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