Letter to my MP – Advocating for CGM funding

My name is ……. I live in ……… My son was diagnosed with Type 1 diabetes almost two years ago. He spent the week of his 13th birthday in hospital learning how to manage the reality of living with this disease.

He is an active, busy boy who plays cricket and rugby union for his school teams. In his free time he referees and plays touch football as well as playing rugby union and cricket. He rarely misses a day at school. Sometimes he battles through really high blood glucose levels to get his assessments done on time. He does quite well academically. He does not let his diabetes define him. In the background, the management that goes into keeping him at school and in sport is huge. He is, in my opinion, an invisible hero!

His Blood Glucose Levels can fluctuate from day to day for so many reasons (sport, heat, cold, the stress of exams, a growth spurt are all possible causes). We are in contact on a weekly, and sometimes daily,  basis with our incredible diabetes educator and almost every week the amount of insulin my son has to have is changed to avoid his levels going too high or too low.

We test him through the night several times a week and have, on several occasions, found that he was having a hypo (extremely low blood glucose) whilst asleep. Having access to a Continuous Glucose Monitor (CGM) at an affordable price, would allow the whole family to sleep and would mean I could walk into his room in the morning without the fear of finding my son dead. This is the reality of our existence. My son deserves better. All people with Type 1 diabetes, both young and old, deserve access to this technology at an affordable price. 

I watched the brave and amazing Donna Meads-Barlow speak on television about the horror of finding her daughter dead in her bed in the morning. Noone should have to go through this when there is a means to prevent it!

My husband and I do not earn a huge wage. We have two other children. We cannot afford the monthly cost of $480 and the set-up cost of around $1200.  We were funded for a week’s trial on a CGM last year and this trial (through our diabetes educator) allowed us to see patterns and make adjustments which enabled our child to have much better control. This, unfortunately, was short lived, as you need to wear a CGM more regularly to see the benefits.

In the next few years, he will complete his exams and will perhaps go off to university and then on to work. How can a young man in his early twenties possibly afford the cost of a CGM, the very device which would allow him to stay healthy, active and in the work force?

As a tax payer, I feel I have a right to ask for access to this potentially life saving device for my son,  and for all those, both young and old, who live with Type 1 diabetes.

He deserves the right to sleep through the night without worrying that he may go low and not wake up.

He deserves affordable access to a device which would allow him manage this disease with more confidence.

He will be a fully functioning, tax paying member of the work force and does not want to be a burden on the hospital system.

As a mum, and a tax payer, I ask that you please look into the funding of CGMs and advocate on behalf of all people with Type 1 diabetes .

Yours sincerely,

mum of type 1

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7 thoughts on “Letter to my MP – Advocating for CGM funding

  1. When you commented “posted” I thought you meant in the mail haha! I love your letter, mostly because your perspective on this is completely different to mine. Your son is a legend, and I hope he will be able to access a CGM in the near future.

    Liked by 1 person

  2. I couldn’t agree more. I couldn’t believe when the new NICE guidelines came out that the guidelines for CGMs were s0 restrictive. Not only would they enable PWT1D to live fuller, more active lives, they would also reduce the long term cost to the NHS through better control and less complications. I’m blogging about technology and funding later this month, and I’ll link to this as you set it out so well. https://racheljgood.wordpress.com

    Liked by 1 person

  3. Bravo! Our daughter made the switch to a CGM and insulin pump therapy last September and it has made a world of difference. I never knew what we were missing – the worst was knowing how low her blood sugar got during the night every night and we were sleeping right through it! She had to go without her CGM for about a week earlier this year when she lost her receiver and nobody slept because of the worry. Our insurance does not cover the pump, CGM, and all the supplies under the regular portion of insurance, but calls them durable medical goods and has a $4,000 deductible each year for them, in addition to the $4,000 deductible for the regular health insurance. We spend hundreds of dollars every month on the supplies, but, luckily, our insurance company pays everything and allows us to make payments each month to them. We have come to the realization that we will be paying a couple hundred dollars for these supplies every month until the end of time, but it is worth it. Like you, though, I wish there was some kind of funding to help ease the financial burden and I am scared to death of what is going to happen to her when we are no longer allowed to carry her on our insurance.

    Liked by 1 person

  4. I’m so pleased at the two responses from local MPs. Justine Elliot’s assistand emailed my for my phone number so they could gain further perspective. We had a really good chat and she actually listened. She did tell me that her friend had a teenage son with Type 1. That certainly does help but it felt to me, through her, that the Ms Elliot actually cared too. They are going to write a letter on our behalf to the Health Minister to petition her to look into funding for CGMs. I actually felt like a real person, who cared, was listening and this can only be a good thing.

    Like

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