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. :bash:

[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!:hug:

[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. :bash:

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:doctor:

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

[Nasty]

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

Yup it will get the script and cos Janno the cash to have the script filled. NZ doesn't subsidise scripts from other countries last time I looked.

[peasea]

That sucks, what's up with those clowns? haven't they heard of 'preventative treatment'?

Go down the 'cool head' route first with all relevant documents etc and if you don't get satisfaction THEN go public. That way you'll have more ammo to nail the grippers to the public wall.

At the end of the day, non bastardus carborundum (don't let the bastards grind you down) and stay fit and healthy. That way we might catch up with you on the road.

All the best.

[janno]

I can't say on a public forum what the next stage is, suffice to say I may be taking a trip to Aus soon and coming back with a bit more in my suitcases.

Which will buy me some time.

I've got about two months grace health wise to get something sorted before the shit hits the pharmac phan.

I've had an email today telling me they have passed on my email to the relevant person, so here's hoping the wheels are grinding.

Ah well. I don't have to look far to see plenty of people who are worse off than me, so I'll ponder that thought as I'm enjoying walking the barking bookends tonight.

[Ocean1]

Pharmac are simply implementing the policy they’re given. There are a huge number of economic holes in that set of policies but it’s unlikely that the facts of one case will change their mind. As Nasty said if the DHB can be shown that the long term cost (to them) of having you on that particular drug is less than the alternative there’s a good chance they’ll fund it. I’d expect your specialist to be talking to them about that, I'd expect your GP to be making a fair bit of noise too.

Above all try not to let the bullshit get you down J, believe it or not there are those who give a shit.

[Edbear]

Pharmac are simply implementing the policy they’re given. There are a huge number of economic holes in that set of policies but it’s unlikely that the facts of one case will change their mind. As Nasty said if the DHB can be shown that the long term cost (to them) of having you on that particular drug is less than the alternative there’s a good chance they’ll fund it. I’d expect your specialist to be talking to them about that, I'd expect your GP to be making a fair bit of noise too.

Above all try not to let the bullshit get you down J, believe it or not there are those who give a shit.



I have just read through this thread, and find your comments have some insight. I have just today, attended a conference that was at one point addressed by Dr. Peter Moodie, the head of Pharmac. Talk about coincidence! He is still a practicing Dr. as well as head of Pharmac and came across as an very human man who feels for his patients and the public of NZ in general.

He gave a very good insight into the department and how they function. Pharmac is funded by the DHB's out of their budgets and every year, Pharmac try to coax more funds from them. The DHB's have to balance Pharmac's requests against their other costs and there is not, unfortunately a bottomless bucket of money to fund everything everyone needs, and I use the term "needs", deliberately! Pharmac have to budget the needs of everyone and to increase funding for one drug means decreasing funding for others. We all have to budget according to our income and every week we make choices about what we can pay for and prioritise our spending. Pharmac are no different, except they are prioritising people's health needs.

They have a rigorous, and I stress, independent, evaluation process they go through when considering which drugs to fund and to what extent. How does one choose between people's needs when there simply isn't enough money to give everyone what they want?

He is in a "damned if I do, damned if I don't" situation, although I also stress that he wasn't coming across as a "poor me" type of person, just realistic.

The only way to improve it is to have more funding, and that is a Govt issue. Now before everyone starts a Govt. bashing thread, I am neutral here.

Dr. Moodie specifically addressed the Herceptin issue and explained the process they went through when setting the funding for it. It was already available and funded for other aspects of cancer treatment but they were addressing extending the application. They looked at it very carefully and consulted very widely with independent groups and medical experts and made a ruling based on giving as many people as possible the best treatment they could, again, looking at the cost/benefit ratio. In order to fully fund Herceptin for everyone qualifyling for it for 12 months, means cutting back on other funding for many other patients for doubtfully better outcomes. The graph showing life expectancy for all forms of treatment for HER2 cancer, showed that once again, media hype is playing on emotions and giving what may be unrealistic expectations. Of course, no-one would ever accuse the media of misinformation and sensationalising or slanting stories for ratings at the expense of objectivity, eh? (Tui).

I believe that in the situation posted, here, janno should pursue the matter through any available authoritative channel and it probably wouldn't hurt to involve the media - of course with caution due to the media's interest in ratings above all! But an understanding of the issues may be helpful.

[oldrider]

Jeeze janno, I love it when you talk dirty, thank you Phamac! :devil2:

Seriously: Totally agree with you. Bastards! :nono: John.

