Freestyle Libre Petition Presented to Government

What do you do when a petition calling on the HSE to remove the age restriction on the Freestyle Libre reimbursement scheme has 19,000 signatures? This is not a question that you ask yourself everyday. But it was a question that Davina Lyon, Liz Murphy and myself asked each other a couple of weeks ago. What was the best way to use this petition to achieve our goal of making the Freestyle Libre reimbursement scheme available to all ages.

Then a couple of very supportive TDs came onboard and agreed to help make a public display of accepting it and voila we have a day out to Dublin and invite some friends :-D

And that’s what we did! 

We also got some advice and support from Kieran O’Leary and Anna Clarke from Diabetes Ireland and an event took shape.

People came from all corners including Sligo, Clare, Kerry, Louth, Offaly, Laois, Kildare and Dublin. There were over 30 of us all sharing our stories with our respective public representatives who matched our numbers one to one.

We drove our point home that it wasn't just about the finger prick but the additional information that it provides about glucose levels.

So what’s next?

On the afternoon of Wednesday, 18th April, more information in the form of answers to Parliamentary Questions asked by our TDs came from the HSE:

“In line with the recommendations of the Health Technology Assessment Group, the FreeStyle Libre product will be made available on an individualised basis to children and young adults in the initial phase during which monitoring of the anticipated cost efficiencies in strip usage will be conducted. After twelve months, the situation will be reviewed to determine next steps.”

This leads to more questions but maybe we are a bit closer to accessing the Libre?

More questions

It seems that every piece of information we receive prompts more questions.

• Why it's necessary to monitor cost efficiencies in test stip usage for an entire 12 months when conceivably 3-6 months would gather sufficient information?
• Will this monitoring record if the reimbursement candidate is an existing user of the Freestyle Libre and take into account the fact that they have already reduced their strip usage?
• How long will the review take to come to a decision on the situation and will that decision be announced promptly?

Waiting Patiently yet again…

And so once again adults with diabetes are left patiently waiting for improvements in diabetes management….

But watch this space!!! It's very impressive what can happen when you bring the diabetes community together.

DISCLAIMER

Diabetes Ireland organized a press photographer, crafted the press release for the media and printed extra copies of the press release to hand out to TDs for background information.

Thriveabetes covered the cost of printing the petition.

Cathal Fleming of Dominic Fleming Electrical Accessories Ltd, Damastown Industrial Estate, Mullhuddart , Dublin 15 donated the Mobile speaker.

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Photo credit David Coleman Photographer

Continuous Glucose Monitors CGM Funding Options

I believed for a long time that they only way I could get a Continuous Glucose Monitor or CGM was through my diabetes team in my clinic. However, I have since discovered that there is more than one option to get your hands on one of these and more than one funding option. A continuous glucose monitoring system monitors glucose levels 24 hours per day. It takes a glucose value every 5 minutes and gives the wearer an average blood glucose level and where it’s heading (trend arrow) for that hour. You can read more about what this device does here.

What are your options for getting a CGM?

If you are interested in getting a cgm you. Have three options:

100% SELF FUND

Not many people are aware of this but anyone can get a cgm! You don’t need a prescription or permission from your diabetes team. That is if you have the money to pay for it! And they are flippin’ expensive!

All of the companies offer a trial before purchase. It’s a lot of money to invest and you should be sure before you have to commit financially.

It’s as simple as going to one of the three websites above and sending an email to them, or making a phone call to order or order online directly as with the Libre.

Here is Dexcom’s latest pricing information. Here is the libre’s. And Medtronic’s will be available when they relaunch the Guardian in the spring.

UPDATED 21/4/2018

If you do self fund your device you can claim a VAT refund AND an Income Tax Refund for your CGM.

CLAIMING A VAT REFUND

Claim your VAT refund of 23% back from the cost of your Flash/Continuous Glucose Monitor through the "reclaim VAT on aids and appliances for disabled persons" scheme, as diabetes is legally recognised as a disability in order to be included on the Long Term Illness scheme.

This is the link to find out how to claim.

AND

CLAIMING AN INCOME TAX REFUND

You can claim relief on the cost of health expenses. These can be your own health expenses, those of a family member or any individual’s, as long as you paid for them.

You generally receive tax relief for health expenses at your standard rate of tax (20%). Find out more here.

Note - The Med 1 is no longer available. Health expenses are claimed through your tax return form.

COMBINED FUNDING

Combined funding is a combination of Part self funded and part HSE funded. This option requires you to work with your team to come up with a plan that works for everyone.

It can involve a suggestion from you to your team that you are willing to fund the transmitter and receiver if your team can submit an application to have the sensors funded through the Long Term Illness Scheme (LTI).

HSE FUNDED

This is where the HSE cover the cost of the CGM 100%. One such Grounds for this funding include hypo unawareness. However, be aware that if you are deemed to be hypo unaware that it has consequences for things like life insurance or mortgage.

Others grounds for HSE funding can be found under the UK’s NICE guidelines.

There are three CGM devices available at the moment:

Dexcom G4 or the G5

Dexcom have a good reputation in this field and have been leading in accuracy. As far as I’m aware Dexcom can be integrated with only one insulin pump: the Animas Vibe meaning that you don’t need a receiver. It’s one less thing to carry around.

