Fucking Pharmac!!

[janno]

Oh Hooray!

I've just had a phonecall from my renal specialist.
According to Pharmac, I am not eligible for a certain drug because my haemoglobin is too high (ie too healthy).

The thing is, I have been on this drug for the last three years in Australia to keep my haemoglobin in a - wait for it - healthy range.

According to Pharmac's mentality, I have to cease the drug, let my haemoglobin plummet, thereby making myself increadibly ill again, and then they will approve my application because I obviously need this drug to stay healthy.

WTF???!!!!

Not only that, but letting myself get sick again is going to shorten the life of my transplant, which my specialist and I are working very hard to keep going at the moment.

So instead of my cost to the tax payer being about $10k a year, it will be more like $60-70k; the difference between transplant costs and dialysis.

I have written a very snotty letter to Pharmac threatening to go public - surely they don't want more egg on their faces in the media yet again. The downside is I am a fairly private person and would really hate to do this.

Anyone got any brilliant suggestions? Apart from bung the decision makers of Pharmac on dialysis - that'd give them a few insights.

Wankers.

[Lil_Byte]

I don't have any suggestions , but good luck with your battle

[Trudes]

Afraid I'm in the same boat as Lil Byte, wishing you all the luck in the world and good health!

[judecatmad]

Short of moving back to Oz, no brilliant ideas here either I fear that going public may be your only option.

Pharmac are clearly taking the drugs that they won't let anyone else have and are having some serious psych side-effects.......

Good luck with it all.

[sunhuntin]

good luck... take it public, get it out there. would fair go be any use in this?

what about docs that you saw in aus? would they be able to contact pharmac on your behalf?

one of my co workers is having a similar thing at the moment with iron pills. specialist told her to stop taking them [after shes been on them for at least 5 years] and now shes feelin like shit with headaches and all the rest. so now shes gotta go back to sqaure one to get back on the meds.

[canarlee]

fuck em and go public!


at least here they dont give you treatment according to your postcode!

in some parts of england they have said you cant have this drug but if you lived 5 mins down the road in a different county (and thats all it can be, 5mins down the road!) you can have the drugs you need???

[janno]

Thanks for the support!

If I don't have any joy, I will go public as I know there are others out there in the same boat, but probably less stroppy than I am or else don't know their way around the system to fight it.

At least I have friends in the media business!!

Meanwhile, 95 year olds are getting hip replacements . . .

[ManDownUnder]

Fly to Oz, get yourself onto their system, and somehow transport the drugs back to NZ?

Problem is that will maintain your healthy haemo levels so you'll never go onto the drug.

Or get unhealthy blood and submit that into the testing regime...

Yes - it's BS. Ring Campbell - and do a face to face with the Health Minister reminding them gently it's election time soon and while Pharmac follow the rules - the Govt MAKES the rules... get a pledge out of them to fix this.

[terbang]

Uh Oh, I know the look. Give em hell Jan and see if you can open up that can of worms for all to see. Oh and get well soon.

[Nasty]

....

I have written a very snotty letter to Pharmac threatening to go public - surely they don't want more egg on their faces in the media yet again. The downside is I am a fairly private person and would really hate to do this.

Anyone got any brilliant suggestions? Apart from bung the decision makers of Pharmac on dialysis - that'd give them a few insights.

Wankers.

A very snotty letter from you will not do much .. going public will also not achieve what you need. A letter from your oncologist in Australia and supporting documentation may help. Realise that these guys are totally political and the budget is set for them. I would also copy documentation to your oncologist and the CEO of the DHB ... it is the DHB who have the money to fund the drugs that Pharmac are stopping you getting to. I will pm my number and we can talk if you like ...

[shafty]

Janno, that sucks.

Suggest you e-mail your local MP and Tony Ryall, Oppositions Spokeman on Health - he's a switched on Cookie and loves something to get his teeth into. His e-mail is: tony.ryall@parliament.govt.nz

Good luck Mate

Shafty

[Chickadee]

Go public, start calling the TV programmes NOW!

Seems with all the bullshit you have to deal with the best option is to get another party involved to say WTF's up with you people!

[janno]

Thanks for the pms and great ideas people! Some things I hadn't thought of - I knew KB would give me a direction to go in. Such a cool way to help solve problems.

I've now got an action plan to work on - so handy that elections are coming up.

Thanks a bunch and shiver me timbers, mateys, in accordance to TLAP day.

Jan.

[ynot slow]

One thing Jan your attitude will get you there,don't give up,create noises.When in Palmy I saw heaps of women with radiation mostly for breast cancer,one was having a tough time with meds.Seems pharkmac wouldn't give her herceptin(this way before the last round of outbursts),cause she had one breast removed,but there was a large chance without it her other breast would need removing.Her oncologist kept at them and they relented,once it was explained the cost of drug(say $10000)against surgery,radiation,chemo etc (say $40000),sometimes they can't do basic maths,i.e spend $10 grand to save $60 grand.
Agree with the hip op statistic given,an example was mums hubby had a hip replacement and his surgeon said can you step up this ladder,not easily was reply,ok in next week for operation,seems they had money for the hip opps,he's ok and was back working after about 6 weeks allbeit part-time.All the best,Tony.

[NinjaNanna]

Spend the $500 bucks on a return flight, go back to your Specialist in Australia, explain to him that you are having an extended vacation in NZ and need a letter authorising filling your script and bring them into NZ.

Hopefully this will buy you enough time to work through the beaurocratic nonsense.

Good Luck

Ninja Nanna