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Posts Tagged ‘NZ First’

The Cheesy Voting Sketch

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Following the recent announcement that Shane Jones would be a NZ First candidate for Whangarei in this years’ election, Jones appeared on TV3’s ‘The Nation‘. Interviewed by veteran broadcaster, Lisa Owen, Jones repeated Winston Peters’ mantra of not declaring which major party they preferred to coalesce with, post election;

Lisa Owen: So, in terms of forming a government, potentially forming a government after this election, the thing is Labour could probably come with the Greens, and you’ve said before it would be a long day in hell if you served under a Green government. Is that still your position?

Shane Jones: Well, the garrulous Aussie, Norman has gone. He’s where he belongs, in the Greenpeace. So, I don’t think you should treat historic statements as being static facts; that’s the first thing.

Lisa Owen: But Metiria’s still there. Metiria Turei was there when you made that comment, and she still is. I mean, she once described you as being sexist and said you were a 19th century man living in the 21st century. Would you be happy for her to be one of your bosses?

Shane Jones: Oh, well, I look forward to debating with her in the election, et cetera, and I don’t get too hung up about various rhetorical missiles that are flung around. But in terms of forming the next government—

Lisa Owen: So, you’ve mellowed about the Greens, have you?

Shane Jones: Oh, well, we must move on from the imperfect part of my career. We’re going into a new phase where there’s a lot more diligence; there’s a lot more focus, but the passion is still there. In relation to the formation of the next government—

Lisa Owen: And more pragmatism?

Shane Jones: There’s one thing you can say about me, I was never doctrinaire or dogmatic. That is why, in many occasions, I parted company with the Labour party.

Lisa Owen: So you could work with the Greens in government?

Shane Jones: Well, I am pragmatic, but the reality is — first create the leverage by boosting the vote.

Lisa Owen: But you’re not ruling it out, then?

Shane Jones: No, all I’m saying is I’m going to win Whangarei, and I’m going to help Winston harvest votes up and down the country in nga hau e wha — the four winds — and then the wind that blows us into parliament is going to put the country on an entirely different course.

A verbose way of telling us he’s not telling us.

Which, because of NZ First’s continuing  bizarre policy of  refusing to make clear  their coalition preferences, reminded me of Monty Python’s cheese sketch. Adapted to our present circumstances, I present to you, The Cheesy Voting Sketch;

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(A customer walks in the door.)

Customer (John Cleese): Good Morning.

Owner (John Clarke, in this version): G’day, mate. Welcome to Trev’s 4-Square Grocery Shop!

Customer: Ah thank you my good man.

Owner: What can I do for you, mate?

C: Well, Well, I was sitting in the public library on Victoria Street just now, skimming through ‘Only their Purpose is Mad‘ by Bruce Jesson, and I suddenly remembered I needed to buy a few cans of the edible nutritious seed from certain domesticated and husbanded plants of the legume family, specifically from the genus Phaseolus vulgaris.

O: Eh?

C: Beans, preserved in a tin plated and lacquered steel cylinder, sterilised by heat treatment.

O: Ah, canned beans!

C: In a nutshell. And I thought to myself,  I curtailed my Jessoning activites, sallied forth, and infiltrated your place of purveyance to negotiate the vending of some legumis comestibles!

O: Come again?

C: I want to buy some beans.

O: Oh, I thought you were complaining about the ‘Lorde‘  CD I was playing!

C: Oh, heaven forbid: I am one who delights in all manifestations of the screetching diva.

O: Sorry?

C: Nah, she’s cool, mate.

O: So she can go on playing, can she?

C: Most certainly! Now then, some beans please, my good man.

O: (lustily) Certainly, sir. What would you like?

C: Well, eh, how about a little Red Kidney?

O: Sure, mate. Now, would you like Watties, Pams, imported Italian, or Trev’s Surprise?

C: Pray explain, what is ‘Trev’s Surprise’?

O: Well, mate, it’s like this. You put your cash on the counter, I go out the back; grab half a dozen various cans at random; strip off  their labels, and you buy those.

C: But… how do I determine  the contents of those cans, my good man? They could practically be anything!

O: Correct, mate. They could indeed.

C: Prithee, good fellow, how does that benefit me?

