t eat any sweets”. This was pre type 2 diabetes stigma. But I’ve also always had desk jobs where I could store my handbag and meter in my desk.

I do remember the one time that I disclosed my diabetes in a job interview and got the job. Soon after I started, my boss asked what should they do if I collapsed on the floor. This was in the days where I downplayed my diabetes becauses I didn’t want it to make me different. So I said, “Nobody panic! Call an ambulance, I wouldn’t be going anywhere”.

Other occasions, I didn’t disclose my diabetes until after I had received a job offer or started in my job. It still didn’t affect they way I was treated in the workplace. But I know that my experience isn’t everyone's.

I do find that these days, working/volunteering from home, that I tend to ignore things like pumps alarm reminders to check blood glucose levels because I just want to “finish this one thing”. I have to force myself to stop what I’m doing to do a check.

It’s up to you when to tell your employer that you have diabetes, or if you tell them at all. Unless you are asked (see below). But it is a good idea to tell them or your co-workers at some point, if only to know that someone has your back should the unlikely happen.

This information comes from Diabetes Ireland and I recommend that you keep a copy of it at your place of work to remind yourself that you do have rights.

Entitlements around Employment/ Education.

“You are legally required, if asked, to inform any potential employer of any long term condition during the recruitment process. Under the Employment Equality Act, the company cannot use your medical condition to discriminate against you in terms of successfully getting the job. Diabetes Ireland does not consider diabetes a disability nor do we consider it to have a substantial effect on any person’s ability to carry out normal day to day activities.

As a person with diabetes, you have certain rights. They are;

• - The right to eat food (either on the job, or to have a reasonable number of breaks to do so) is crucial for people with diabetes.

• - People with diabetes also have the right to monitor their blood glucose, and administer insulin or medication accordingly. If you work in a public environment, you might ask to have a relatively private space in which to give yourself injections.

• - People with diabetes also need freely available bathroom breaks.

• - As a person with diabetes, you might also request to work regular hours, rather than shift work, if your doctor feels that your glucose control will be made more difficult with changing patterns. However, this is at the discretion of the employer.

• - A person with diabetes is entitled to time off to attend hospital appointments. However, payment for this time is at the discretion of the employer. Medical information is confidential, and so you do not need to share your medical past with your employer. You can share what you want, but you should also share what will be needed.

The first step is to educate your employer. Explain what the effects of diabetes are and how diabetes can be managed. A person who manages their diabetes will not hold back any team. If anything, we suggest that a person with well-managed diabetes will be a benefit to their workplace, because they have learned organizational skills, self-discipline, and they lead a generally healthier lifestyle which results in fewer sick days.”

There is also more information on Diabetes UK’s website, as well as an Advocacy Pack on what you can do if you feel you are being discriminated at work because of your diabetes.