Thursday, 21 November 2013

Would I and Should I?

Hi Again.

I write this post as an extract from an email conversation I've been having with Mike from Every Day Ups and Downs. I've mentioned him frequently and mainly because his blog pieces are so well written and entertaining. We also share similar thought processes and journeys in our battle to get control of the D. Soon after I started blogging I wrote a piece on whether pumping was what I wanted to do. Mike was having similar thoughts and after some mutual hand-holding we jumped in at similar times. Two years on and pumping is starting to become 'normal' so my head has tilted towards CGM. 

I've talked occasionally about CGM before but what is it? Continuous Glucose Monitoring involves attaching a device to the body that has a sensor under the skin that measures glucose in the interstitial fluid every five minutes. These readings allows a line graph to be produced that shows the wearers BG readings over time. There's an example here of when I used it and how blooming useful it was. It also has the ability to spot sharp changes in BG to highlight a possible hypo or hyper event. So it's potentially life-saving and can also be used to reduce peaks and troughs through ongoing analysis and therefore improve control and reduce future complications. Therefore it has both short and long-term benefits. The big practical negative is having another piece of kit attached 24/7 that, unlike the pump, can't really be disconnected apart from when changed or not used.

OK, so we have the background information and now it comes down to some key questions I went through with Mike.....

1 - Do I want a CGM? 

If it's a simple binary choice on a questionnaire then the answer would be a yes. The ability to be able to see trends and also spot potential dangers is a massive plus. Stick tests can give you that but you need to be dedicated and also willing to sacrifice the time and sleep to get a good 24 hour read. I've occasionally been able to use a Medtronic Enlite sensor from my local clinic for 6 days prior to my hospital appointment. Frequency of this has dropped though and it's well over a year since I last had one to try. The arguments 'for' are well known but the reasoning against is mainly a funding issue. The consequential improvement in control and reduction in dips and spikes will lower A1c etc. I strongly believe this WILL then lead to a percentage reduction in likelihood of me getting complications in years to come and the severity of them. These are my thoughts. I know others think otherwise and that's fine too but as it's my body, it's my brain making the decisions - and by chance sometimes it'll be the right choice (for me). I'm not naive enough to think I'm going to have survive my whole life (minus 3 years) with diabetes and not be affected by my control at some point. But the argument that I will save the NHS £x,000 in care in ten or twenty years time won't hold much weight with this year's bean counters trying to limit spending as much as possible. And I understand why that is so but it still stinks. There's also another part to the CGM; it's another external piece of kit permanently attached. Part of my pump resistance was having something on my body at all times. This would be bigger and also not removable when attached. Do I and the people around me want another larger item attached 24/7 that can't be removed as easily as pump tubing? This is a big factor too but not the focus today as it may be irrelevant anyway.

2 - Which CGM would I want? 

When I've had the Enlite I've had no concerns at all but I know others have over accuracy when used for extended periods. All anecdotal and I'd prefer to prove this myself but all knowledge is power. The big advantage that the Enlite has is that the receiver is already inside my pump. This means it doesn't need a separate receiver and can combine data with the pump to display all information on a single graph or chart. The sensor is also pretty small - large coin size. Tied with this is the auto-suspend function although I've never (that I'm aware) had a situation in the night-time when that would have been useful to me - an alarm for rising would have been useful on the handful of occasions where I've become disconnected though. My other choice would be the Dexcom G4. I know other systems are available but for me this would be my preferred other option. The big advantage over the Enlite is that the sensors can last for much longer with examples in the DOC getting more than 30 days out of one sensor. If paying for it myself then this is a huge difference. The Enlite's can sometimes stretch another couple of days over the 6 recommended but this doesn't come close. Because of all of the above the answer is if self-funding; probably the Dexcom based on average daily cost but if NHS funded then the Medtronic Enlite would be the choice. I think.

3 - Will (and should) I get CCG funding? 