O: Oh, it doesn’t, mate. You simply leave the choice up to me and it’s a total surprise to you when you get the cans home and open them up. They could be beans, peaches, sardines, jam, anchovies, marmalade, dog food, anything!

C: I’ve never heard of anything quite so ludicrous, dear chap. No one would be mad enough to  let you make such a choice on their behalf!

O: Oh, I beg to differ. It’s very popular, mate.

C: Is it!?

O: Oh, yeah, mate , it’s staggeringly popular at this time of the year, especially politically.

C: Is it!!??

O: Oh yeah.

C: What do you mean,’especially politically’, my little bourgeois entrepreneur?

O: Well mate, people give their vote to New Zealand First. Winston then takes your vote and applies it to another party of his own choosing by picking the one he goes into coalition with. You don’t choose, Winston does.

C: I’ve never heard of anything so unlikely! How many people allow this?

O: Oh,  about 10%.

C: Really.

O: Yeah, mate.

C : Really?!?!

O: Yeah, mate. I shit you not.

C: And what about the remaining 90% of voters? How do they choose whether they prefer a National-led or Labour-led coalition?

O: Oh, they make their own minds up. They want to know what they’re getting. Bit boring really, if you ask me.

So, would you like to try Trev’s Surprise, mate?

C: No thank you,  I prefer to know what I’m getting.

It might be dog tucker.

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(With a nod & apologies to Monty Python’s Flying Circus. I’m sure they’d understand.)

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References

Radio NZ:  Shane Jones to stand for NZ First in Whangarei

Scoop media: The Nation – Lisa Owen interviews Shane Jones

Youtube: The Cheese Shop sketch, Monty Python

Previous related blogposts

John Banks and Winston Peters, Apples and Oranges

A Message to Winston; A Message to John Key; and a Message to the Regions

Winston Peters recycles pledge to “buy back state assets” – where have we heard that before?

Expose: Winston Peters; the 1997 speeches; and neo-liberal tendencies

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This blogpost was first published on The Daily Blog on 2 July 2017.

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Radio NZ: Politics with Matthew Hooton and Mike Williams – 17 March 2014

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– Politics on Nine To Noon –

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– Monday 17 March 2014 –

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– Kathryn Ryan, with Matthew Hooton & Mike Williams –

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Today on Politics on Nine To Noon,

Winston Peters and the possible make-up of the next government. Moves to link school funding to performance.

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Click to Listen: Politics with Matthew Hooton and Mike Williams (23′ 51″ )

  • Winston Peters, NZ First
  • Judith Collins, Orivida,
  • Helen Clark
  • Green Party transport policy
  • Hekia Parata, education policy, school fundsing system

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Radio NZ: Nine To Noon – Election year interviews – Winston Peters

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– Radio NZ, Nine To Noon –

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– Wednesday 12 March 2014 –

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– Kathryn Ryan –

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On  Nine To Noon, Kathyrn Ryan interviewed NZ First’s leader, Winston Peters, and asked him about coalition negotiations, policies, polls, and other issues…

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Radio NZ logo -  nine to noon

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Winston Peters is the leader of NZ First, which is polling at around the 5% threshold for getting MPs into parliament without winning an electorate seat, meaning it could yet hold the balance of power after voters go to the polls on September 20.

Click to Listen: Election year interviews  ( 35′ 17″ )

 

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Radio NZ: Nine To Noon – Election year interviews – David Cunliffe

26 February 2014 Leave a comment

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– Radio NZ, Nine To Noon –

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– Wednesday 25 February 2014 –

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– Kathryn Ryan –

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On  Nine To Noon, Kathyrn Ryan interviewed Labour’s leader, David Cunliffe, and asked him about coalition negotiations, policies, polls, and other issues…

 

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Radio NZ logo -  nine to noon

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Click to Listen: Election year interviews (27′ 50″ )

A major policy statement by David Cunliffe;

@ 22.00:  “We will create incentives for private employers to be certified living wage employers, who pay the living wage  to all their employees, by giving them a preference in  Crown contracts.”

This will not only support firms that pay their staff properly – but will de facto give preference to local businesses to supply goods and services!

If this doesn’t motivate Small-Medium Enterprises to switch their allegiances from the Nats to Labour, I don’t know what will!

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Latest Roy Morgan Poll: next govt too close to call?

