CGM Approval: The Funding Finish Line

This is a landmark diabetes year for me. My quarter century: Twenty five years of living with the highs and lows, quite literally that type one diabetes brings.

Things have changed a lot in that time. From the type of insulins I use through the regime in which they are administered to the way they are administered. From beginnings of animal insulins in clunky syringes, I've now been using an insulin pump for more than six years.

And the changes in monitoring of blood glucose levels have made what we used to do back then almost unrecognisable. Back then we couldn't have conceived of monitoring systems designed to be worn continuously. This past Monday, though, marked my two year anniversary of using just such a device.

I'm still as committed to, and impressed and amazed by, CGM as I was back on that balmy July evening when, fresh out of hospital with a diagnosis of Addison's Disease, I got hooked up for the first time. I remember the feeling of blinkers being lifted away as I could see for the first time the direction I was heading in.

I'm not sure if I can claim that CGM has improved my A1c and I'm certainly not convinced that I can claim it's saved my life, but it has made an enormous difference. A difference in the number and severity of my low blood sugars. A difference in my confidence to work in the occupation that I do, without putting myself or my patients at risk. It's made a huge day-by-day difference to the quality of the life that I'm living. That is important, because if life must be simplified and stripped bare in order for me to live it healthily, then I can't really see the point. I want a full life and a healthy one.

It didn't take me long to decide that CGM was a tool that I wanted to be a permanent part of my diabetes management system. The problem? This technology is expensive.  I've been very lucky to experience incredible generosity and have had the necessary hardware, a  Medtronic 522 pump, loaned to me (not directly from Medtronic, I must add). But that pump is not my own, and sooner or later will need to be returned. I've also had to pay out of pocket for the sensors from day one. Here in the UK, the original sensor price was a whopping £50 a pop (roughly US$100 at the time). Although there have been price drops since, sensors still remain a significant cost. So I turned my attention to getting it funded by the National Health Service (NHS).

Contrary to what some may think, the NHS is not a free service. Like any other nationalised service, we contribute to the cost through taxation. Essentially, the more tax you pay, the more you contribute and I don't mind admitting that I'm a higher rate tax payer. There are several people who've suggested to me that that fact alone means I must be able to afford to pay for my own CGM. Well, yes, if I really have to - and I have been doing. But it means giving up something else - maybe a hobby, or a holiday, that if it weren't for the chronic health condition I have, I would be able to do. Aside from that,  there is a principle at stake. I've already contributed significantly to the NHS. I work for the NHS, for goodness sake. And finally, if I can't keep my low blood sugars to a minimum and keep myself in reasonable control, I won't be a higher rate tax payer, or working for the NHS in a high-demand field, for very long. I'll be sitting at home, drawing benefits from the state and contributing nothing.

I always knew that I'd have a fight on my hands. I got my original insulin pump prior to centralised guidance on when the NHS should, or should not, pay for an insulin pump, issued by the National Institute of Clinical Excellence, or NICE. Insulin pump funding used to be decided on a case by case basis, demanding that each patient prove they had good reason to benefit. So I tackled CGM the same way. I showed my diabetes team data comparing hypos requiring assistance, ambulance rides and hospital admissions whilst on and off sensors. I showed them how, in my hypo unaware state, CGM caught the majority of lows sooner, made them less severe and more quickly reversed. I talked repeatedly about the difference it made to my life. How it meant I could go to work, and do the job that I love, safely.

I may as well have been talking to a wall. Sure, people seemed impressed with the figures I was giving, but this was "new technology", "unappraised technology", "of no clinical benefit."

What? Had they really actually been looking at my data?

My frustrations mounted with each unsuccessful attempt to get funded. I became unwilling to have periods off the sensors in order to keep showing the difference that it made, and I stopped taking the numbers along to hospital visits. I would end up in tears as new doctors I'd ever met before said things like "Well you know, diabetes is my job, so if you just brought along three months of records, I bet I could fix it. I do it every day. You don't need CGM."

