So…. it’s taken me a while to get going on this (probably something to do with the crazy workload I had for the entire second half (and most of the first half) of last year. Never mind, I’m moving ahead with it now.
A number of you regular readers of this blog have commented on the less-than-ideal situation that is us type 1s who want to use insulin pump therapy being hit in the pocket for it. I totally agree: $7000+ up front for the insulin pump, then $200 a month to pay for all the consumables (not to mention the extra dollars we spend on things like glucose tablets, hand sanitiser, sterile wipes, batteries etc etc) is TOTALLY UNCOOL.
Personally, six months into my pumping ‘career’, I can now see why on multiple daily injections (MDI) I struggled and struggled, had highs and lows, had to take more and more injections every day and still couldn’t get my HbA1c down. I wrote myself off as a bad diabetic, and wondered how anyone could possibly ‘do well at it’ without locking themselves indoors every day and behaving like a robot. The pump – while it doesn’t take away the constant hard work of having type 1 diabetes – has swept in and turned my life around…. the flexibility I can have on the pump, along with the overall improvement in my diabetes has been incredible.
Without sounding like some sort of crazy evangelist, I am now going to start gearing up for doing my bit in lobbying to get insulin pump consumables funded (at the least) and a subsidy for type 1s to buy insulin pumps with.
I don’t have a clear plan of attack yet – I want to do some good research first to make sure I’ve done my due diligence.
First up, I’ve emailed PHARMAC to find out what their official line on the situation is (I mailed them today). This is the only thing I could find on their site, and it’s from their 2000-2001 Business Plan (http://www.pharmac.govt.nz/2002/07/26/ABP2001.pdf), so it’s probably not the most relevant. They mention insulin pumps on page 67:
We have received requests by patients to fund insulin pumps. The diabetes subcommittee of PTAC has previously recognised its use in the small “brittle” patient group but so far has not recommended PHARMAC subsidise them. Currently there appear to be various ways patients access pumps, for instance hiring them from hospitals. Anecdotally we are aware that manufacturers are starting to promote pumps for wider use than just brittle diabetics. The subcommittee has considered the issue and expressed an interest in considering it further but gave it a low priority compared to other diabetes areas and asked that before it consider it further, the funding stream (HFA directly or PHARMAC) be clarified.
For those of you (like me) who’ve never heard of the term ‘brittle diabetes’, here is a definition: http://www.medterms.com/script/main/art.asp?articlekey=18392.
The other part in my fact-finding mission to date was to find out for sure if my insurance company would/not come to the party. So, I emailed Southern Cross. I have been with Southern Cross solidly since 1989, and have had diabetes since 1994, so I did not have diabetes as a pre-existing condition when I signed up. Everyone has told me to forget about health insurance paying for these things, and they were right. Click here to see a copy of the rejection letter.
So…. next steps…. a bit more research, then I’m going to see if I can get a meeting with my local MP. Will give you updates as they occur.
Posted in Funding, Insulin Pumps
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12 comments have been made on this post
Chris wrote
I see that Pharmac makes mention of HFAs – HFAs were done away with several years ago, and that shows that Pharmac is really out of date. I see that the diabetes subcommittee of PTAC is made up of professionals only. It is a pity that one or two people with diabetes (preferably Type 1) were not on the subcommittee.
Debbie wrote
I am a mother of a 13 yr old son with Type 1. We have just beg, stolen and borrowed the funds to buy our own pump and are hoping to be ‘live’ in March.
I have been considering for some months the situation with pumping and funding and wondering where to start with the lobbying.
I will be following your quest with interest and may even jump on the bandwagon with you!
Nic wrote
Hi Debbie – great to hear from you and good on you for getting your son on a pump! All the best for the start in March. It’s hard work but incredibly worth it. Re the lobbying I think we’ll need to get as many people together as we can so I’ll keep blogging about it and get you all to join in when we’ve got something cohesive (I believe there are some other people out there who are a few steps ahead of me so I’ll catch up with them when I can). Let us know how you get on with your son’s pump start!
Chris – good point. Surely it would make sense to have actual, real life diabetics on the committee?!
Aaron wrote
Hey all. Since the conversation is starting I’ll reaffirm to you all that I too am on this bandwagon as are others I know. I plan on talking to my MP soon to make my concerns heard so let’s all talk and organise ourselves into a cohesive unit. The more voices we can get the better.
A
Debbie wrote
My MP is John Key but I have no idea how easy he is to get hold of. But I am willing to write to people. Hopefully more people will get on board.
Nic wrote
Nice one…. I know Matt who reads this blog has spoken to the Attorney General recently… Matt can you summarise what happened at the meeting? Nic
Kris wrote
There is a guy in Wellington called Matt Taylor (can be contacted through his website www. breakscore.com) who is very politically active in trying to get funding at least for pump consumables. Matt has had positive feedback from Jackie Blue (National MP who is a doctor), and has recently been to see the Attorney General Chris Finlayson to discuss it – he was positive about it too because his sister has Type 1, and he agreed to write to Tony Ryall (Minister of Health) about it.
Matt contacted me last year after I wrote a ranting letter to the Listener about funding for pumps and asking why the hell David Cunliffe wouldn’t give the go-ahead for the pig cell trials. (which Cunliffe subsequently did thank goodness – although I’m sure it wasn’t me that made him do it!) So many Type 1s (and parents of Type 1s like me) got in touch with me after that letter I was really surprised. There are obviously a lot of annoyed people out there so somehow that needs to be harnessed. Annoying MPS by writing to them a lot is one way I have found useful, but there must be others!
Aaron wrote
This is all sounding great guys. I forgot to mention that Nikki Kaye is also a friend of mine so I can potentially have some impact there. New to parliament, looking to make her mark and eager as a bean. I’ll see her within the month for personal reasons anyway so will be sure to have the conversation.
I remember when my mother accosted Jim Bolger in public in the early 1990’s because diabetics had to pay for syringes and drug addicts got them for free and they changed that policy pretty damn quick. I’m taking after her!
Nic wrote
Update to the PHARMAC email: http://www.beingdiabetic.co.nz/2009/03/02/response-from-pharmac/
Lucy wrote
Hi,
I am happy to help where I can. I have a 5 month old baby and have found the pump a huge help and has lowered my Hba1c significantly. Being on one income, the financial commitment has been a struggle to say the least. I had to get a loan to get the pump. Would support any work to get some funding!
Nic wrote
Hear hear Lucy, it’s the last thing you need when you’ve gone down to one income I’m sure!
Saffy wrote
Ok a very late post on this but I’m fired up on this topic too. Explain to me why the govt will fund my Lantus at some ridiculous cost each month (i.e. about the same as pump consumables) but won’t pay for pump stuff? It almost makes me want to spend the next 10 years pregnant so that the hospital will pay for my stuff :p How can T1s EVER be as ‘high on the radar’ as T2s in Pharmac’s eyes when we’re such a small proportion of the total. I seriously wish we had a totally different name for our condition – maybe it’s time for a rebrand, I’m sick of being lumped with the T2s. Vent over