15 December 2013 13 comments

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The latest Roy Morgan Poll has a dead tie between National and a Labour-Green coalition. Both are currently polling at 45%.

The actual Party figures are as follows;

National-led bloc,

National – 45%

Maori Party* – 1.5%

ACT* – 0%

United Future*** – 0%

Translated into National-led Seats:  54 (N) + 1 UF = 55

Labour-led bloc,

Labour – 30.5%

Greens – 14.5%

Mana*** – 1%

Translated into Labour-led Seats: 37 (L) + 18 (G) + 1 = 56

Wild cards,

Conservative Party** – 2% (nil seats)

NZ First – 5% (6 seats)

Number of respondents who refused to name a Party: 4%.

Assuming that,

  1. The Conservatives win no seats nor cross the 5% threshold;
  2. Peter Dunne and Hone Harawira retain their electorate seats but do not win any more, nor increase their Party vote;
  3. ACT loses Epsom and does not cross the 5% threshold;
  4. and the Maori Party lose all three seats;

That leaves NZ First as the “King Maker”. And if, as this blogger suspects, Peters may decide to coalesce with National,  that would create  a repeat of the 1996 Election.

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That coalition deal ended in disaster for Peters And nearly destroyed his Party.

However, things are not quite so simple. Check out the Roy Morgan graph below. Specifically, focus on polling leading up to the 2011 election. Notice how as both Parties campaign, National’s support drops whilst Labour’s rises (1)?

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Roy Morgan 11 december 2013

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In between elections, Opposition parties support falls away. In comparison to nightly media coverage for government ministers and policies, Opposition Parties do not gain similar coverage of their policies. Parties like Labour and the Greens are severely restricted to five-second soundbites.

It was only when Labour and the Greens announced the NZ Power policy on 18 April this year that the Labour and Green Parties rose in the polls (2).

Next year’s election should be no different; Opposition Parties support will rise as their  policies are put before the public, whilst Government support will fall as voters consider alternatives.

This blogger still predicts that we are on course for a change in government next year and we will be looking at a Labour-Green-Mana Coalition government.

Additional to that, I predict;

  1. ACT will not win any seats in Parliament and will eventually suffer the same fate as the Alliance Party,
  2. Peter Dunne will retain his seat by the barest margin. It will be his last term in Parliament,
  3. Paula Bennett will lose her seat but return on the Party List,
  4. National will fare badly in Christchurch’s electorates,
  5. The Conservative Party will not win any seats, electorate or List,
  6. The Maori Party will lose all three current electorate seats, back to Labour,
  7. John Key will resign as National’s leader and the following leadership power-struggle between Judith Collins, Steven Joyce, and Bill English will be brutal. Collins will win, with Cameron Slater throwing nasty dirt at Joyce and English,
  8. If NZ First coalesces with National, expect one or two of it’s MPs to defect or resign from Parliament,
  9. A new Labour-led coalition will govern for three terms, minimum,
  10. Collins will be ousted after a dismal showing by National in 2017, and the Party will pull back to a more moderate, centrist position.It will reassert it’s pledge not to sell any further state assets.

Really, politics is more entertaining than any “reality” show on TV.

And as always, Roy Morgan is the only poll that calls cellphones as well as landlines.

* Not expected to survive the 2014 election.

** Not currently represented in Parliament

*** Electorate-based Party only

This blogpost was first published on The Daily Blog on 12 December 2013.

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References

Roy Morgan Poll – 11 December 2013

Previous related blogposts

Census, Surveys, and Cellphones

Mr Morgan phoned

Another good poll for a LabourGreen government

Census, Surveys, and Cellphones (Part rua)

Census, Surveys, and Cellphones…

Census, Surveys, and Cellphones

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Opposition parties work together on “orphan drugs” (part wha)

10 August 2013 2 comments
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Continued from: Opposition parties work together on “orphan drugs” (part toru)

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NZORD - seminar - 1 August 2013 - Wellington - pompe disease - manual cover

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NZ, Wellington, 1 August 2013 – A seminar in Wellington was held NZORD, the New Zealand Organisation for Rare Disorders , to discuss the problem of lack of funding for “orphan drugs”. People with rare diseases are missing out of medication – a life-threatening situation.

