Paying for CGM

Continuous Glucose Monitoring is priceless. In the five years that I’ve been using the technology, it has allowed me to live life differently than had I not had it.

I began using the original (“garage door opener”) Guardian RT in the summer of 2006, when real time monitoring was still in its early infancy. That device had no graphs, just a stream of numbers that had to be scrolled through and then mentally interpreted in to trend patterns. The transmitter was clunky, with a thick grey wire connecting it to the sensor. The receiver was huge. And ugly! But it was an absolute God-send. I started using it shortly after my diagnosis with adrenal insufficiency. It was a summer that, thanks to my body’s lack of cortisol, was plagued by severe lows. I used more Glucagon in that summer than I had in the preceding 23 years of diabetes put together, but that still hadn’t been enough to prevent several unconscious hospital admissions. The repeated lows had also left me with no awareness at all of low blood sugars when they occurred, ensuring that the risk of repeat episodes of unconsciousness remained even after my cortisol leves had been artificially restored.

The Guardian gave me back confidence in my diabetes control, helped me reign the lows in and restore some warning symptoms. I quickly learned to see the difference between 5 mmol/l going up and 5 mmol/l going down, something that finger stick results can’t differentiate between. Knowing where I was coming from and going to, as well as where I was at, was a revelation.

From that moment on, I was hooked. I switched to the Paradigm Real Time – integrated insulin pump and CGM – later that year and haven’’t really looked back. Continuous monitoring is as much a part of my daily diabetes management now as regular finger stick testing. And in so many ways it’s just as important, because without CGM the stability of my control goes out the window and my A1c climbs. To spell it out in a more black and white way, with the CGM I’ve had no more hospital admissions due to lows. I’ve kept my A1c in a healthy range despite a stressful job that doesn’t always leave much time for diabetes management. I feel more confident about my ability to mange my blood sugars with CGM than without, because the result show how much better I do.  I can live without this technology, but I don’t want to.

The biggest disadvantages to CGM? There are a few, that relate mainly to the irritations of being connected to another device and issues with skin irritation and accuracy. But the biggest single, universal, drawback is the cost. This technology os expensive. Sensors run at £50 plus each. They are licenced for varying periods, although it’s possible, desirable even, to get them to run for longer, the costs still add up ad this is without factoring in the hardware. I was fortunate enough to buy my first system cheaply second-hand, from a lady who was upgrading to the Paradigm Real Time. I then had a series of loaned Paradigm pumps of my own, so I was only meeting the sensor cost out of pocket, and managing to source these from the US where the costs were lower. Eventually, the NHS agreed that I had a case for using this technology and I received a brand new Paradigm real Time 722 pump free of charge. The sensors were also provided, but on a box-by-box basis.

I didn’t fully appreciate that to begin with, but by providing them on an as-and-when basis, they left the way clear to stop providing them. There was no formal agreement for ongoing funding. And at the end of last year, the supply of sensors dried up and I was back to forking out for them out of pocket.

That co-incided with a couple of things happening. The most significant was that I was hitting a lot of issues with the Medtronic system I had been using.

For a long time I felt like a small voice, in a very tiny minority, defending Medtronic CGM against the competition. Of course there were ups and downs but I felt frustrated to read so many reports of how much better the Dexcom was. Frustrated in part because Dexcom wasn’t even available in the UK at that time, so it wasn’t as though I had a choice. I felt that a lot of the information I was reading was anecdotal – that a few bad reports of Medtronic and a few good reports of Dexcom were simply multiplying without providing a true picture. I felt frustrated that so many people seemed to make assumptions without trying the technology for themselves – forgetting that, just as your diabetes may vary, so may your CGM experience. I’ve always maintained that different devices work differently for different people, but it felt like a personal sleight when people were rude about a device that had changed so much for me and that I had come to view as a dependable friend.

It was good, too: At that stage I was regularly getting 2 weeks or more per sensor, was seeing excellent correlation between CGM and meter readings, a 99% hypo detection rate and had never had a truly “bad sensor”. Calibration errors were also few and far between. The technology simply worked for me, with very little frustration or inconvenience, bar some itching from the adhesive. (Anyone else remember the hideous adhesive patches that accompanied the first and second gen transmitters?)

But then calibration errors began to crop up frequently. It seemed as though if the number you calibrated with wasn’t exactly the same as the number the CGM was already reading, you’d have no chance of avoiding at least one error. And when Medtronic changed their sensors, it led to the first truly “Bad Sensors” – ones that just never got going. Despite the fact that they were now approved for 6 days rather than 3, I very rarely got more than 5 days out of a sensor, with the first and last being a little off the game anyway.

I would probably have continued to tolerate Medtronic if the NHS had continued to pay. That may sound wrong, but I don’t feel it is. It’s not that the Medtronic system had become completely worthless –  I was still getting masses of useful information from it. It had just become irritating and frustrating and that was magnified by the fact that I was spending my own good money to get that frustration!

And at the same time, I was desperately working to get and keep my A1c at a good level to conceive a baby. The accuracy of the technology had never been more important. So I chose to check out the competition, and made the leap to the DexCom 7+ System.
At the same time, we also moved house. This is significant because funding for technology such as pumps and CGM by the NHS is handled at a local level. Local Primary Care Trusts handle the budget for these things for people living within their area. Moving to a new area meant that suddenly I was asking a different group of people to fund the technology.

It’s still been an incredibly slow process, but tomorrow I finally get to attend the panel making the decision on funding and to present my case to them in person for an ongoing agreement to pay for this technology. The timing could not be more important. I’m half way through my pregnancy and the importance of good control has never been greater. I’m also using an out of warranty Animas insulin pump and excitingly the Animas Vibe, which integrates both Animas Pump and DexCom CGM, received European Licensing approval last month and is due to be available to customers here in the UK by the middle to end of this month. Receiving funding approval now could pave the way for me switching to the Vibe with no out of pocket expenses at all.

It’s a big day. The technology is priceless, but it still needs to be paid for.

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