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Re: [IPk] Pump & CGM Funding



Hi Paul
My wife's a T1 of 46 years, pumper for last 2.
As you'd expect I've been very involved with her diabetes throughout, I 
nearly said 'totally involved' but that would be impossible :-)
She and I are agreed that the pump (no CGM) has been a life changer and we 
would self fund if needed.

I agree with you that diabetes does need a strong presence in its corner, 
especially with NHS funding such an issue.
I read somewhere that about 5% of total NHS spend (and up to 10 per cent of 
hospital in-patient spend) is used for the care of people with diabetes.
If the UK population is c 62m some might argue that diabetics at c 4% of 
this figure  are already getting their 'fair share' of the limited cake (see 
below).
That would be a very simplistic argument but  .........

Of course Diabetes uk has no bias of 'policy focus' towards one type or the 
other.
Of the estimated 2.5 million diabetics in the UK some 90% are thought to be 
T2, so that Duk membership presumably has broadly similar proportions.
It would be understandable therefore if letters/articles etc were more T2 
orientated.
Nevertheless a quick tour through Duk's site doesn't suggest any bias.
Likewise, Balance seems to have a broad coverage.

Which I think probably supports the thrust of your argument - pumpers can't 
look to Duk as a voice dedicated to just 'our' special needs.
Although we could certainly request more pumping articles etc in Balance, 
with regular letters asking what Duk are doing to push the case for pumping.

However, I suspect that the best route right now is through a lobbying 
organisation such as INPUT -  which admittedly covers non-pumpers too.

There are obviously cost implications to  CGM, and I suspect lack of 
evidence that there are significant additional benefits for *all*pump users.
Individuals with special needs, yes, but not in general, I don't think 
anyway.
I say this partly based on my wife's pump experience, we don't think we 
could justify being on CGM by cost or likely additional medical benefits.

I would say that the priority issue currently is getting  pumping itself 
accepted as the standard treatment option  - available to every T1 on demand 
if they want it - where ever they live in the UK. That might need NICE to 
relax it's stated criteria, the latter perhaps currently providing (some) 
medics with a reason to limit pump availability in their fiefdom.
What we can do individually is take every opportunity (outside this list) of 
promulgating the strong message that a pump isn't an expensive 'toy' - and 
it has a very real benefit for T1s

I would assume that the pump manufacturers have a permanent lobbying 
operation to get NICE to accept CGM as the norm


Gareth Hicks

-----Original Message----- 
From: Paul Coker
Sent: Sunday, June 12, 2011 10:29 AM
To: email @ redacted
Subject: [IPk] Pump & CGM Funding

Guys



Is there a better way to gain access to funding for diabetes?



I have been diabetic for 34 years and I am more than a little tired of
having to fight for funding for every single improvement in treatment.  I do
not wish to be negative here but as people with type 1 diabetes we get a
poor deal!  I can remember fighting for funding for disposable needles,
something we were only given after the government of the day were
embarrassed by diabetics publicly because we were paying for our own
disposable syringes and drug addicts were being given them to mitigate the
risk of HIV & AIDS.  Even this was not an all encompassing solution I am
sure that many of us on here remember that even after we were given funding
for syringes we were still having to pay for novopen needles until the early
1990's.



I have been lucky enough to secure funding for my pump a battle which took
me a little over 2 years and I remain grateful for the fantastic advice I
received from this forum and in particular the help of John.  I am now
embarking on my next campaign which is to get funding for CGM.  Everybody is
telling me that I don't stand a chance but I remain certain that I can get
this resolved.  The thing that really strikes me is that we are all fighting
these battles daily on an individual level, the clinical evidence
demonstrates that these standards improve the outcome for us and have a
financial benefit to the NHS in delaying and preventing secondary symptoms.
There are circa 94,000 of us in the UK with type 1 diabetes, surely we need
a single combined voice to promote our rights to these treatments, and
before anybody suggests that diabetes UK is already doing this I would agree
in part.  However, the fact remains that diabetes UK focuses on the
interests of all of its members but the majority of those are diagnosed with
type 2 diabetes and they focus understanably on this arena.



If we combine our efforts and we approach the manufacturers like Medtronic,
Roche and Animas for assistance in creating a single combined voice which
has more volume and impact than 94,000 individual voices over a disparate
time frame.  How can we create this single voice to promote access to
treatment?



Paul
.
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