In short no (and not sure). Discussions with the hospital and CCG have shown that increased CGM funding is unlikely unless there's a strong clinical need. Improving control and getting my HbA1c down from 7.3 to low 6's is not classed as a priority. It is for me, massively, but not for them. Pump therapy funding is hard enough to get locally as it stands, so achieving permanent funding for a CGM (for an adult) is not going to happen. Especially when paired with my local health authority's significant debt and cost saving exercises. Another attendee of the pump users group has secured one week a month that's paired with monthly consultant appointments. That's great for her but for me to try and go for that just isn't possible unfortunately. Each sensor fitting and appointment would take me the equivalent of half a day to commit to and I'm struggling to fit in enough time for my usual D care as it is, so an extra day a month can't be done. Feel free to say that I should stop whining about CGM then. If I can't commit 12 days a year to it then how could I expect my CCG to fund it? There's also the NICE issue. I found out last week that the number of people in England who get funding for CGM is around three figures. Because it's not NICE approved every case for it has to be exceptional and not previously seen. By default this means that the more people who get them, the less exceptional they become and so it's harder to get the next one approved. Without NICE backing it will never be seen as a recommended method of monitoring and thus won't arrive on the CCG shopping list as an option. And because of cost I doubt NICE will do that anyway. If certain cancer drugs struggle to get funding then why should I get something that is a glorified blood testing machine? As a person living in an area with obvious bigger funding concerns then how do I feel morally about taking £4k per year out of the finite pot of money available? Not sure is the answer. Yes, I'll be saving money in twenty years with an increased likelihood of fully functioning limbs, kidney and eyes but my day job I work in a financial role and understand that budgets are dealt with when they are there not where they might be in decades time. 
So in summary I don't know if I should get funding but I would like it if available. Maybe the answer is partial funding of say one or two sensors a month but where I can control when I use them and also do the insertion myself. Still highly unlikely though.
Medtronic currently have a UK promotion where as a first time user if I buy five Enlite sensors for £275 they'll chuck in the Minilink kit worth £495 for 'free'. And then once I've bought another two boxes of sensors I'll get another box free. So all in £825 ($1320) for 20 sensors or £6.88 ($11) a day for the first 120 days. After that £/day costs will rise without the free sensors and with the kit replacement after 12 to 18 months but as a start it's not a bad offer. There has been some unwritten promotion by Medtronic to suggest that armed with the CGM data and proven improved control the CCG would look at this and consider funding. I think this is a little deceptive as it still doesn't fit into any funding criteria model and if you've self-funded then the CCG is most likely to just say that's fantastic, but if you want to continue it you'll need to keep paying for it.

I'll now add a comment from Mike that pretty much sums up what I said just to prove I'm not bonkers: 

"However, where it comes to CGM there therefore is absolutely no room for manoeuvre. I cannot justify *that* level of expense (which is, lets face it obscene) for the sorts of improvements I could realistically see. Yes it would be amazing. Yes I would value all that extra information (well some of the time anyway!). Yes a low glucose suspend would be a lovely safety net on some evenings after I've had a few too many and can't really juggle the maths/factors in my head confidently. But honestly? For the NHS to fund that full-time for me is unsupportable."

4 - Would I self-fund? 

Possibly. As above though I think it would only be on an intermittent basis. This helps in two ways. Firstly having an extra external body part wouldn't be permanent although the long duration of the G4 might mean that's less of a benefit. And also it spreads the cost. With the Medtronic promo both the Enlite and the Dexcom G4 cost about the same in the first year if you can get 18 days out of every G4 sensor. If you get longer then the G4 wins easily. Also the Enlite will need a new sensor every year(ish) and for the second year with Medtronic you'd need to buy that at full price (also 4th box free won't last forever) which brings the break even day for the Dexcom down to day 9. But and this is a big but, it's still a lot of money for me to pay. In my personal household budget is paying a few of thousand pounds a year going to be justifiable with minimal visible short/medium term benefit? Not sure. Maybe we can sell a child? (Kids, if reading this, I'm joking we wouldn't get a lot of for you so you're safe.) (Still joking, don't stress, you're not going anywhere!)

All that is a really long way of saying I would love a CGM but the overriding problem of cost (to me or the NHS) means that at the end of the day it's not on my horizon at the moment. And yes I know that's possibly / probably to the detriment of my long-term health but then so is sneaking that Roses chocolate from the bowl in the living room last night. Our local Medtronic saleswoman was hinting at combined sensors and sets recently. Now that would be really sexy and would blow one of my biggest negatives straight out of the water. I'm sure the cost will be prohibitive initially and again I doubt my skint CCG would fund that either - would it need a new pump too? Not sure. Too many questions!!!!!!!

Just like being attached to a pump isn't for everyone I know others are repelled at the thought of CGM. I believe that's fantastic and proves that firstly 'your diabetes may vary' and also what a wide range of opinion the DOC has. No-one is wrong, their opinion is right for them. 

As always I've seemed to asked more questions than I've answered and I'm not sure I've even fully resolved the question in the title of this post.

As always thanks for reading and please comment below.