They may meet people with diabetes every day, but they don't live it 24/7. I flared with internal anger at the arrogance that he could change everything in 5 minutes when I'd been failing to change it after months of effort.

Finally, three weeks ago, I got the opportunity to see the top professor at the university hospital where I'm a patient. And she did something none of the others have done. She listened. Really, really listened.

Fresh from the ADA Scientific Sessions, she told me the problem - current clinical studies aren't showing a measurable benefit from CGM.

"But", she said, "that's almost certainly down to patient selection." Her attitude was: "Show me what it can do for you."

So I did.

I showed her graphs of my blood glucose on sensor and off. How off sensor the numbers varied much more wildly, there were more lows, lower lows and lows that lasted longer. I showed pie charts that detailed the umber of readings that were high, low or in range comparing a week on sensor, and a week off. We talked about my hypoglycaemia unawareness and the attempts I'd made to improve it. We went through the number of times I'd needed glucagon (several) while off sensor vs on (attributable to steroid crisis). We talked about the lows that I needed assistance to treat. We talked about the three times paramedics have been called to me in the last year and how each time I wasn't wearing a sensor that particular week. We talked about the effect on my work and how I must run myself higher which doesn't fully alleviate the stress of the potential of lows, but increases the stress about the damage I'm doing to my body. I made it plain that  knew all about the inconvenience of wearing the sensor, the problems with accuracy, how it doesn't make diabetes vanish.

And then she said the magic words: "You've more than convinced me."

So finally, after nearly two years of trying, we have a concrete plan. I've spent the last couple of weeks collecting more data on my lows without a sensor on. I've filled out a whole bunch of questionnaires to quantitatively assess the impact of lows on my life and assess my hypoglycaemia unawareness. Next week, I'll return to the hospital and I'll begin 3 months of fully funded sensor use. At the end of the three months, we'll compare the data looking for an improvement. If the improvement is there, I should be in line to get the funding permanently.

I know there will be an improvement, because I've already seen it for myself.

Whilst I'm not counting my chickens just yet, I finally feel like I'm on the home stretch.

Comments

[Johnboy]

Way to build the case, Caro. With hypo unawareness and all the other complexities you are dealing with, YOU should be the perfect candidate if anyone is. You are an inspiration. Thank you!

[Colleen]

I'm so happy you found someone who actually listened to you - good luck, my fingers are crossed!

[Cara]

Good luck! We all need this technology!

[Alw]

Hi Caro! I'd love to have a CGMS but I think it won't be really easy! I hope you'll get yours, it's great what you've done!Ale

[Bob Hawkinson]

I have been using a Dexcom for about 2 years now and agree with you whole heartedly.
It is a technology that will become commonplace...I am convinced.
Keep going, Peace Bob

[liz]

Hi Caro hope everything works well for you I have had diabetes type 1 since i was 16 that was 38 years ago.I have always looked after myself.I attend the hospital twice a year and have seen loads of different doctors who havnt a clue about diabetes (i dont know who teaches them).I must be really lucky cos i have no complications (touch wood!!!)i have hypos everyday but its my life now anyway.People who are not diabetic do not realise what life with diabetes is like.Even my own family dont have a clue.But i am never miserable (only to myself).I have had 4 children .Four sections in five years which i was told it would be hard for me to have any!!!!Still had loads of hypos during pregnacies.Did have hard times having to be in hospital for months on end loads of blood tests etc etc!!!!Anyway i have a laugh with my life cos you only get one life so i am now enjoying my bottle of wine (by the way tested my blood and it is ok)so i dont really care (well i do really) but you have to live every day anyway and enjoy it as much as you can.I still go out to pubs clubs have meals out go to work enjoy life.Then i sometimes think what would it be like to be non diabetic for just one day!!!Get out of bed when you like eat when you like drink when you like not have to inject ot take a blood test!!!!maybe when i am in heaven!!!!!

[Ruth]

I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.

Ruth

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