[Mole_C]

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.

If you're referring to John Campbell then thats a bloody good idea. Did an interview with him the other day and he was complaining about not having enough material for the show.

Could help you both out :yes:

[Ocean1]

Pharmac is funded by the DHB's out of their budgets and every year, Pharmac try to coax more funds from them. The DHB's have to balance Pharmac's requests against their other costs and there is not, unfortunately a bottomless bucket of money to fund everything everyone needs, and I use the term "needs", deliberately! Pharmac have to budget the needs of everyone and to increase funding for one drug means decreasing funding for others. We all have to budget according to our income and every week we make choices about what we can pay for and prioritise our spending. Pharmac are no different, except they are prioritising people's health needs.

Fuck it's hard to seperate personal feelings from cold hard ethical logic when it's one of your own. Not gona try, here's some stuff:

The percentage of GDP spent on health in NZ has grown every year for the last decade, and the growth is mildly exponential, (it's growing faster).
Every year there's new prodedure/techniques available which cost more but produce better outcomes.

I believe Pharmac receives most of their funding from DHBNZ, a sort of consortium of DHBs which manages joint and bulk funding issues. So the link between the local DHB and Pharmac isn't a direct one.

In theory health funding policy is driven by an ethically sound decision making process. It's based on the concept of gaining the maximum quality of life for the maximum time for each specific health procedure or intervention. There’s actually a unit used for such calculations called a “qually” (sp?) Procedures which produce the best return for the budget dollar are funded first, those which produce less beneficial or lasting returns come further down the list.

Procedures such as those which keep a child's ears free from repeated infection are near the top of the list because they represent the likelihood of a large number of years without the risk of deafness, and that for very little outlay. Procedures producing less certain improvements for less time (like heart transplants) fall off the bottom of the list altogether. If it's accepted that there's always going to be less money than necessary to keep everyone healthy then it's hard to argue with the above.

Except the system, (originally based on a Canadian model and re-written to fit NZ demographics and specific health issues by local health professionals), is continually re-tuned by politicians concerned with issues far from relevant to the above criteria. Like special funding to address inequities in outcomes for different groups/cultures. In short, it’s made less fair to buy votes.

Even in an un-tampered condition such a huge formulaic system will regularly produce nonsensical outcomes like J’s. It’s in cases such as this where actual common sense needs to be brought to bear. Unfortunately the common sense needs to come from the individual health professionals involved in each case, and they will always manipulate any system to gain the best advantage for their patients. That’s as it should be of course, but it means they can’t be relied on to provide an unbiased assessment in individual cases. So Pharmac and the DHBs have a hard time controlling such “ex budget” costs.

The entity which controls “special cases” is usually a beastie within each DHB called an extenuating circumstances committee. It may be that’s the door that J’s GP and specialist need to hammer on some.

[Toaster]

My thoughts are with you friend. Sorry to hear that red-tape again screws someone up the bum yet again.

[inlinefour]

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. :bash:

Yea, I also recommend that you go public. Sounds like typical bean counter mentaility, they see that they can cut costs in the short term, but are not bothering to consider the long term effects/cost. This is not the first time this has happened and from what I've seen from the media, it does have to become a public outcry via the media for the bean counters to be told to change their way of thinking. Rather than stand at the top of the cliff saying "don't jump". NZ healthcare would rather wait at the bottom, to clean up the mess? I guess not everyone survives, but a bit of common sense would state that its not the cheapest or the most ethical option. However since the gubbermint lets healthcare be run like a business, the bean counters are in control. I doubt thats likely to change either, I've seen/heard far worse as a nurse, but I won't go there. :mad:

[candor]

In my opinion it is more strategic to not go public.

As Govt may negotiate to give just you what you want to stop you stirring the pot.

Go public and you are not just fighting a battle for you but also for all others in your situation - which Govt is likely to fight harder.

First steps are presenting a reasonable cost benefit case for yourself as you've done here to those with power tro mybe make or influence a decision in your favour.

First document and write a friendly request laying out what you want and why.

Next step if declined then you look for a way to fight for your individual
rights to be met.

One possibility is to ask your MP to intervene - they can sometimes have a word in the right ear. Pick up their hotline to health minister etc.

Another possibility is a complaint to the Health and Disability Commissioner based on your rejection letter and whatever stupid reasons you can entice them to give. Trap Pharmac into fully documenting their rationale.