The G4 has been around for awhile but Dexcom are now focusing on their G5® Mobile CGM System where the Transmitter sends data wirelessly to your compatible smart device or your receiver where you can “View your glucose trends in vivid colors to know when it’s high, low or within range.”

Medtronic Guardian Connect

The Guardian Connect was launched in Ireland April 2017. It’s not integrated with any insulin pump just yet but I imagine that will happen in time. This CGM also transmits information wirelessly to the Guardian Connect app on your iPhone or iPod Touch only.

However, there is currently a global shortage of Medtronic Enlite sensors. The company has made the decision to maintain existing customer supply and has placed a freeze on any new CGMs being sold until next spring in Ireland. 

Flash glucose monitoring- Freestyle Libre

The Freestyle Libre is, Technically, not a cgm but a flash GM. The difference being that the wearer has to scan the sensor to get the glucose value and trend information. Here is a review that co-founder, Rebecca Flanagan wrote on behalf of her daughter who continues to use it. 

CGM's IN THE PIPELINE

Senseonics’ Eversense: a 180-Day CGM which received it's CE mark approval in Europe in September and is being trialed in many European countries at the moment. Also in clinical trials is the Nemaura SugarBEAT patch. The first-generation sugarBEAT® received CE approval in early 2016.

The Freestyle Libre; why we need it

I write quite a bit on BloodSugarTrampoline.com about how fortunate I am to have a Continuous Glucose Monitoring System CGM courtesy of our health service. It was something I had to fight for and I will never give it up or switch to a Freestyle Libre. So why am I, a die hard CGM user, pushing for more people to be included in the Freestyle Libre reimbursement scheme here in Ireland?  

We should all be included in the Freestyle Libre reimbursement because:

THE INFORMATION ON GLUCOSE LEVELS

Firstly, the information that both a CGM and the Libre provide about your blood glucose levels are similar, even though they are different types of technology. I wrote more about the Freestyle Libre here when it was launched in Ireland in November 2016. https://bloodsugartrampoline.com/blog/index.php/2016/11/01/funding-the-freestyle-libre

Having more information beyond a finger prick means you are better informed to make insulin dosing decisions. You can take action to avoid hypos and hypers before they happen. Within the first six months, that I used my CGM I brought my HbA1c down by one whole percent!!! I hadn’t been able to budge that number for years.

For decades, we have been using finger prick devices which don’t provide enough information about our glucose levels. The Freestyle Libre does provide this information and empowers us in our life with diabetes more and be less reliant on our diabetes health care team.

The Freestyle Libre also give our consultants more information to help us manage better.

I feel that having this information is priceless! Worth a lot more than €62.60 per year.

REASONABLE COST TO THE HEALTH SERVICE

CGMs are way more expensive, therefore more difficult to get funding for though the health service. And so if we can’t give everyone CGM’s why not give everyone, who want it, a Libre at a much more reasonable cost. The HSE estimates that it would only cost an additional €62.60 per person, per year for the Libre when you account for the reduction in test strips.

Device name	Libre	Dexcom G5	Medtronic Guardian Connect (Pay as you go Plan)
Start up cost	€169.90	€397.72	€660.1
Sensor cost	€59.90	€79.95	€66.125
Sensor cost per month	€119.80	€319.80	€316.25
Annual cost of replacing Transmitter	N/A	1254.6
annual cost of consumables	€1,437.60	€5,092.20	€3,795.00

EASY TO USE

• Minimum training, if any, required for people to insert and use. I was able to insert it using the photo instructions. Plug and go!
• It doesn't hurt like a finger prick check can sometimes hurt. So you’re more like to use it more. The once every 14 days doesn’t even hurt.
• It takes less time to get a glucose result, about 10-30 seconds versus 2 minutes using a traditional finger check monitor.
• It doesn’t cost more if you scan more often. And many studies show that increased glucose checks lead to better glucose management.
• It’s so discreet. No-one can tell that you are checking your glucose.
• It gives more information to aid in insulin dose calculations.

• AND, AND, you don’t need access to hand washing facilities like you would to get an accurate finger prick check.

“Continuous glucose monitors, or CGMs, have been around for over a decade, but poor quality and high costs have been barriers to use, says Irl Hirsch, who holds the Diabetes Treatment and Teaching Chair at the University of Washington School of Medicine.

But improvements on both fronts lead him to believe that CGMs will soon become the standard of care. At his own clinic, 60 percent of patients use one.”

It is a huge step forward for people with diabetes who were using finger prick devices only.  I think that Dr Irl Hirsch is very insightful when he suggests that CGM’s, including the Libre will be the standard of care soon. I don’t think Ireland should be left behind again.

Here are some of my blog posts from Blood Sugar Trampoline on my experience with my CGM.

• How I got a CGM
• Things I've Learned about my Diabetes with a CGM
• To Know or Not to Know - A CGM Story
• The CGM Conversation is Changing

All people with diabetes need to be included in the Freestyle Libre reimbursement scheme. We should get to choose if we want this device or not.

Please join me outside Leinster House, Dublin 2 on Wednesday 18th April to present the Libre Petition to members of the Dáil.