After a break for lunch, Wallace introduced the four members of Parliaments;

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L-R: Barbara Stewart (NZ First), Kevin Hague (Green Party), Annette King (Labour) and Paul Hutchison (National) – Wallace Chapman (standing)

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Associate Minister for Health, Paul Hutchson, took the podium first;

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Minister Hutchison began by acknowledging his Parliamentary colleagues, Wallace Chapman, and John Forman.

Of John, Hutchison said this,

“May I acknowledge John Forman and the Organisation for Rare Diseases for all the the work that you do, John. Absolutely committed,  enthusuiastic, and assiduous. So please may I express that appreciation…”

The Minister continued by saying that he was sorry he was not present earlier in the day to hear the previous speakers. He then launched into his speech,

“… The principle of Universality does not mean that the public should pay for every test, treatment, or medicine, that improves health no matter the price of how effective it is. You may be aware that a new concept has crept in called proportionate universality, universalism, which in other words, is targetting. And it’s something that appears to be, ah, almost superceding the principle of universalism.

In his press release relating to the ombudsman, John Forman says the Ombudsman noted the contestable legal argument about whether PHARMAC appropriately excludes social and ethical factors from their consideration, though he said it was not his role to make a definitive decision on that legal dispute’.”

Minister Hutchison “forgot” to mention also that the same Ombudsman,  David McGee, had been highly critical of   PHARMAC’s  policy that “supported the position that high and low cost medicines should  be examined by the same decision-making criteria, and found that whilst it was lawful, was not reasonable“.

If Minister Hutchison had attended the earlier speaker’s addresses, he might have remembered to add that salient point. He continued,

“And John Forman also said that it is time for PHARMAC to acknowledge that a strict economic focus without a moral compass is abandoning patients at the margins. We hope that this opinion will cause PHARMAC, government ministers,  the health select committee, and other officials to respond with serious scrutiny and review of PHARMAC’s policies regarding socialised medicine for rare diseases. I don’t consider for one moment that PHARMAC acts without a moral compass… but  nothing should be for granted.

And I do note that PHARMAC’s key objective is  to  secure for eligible people in need of pharmaceuticals the best health  outcome that are reasonably achieved from pharmaceutical treatment and from within the amount of  funding  provided. I also highly respect the members of the Pharmaceutical Advisory Therapeutic Committee who are all dedicated clinicians who have committed their expertise to  attempt fairness and equity guided by a scientific evidence basis.”

I doubt if this next bit went down well with the audience,

“I must say I well remember Sir William [Bill] Birch telling me some years ago that from every nook and cranny, town and hamlet in New Zealand, comes a perfectly legitimate reason to spend money. The whole skill is how to prioritise it.”

If Minister Hutchison was invoking the ghost of Bill Birch, known for his extremist monetarist views, then he had come to the wrong place. This was not a Chamber of Commerce or NZ Initiative (formerly the NZ Business Roundtable ) business lunch. He was addressing desperate people who were seeking answers and solutions to life-threatening diseases – not hearing that the purse-strings were being closed by an acolyte of a past Finance Minister.

The Minister continued,

“And I guess that’s the blance and the tension that we have. Where do you achieve equity and fairness in comparison to the resources that we have available. New Zealand does indeed now-a-days spend amongst the top of  OECD countries in terms of it’s overall health budget. Some of you may say  that the pharmaceutical budget in comparison to the whole $14.7 billion is less than it should be although of course that is arguable.

So what’s PHARMACs position? As you know, PHARMAC pointed out there have been several reviews of the question of New Zealand providing subsidised access to high cost medicines.  Firstly in 2006, and then of course the McCormick report in 2009. They explicitly recommended against a separate high cost medicines funding [board?] approach for New Zealand. The reason they gave for this were that the main rationale for such a fund is to improve health outcomes rather than because of the particular charachteristics of the medicines themselves are a fundamental importance. The Panel noted that the PHARMAC model is already based on the objective of improving health outcomes. The panel was not convinced that the approach used by other countries such as Australia was superior to the status quo.

Government responded to a number of that reports recommendations and that led of course to the establishment of the  Named Patient Pharmaceutical Assessment scheme, which  we’re now  currently running with.

