Another Thank You from Insulin for Life

The Thriveabetes 2018 Insulin for Life collection of unwanted diabetes supplies to send to for the UK’s InDependent Diabetes Trust Insulin for Life programme, where they send them to countries where these supplies are extremely difficult to access was a huge success. Sarah MacCann has put together another thank you from Insulin for Life. Sarah is mum to Evan who has type 1 diabetes since the age of 5. She volunteered in 2016 to collect diabetes supplies

The 2016 collection was so successful that even though she couldn’t attend Thriveabetes 2018 herself she put her husband Kieran and Evan in charge.

Here are some words of thanks and some photos on how the 2018 collection went from Sarah. I also want to extend a huge thank you to Sarah and her family for volunteering to do this on two occasions now and for reminding us that while we don't have all we want in our diabetes care we have unlimited access to insulin and test strips.

Another Thank You from Insulin for Life

by Sarah MacCann

We asked delegates coming to this year’s Thriveabetes, way back in February to bring along their spare insulin and diabetes supplies to donate to Insulin for Life. And once again, we had fantastic response!

All in all, seven full boxes – that’s two more than last year - full of spare insulin, pens, syringes, test strips, blood glucose monitors and lancets were packaged up and sent off to the InDependent Diabetes Trust, who are Insulin for Life's local partner in the UK. All the donated supplies are then sent on to clinics in Tanzania where many families are unable to afford the insulin and other basic supplies they need to support their children with Type 1.

By donating your spares, perfectly good diabetes supplies are saved from landfill and instead used to save lives and enable people living with Type 1 diabetes in the developing world to thrive in their own communities.

You can send your unwanted supplies directly to the IDDT all year round, at: Insulin for Life InDependent Diabetes Trust PO Box 294 Northampton NN1 4XS U.K.

Note - If you are using a courier service please call , could call InDependent Diabetes Trust on 0044 1604 622837 for further details.

Diabetes Supplies accepted:

• Unopened, in-date insulin with at least 3 months until expiry date
• Unused insulin pens
• Unopened packs of syringes & pen needles
• Unused lancets and unopened lancing devices
• Unopened glucose test strips
• Unused blood glucose monitors

Make sure everything you send is unused and in-date, ideally in its original packaging. And don't forget to say that you heard about them at Thriveabetes!

More information on how to help

We still have a long way to go to achieve equality of access to insulin and diabetes supplies across the developing world. The following organisations are all working to make insulin and diabetes supplies available to all those in need of them worldwide:

http://t1international.com/

www.insulinforlife.org

www.iddt.org/here-to-help/helping-developing-countries

https://lifeforachild.org/

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.

[huge_it_gallery id="25"]

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.