There was optimistic news from the HSE on their review and consideration of the Freestyle Libre glucose monitors access for adults with type 1 diabetes recently, see the full article from the Irish Times here.

No, I’m not throwing a party yet, but I am pleased that the HSE listened when we asked them to include Diabetes Ireland’s User Survey findings in their review through our politicians. 

Between 25th June and 9th July, thirty-two (yes, 32!) written Parliamentary Questions were asked by our TDs calling on the Minister for Health to ensure that the findings from the Freestyle Libre User Survey be included as part of the HSE’s review of the reimbursement scheme.

- Thank you to all who contacted their TD’s to do this!!!

The HSE have stated that they have “12 months of data collated for review “within the coming months”, a spokeswoman said on Wednesday. This would allow for the experience of patients and “societal aspects of benefit” to be reviewed.”

i have also received a written reply from one of my TDs PQ request from Minister Harris stating that:

“The HSE has indicated that it will consider any reputable source of data in its consideration of next steps for reimbursement support of the Freestyle Libre Device. The Health Technology Assessment  process envisaged in the coming months does allow for patient experience and societal aspects of benefit to be looked at.”

 I hope this means that the HTA consider Diabetes Ireland to be reputable and that their user survey is the patient experience they are considering

And yes, I know, it’s not time to be complacent! With that in mind, I was contacted by a fellow Diabuddy who recently moved to France but grew up with type 1 diabetes in the northwest of Ireland. Marie (not her real name because she would like to remain anonymous) wrote to Minister Simon Harris to share her diabetes story and how since moving to France she has gained access to a Freestyle Libre glucose monitor through the French health care system. 

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I am in my early 30’s and should by all accounts be in the prime of my life, unfortunately I have spent 29 of those years with type 1 diabetes. I don’t look any different on the outside, however, this disease is truly a burdening invisible impediment, the weight of which may not be apparent to those who are not familiar with someone who has it.

How Type 1 Diabetes Affects Me

Anxiety

I worry about my diabetes almost  24 hours a day, I wish this was an exaggeration, any slight deviation in my daily activity can result in dangerous hypoglycemia day or night. I cannot count the amount of hours of sleep lost to waking up shaking and drenched in sweat needing to prick my fingers to check my blood sugars, get up and eat, wait and then check again 30 minutes later before attempting to fall asleep.

Running High to Avoid Lows

The reality of type 1 diabetes is stark and can seem insurmountable, it’s a disease I have struggled to manage all my life. My average blood sugars often running high above the recommended level as it became easier for me to let my sugars run high than run the risk of falling low unexpectedly and being unable to treat it

Quality of Life

It has had a negative impact on almost every facet of my life from studies with the days taken off for hospital visits, the loss of mental clarity due to blood sugar fluctuations. In my workplace, I can be penalized and even fired for taking time to check blood sugars or being unable to keep up with the physical demands of some jobs. The impact of living with type 1 diabetes has impacted my mental health with anxiety and depression and also on the affect on my family: do I burden my husband with my care in old age, is it ever going to be safe for me to become pregnant?

I have already suffered complications regarding my eyesight likely to blind me as I age as a direct result of diabetes.

Through all this people with type 1 are expected to carry on as normal and struggle through each day, despite this we don’t seek pity merely a way to make life manageable.

Access to the Libre

The light at the end of the tunnel for me came when I moved to France 18 months ago with my husband, where I was immediately given access to the Freestyle Libre. For the first time in my life, I have been able to see exactly what is happening with my blood sugars 24 hours a day with the simple swipe of my phone. It graphs my sugars and I can see each dip and rise with accuracy, I have gained amazing insight never before possible and my blood sugars are for the first time since childhood within a healthy range.

My HBA1C (blood sugar average over 3 months) has decreased from 10.4 to 6.6 and it is only due to the Libre that I have been able to achieve this.

I am so grateful that in France access to the Libre is completely covered by social healthcare. I would never be able to afford to buy it out of pocket and I imagine many people in Ireland are in the same situation.

This is also sadly the primary reason I no longer feel it ever possible to return to Ireland as a resident as it would mean losing access to this life changing technology.

HSE Review Delay has Serious Immediate Implications

According to the article the decision to approve the Abbott Libre has been postponed by 16 months, in this space of time many diabetics can have developed complications (my  own retinopathy developed suddenly within 6 months becoming very severe) which could be avoided with methods of effectively managing diabetes made accessible to all.

The Abbott Libre is a fundamental asset to all type 1 diabetics in Ireland at the moment, not just in preventing complications down the road but also in reducing the daily burden and relieving Type 1s of the pain and frustration involved in traditional blood sugar testing methods. 

I also believe the cost of providing test strips and the Libre are the same, approving the device can only be of benefit to all.

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Thank you Marie from the West for sharing how much access to this flash glucose monitor has improved your life with diabetes. For details on the progress of the #Libre4All campaign click here.