I also note  that most of PHARMAC’s funding is already committed to high cost medicines.  The PHARMAC annual review shows that the top 20% of patients account for … 86% of expenditure. That’s 20% of patients accounting for 86% of expenditure. Which means a smaller patient group is obtaining a greater share of pharmaceutical expenditure than the majority.”

“That’s 20% of patients accounting for 86% of expenditure.’ – is an interesting statistic. Is it code for implying that that a small group receive a disparate amount of tax-payer funded support?

How does that statistic compare  to the 10% of top income-earning families earning 30% of the income?  (see: Household Economic Survey 2010) Or the wealthiest 10% of New Zealand families controlling/owning  approximately  50-60% of  New Zealand’s wealth?  (see:  New Zealand Institute’s The Wealth of a Nation 2004)

Minister Hutchison concluded his speech,

“…I think it’s also important to point out that since the NPPA has come into being, that we’ve gone from where there was the previous regime which was $2.1 million and now  to $8 million. Clearly it’s not enough.There will always be pressure on it.

The last thing I just wanted to mention was that there is going to be  future reviews and right now PHARMAC is keen to look at new ways of serving  New Zealanders. That’s why  they are currently conducting their  significant review on operating policies and procedures. First thing under review includes the criteria by which PHARMAC makes it’s decisions. This  is an important opportunity to define what best… health outcomes means in terms of it’s  legislative objective,  and in doing so to change the mix of treatments that are ultimately funded  within the budget that is made available.

As you’re aware PHARMAC is  meeting communities around New Zealand in a series of  eleven forums and here is a superb opportunity for everyone here. I would put in a submission, attend the forums, and express your views.”

Wallace asked the Minister for his views on  creating a separate Rare Diseases Funding Agency, with a budget of around $25 million. Wallace explained that many people in the room were “falling through the gap” and a RDFA could plug that gap.

The Minister’s response was less than helpful, and defaulted to a predictable excuse not to consider the option. He said,

“…The issue is always once you get separate funding streams, you get extra bureacracy, you get an extra pressure on that funding stream as well as the main Schedule. So that it may be that you find you  have to take away from the main Schedule and vice versa. It’s a very difficult dilmemma. I think that this latest round of opportunities to relook at  how  PHARMAC  is setting it’s basic criteria of improving health outcomes is an opportunity to explore it.”

It is unclear as to why the Minister actually turned up to the seminar. His speech offered nothing new except, perhaps, to announce the  upcoming PHARMAC reviews.

If National is going to spring a herceptin-style change in policy toward sufferers of rare disease, the Minister was less than clear in his speech.  To use the Minister’s own words, he had expressed the status quo as policy and nothing more.

The real surprise was to come from the next speaker, Labour MP for Rongotai, Annette King;

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Ms King has served as Minister of Health in the previous Clark-led government and had over-seen the re-building of the health sector after the disastrous cuts to services and budgets in the late 1990s. Ms King put an end to user-pays within the public health system, implemented by the previous National government.

Ms King firstly acknowledged those with rare disorders who displayed “advocacy, tenacity, longevity, and your committment to fairness and equity in health.” Ms King added that, “I particularly want to thank John Forman, who has dedicated years to NZORD and if knighthoods actually went to the people who really deserved them, then John certainly would get one.

That suggestion  was received with  a loud round of applause.

Ms King continued,

“…I think the problem has really  reached a critical point because we have, as you heard from Dr Hutchison, there have been many reviews into this issue, going back to the 2007 New Zealand Medicines Strategy; the 2010 report on high cost, highly specialised medicines;  and as you know from that we still haven’t had this issue resolved for those who have very rare conditions. PHARMAC now, as we’ve already heard, have established what they call a new special pathway, their Named Patient Pharmaceutical Assessment, the NPPA, which follows the review of the exceptional circumstances. But by my reading of it, is that this policy runs counter to their current policy settings, because when you read it, they must take account of things like if a dollar is spent in one area, it is not available in another.

That they must work to obtain the greatest  benefit. That the best place  to invest  the next dollar, to achieve the best access to health. So these are the things that they have to take  account of, even in the NPPA policy. But at this point I do want to stress as John Forman has on a number of occassions, that I do support PHARMAC in their   role of getting the best possible deal for medicines of the bulk of  New Zealanders. I think they have done a fantastic  job over many years. In fact I think they’ve been a stand out organisation.