Be careful with this one (HDC) as they are as much "damage control agents" as they are unbiased mediators (which is what they make out). It will help if you can prove
1) not reated with dignity or respect
2) medical care not performed to adequate standard - for this a second opinion would help.

Perhaps a better option is a complaint to the human rights commission under the Bill of Rights Act.

You would need to complain that you have been discriminated against as a socially or medically disabled person because you have not received equal treatment to a similar class of person (use your imagination here to think up a similar class).

And where the bill of rights comes in is that the Govt is not permitted to deprive citizens of their right to life. "Right to life" does not just mean life it also means quality of life under this legislation. So if they let you suffer somehow by commission, omission or torture then they could be in breach of Public law (that governing the state).

Good luck - much can happen by power of the pen. I think its best to go that way before going public then if you need to go public you'll also have a paper trail and juicier story.

[Edbear]

Some very good advice here, and some further insight into the public system. No doubt many of us have had issues arising from both the funding and staffing of the Public Health System in NZ.

I almost died on the waiting list and only by good luck and my Missus ringing the hospital several times a week, got me the op.

The number of people dying on the waiting list has increased 120% over the past five years. This despite, as Ocean1 rightly pointed out, the Gummint pouring billions of dollars into the Public System every year. The health costs are also rising, again as Ocean1 said, due to the rapidly rising costs of new treatments, something else addressed by Dr. Moodie. By the way, I apologise, Dr. Moodie is the Medical Director of Pharmac, not the head. Thanks to the person who corrected my mistake.

Being in the industry, health insurance is becoming more of an issue these days and less than half, I think it's only about 38%, of NZ'rs have health cover. It is a minefield with around 60 providers and about 180 policies, most of which are a waste of money. Too many people are paying for insurance they are not going to be able to claim on when they need it. If anyone wants properly independent, (that's not commission-driven), advice you can PM me or call Lighthouse direct, 09-913 1867 or 1850. (Say I referred you).

[janno]

Thanks to all the replies - I've now got an arsenal of information and a better understanding of how things work.

I'm going to go down the "correct" channels first to see how things go - I should be able to get a supporting letter from my specialists in Brisbane - and then if I have no joy, I'll go to my MP, then as a last resort I'll try the media avenue.

Many thanks to everyone, it's really helped.

[deanohit]

Good one mate and good luck. =)

[Nasty]

Thanks to all the replies - I've now got an arsenal of information and a better understanding of how things work.

I'm going to go down the "correct" channels first to see how things go - I should be able to get a supporting letter from my specialists in Brisbane - and then if I have no joy, I'll go to my MP, then as a last resort I'll try the media avenue.

Many thanks to everyone, it's really helped.

Thats a good plan .... I know it sounds weird using media last .. but there are other ways .. and by not going public you have that as leverage.

[cooneyr]

......In theory health funding policy is driven by an ethically sound decision making process. It's based on the concept of gaining the maximum quality of life for the maximum time for each specific health procedure or intervention. There’s actually a unit used for such calculations called a “qually” (sp?) Procedures which produce the best return for the budget dollar are funded first, those which produce less beneficial or lasting returns come further down the list......

Sorry sort of :Offtopic: but this is exactly the same type of system used to determine the priority of roading projects. In the health system it sounds really cold and calculated but Benefit Cost Ratios (BCR's) make logical sense (well to me anyway). I know the system is screwed with by pollies etc but BCRs provide some degree of fairness to the system.

The down fall (and I'll give a roading example cause thats what I do) is that even if a project provides huge amounts of benefits the i.e. a massive improvement to the Auckland motorway system if the BCR is low because the costs are extremely high the project will be put down the list. You can very easily end up in the situation where there roads are severely congested hence there is a real need for something to be done but the costs of something just cant be economically justified. In the roading case there have been steps taken to "try" and account for other factors such as the extreme need for something to be done - Auckland again (I'm a cantab by the way).

I can only hope that the health system has some means of addressing issues like this i.e. your case Janno. My only little bit of advise is to very clearly and concisely point out the economics of the situation. For good and bad, money is the key to changing decisions such as yours. Point out the very high cost to the system for not havening the drugs (DHB costs and other costs to the country i.e benefits etc) in addition to pointing out the cost to your well being and family. The more evidence you have the better i.e. get as much data from your Ausi docs as possible.

Sorry I'm of no real help, but best of luck getting this sorted.
Cheers R