And the bottom line for Labour in  terms of  the Trans Pacific Partnership negotiations, the latest round of free trade aggreements,  is that PHARMAC continues to have the right to purchase our  pharmaceuticals  to get the best health outcomes from effective budget management.”

Then came the ‘crunch’ moment,

“…But I think there has to be, and we have to acknowledge, that what we have done in the past,  as you saw from the question that John just asked, there has to be a change in the way in the way we deal with orphan drugs.”

Ms King said that it was clear that the NPPA scheme was not working for people with rare disorders. PHARMAC was able to over-rule any recommendations to purchase drugs for patients with rare  disorders. Ms King then stated,

“It is time for us to separate the two issues…”

“In 2014 our election policy will have two main parts to it. First of all the establishment of an orphan drugs policy.That policy will include international information sharing and monitoring  of orphan drugs and sharing that information as others countries do, about the clinical viability and acceptability of those drugs.
The second, I believe, is very important, and that is the establishment  of a fund with it’s own Board. Now I don’t believe this has to be [as] highly bureacratric as Paul mentioned. I believe that you can set up a separate Agency within, for example the Ministry of Health,  to give it’s freedom, but it has it’s own Board. And it has it’s own fund to administer.”

“So one of the things that would need to happen soon after an election would be the establishment of on implementation working group, which could be made up of clinicians; of patients; of community representations, and others,  to put in place the details and work on the criteria for access. I do believe that in separating the funding and operation of the orphan drugs policy from PHARMAC. It will let them get on with doing what they do really well, and I think in some ways it will free them to get the best they can for the most of us who don’t need special medicines. But it will mean that for those who have rare disorders, that there will be a fund around that.’

Ms King said,

“We’d be looking at a fund between $20 to $25 million.”

Which is approximately what National spent on the Rugby World Cup in 2010 – $26 million of taxpayer’s money, on funding the tournament’s deficit. [Update: And on 8 August it was announced hat National would be giving a $30 million taxpayer’s subsidy to Tiwai Aluminium Smelter.)

“…That would be the way that we’d go in New Zealand, in line with other countries, including our closest neighbour Australia, who have managed a separate orphan drugs policy, for many, many years. And the advantage I suppose  from here is that we can learn from the mistakes from others, look at ways we can get the best value from such an agency.”

Ms King concluded that she believed this was a policy that other parties from the Opposition would support this new policy.

The audience responded enthusiastically to Annette’s announcement.

Wallace welcomed the Labour Party policy, and referring to  a Labour-Green-NZ first coalition, asked Barbara Stewart, “actually, which way will Winston go, Barbara?”

She smiled coyley, responding “we’ll just have to wait and see“.

That elicited  a mix of laughter and “awwwww” from the audience.

Next up, Wallace introduced Kevin Hague, from the Green Party,

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Kevin began with,

“Congratulations to Jenny [Jenny Noble – one of the seminar organisers] and to  “Sir John”… [laughter]

… And acknowledging my Parliamentary colleagues. Could I give a special acknowledgement to Paul Hutchison who’s gone now of course. National wasn’t going to have someone here. But Paul decided that that wasn’t ok, so he came along at short notice. So I didn’t agree with anything he said, but it was really great to have Paul here.”

Kevin expressed his regret at not attending the morning part of the seminar,

“Can I give you an apology for having missed this morning’s programme, as I thought it was a really exciting-looking programme. I intended to be here  for the entire time but I had to sit on the Select  Committee for the Pike River  Implementation Bill…”

Kevin continued,

“…My starting point actually is the right to life. Because that basic human right, it’s pretty universally acknowledged, seems to have embedded in it, the right to health.”

Kevin referred to the UN human rights treaties discussed earlier in the day. He said that for the right to life to be meaningful, it had to include the right to health. He acknowledged the high cost of medical treatments and the need to ration  those dollars. He said he “unashamedly” used the word “ration”.

“Governments decide whose needs will be met and whose will not be met.”

Kevin referred to “utilitarianism; the need to stretch health dollars for the greatest gain for the greatest number. It is only PHARMAC that tries to do that – the rest of the [public] health sector does not use this system.

While Kevin did not disagree with the concept of utilitarianism, he said that those whose health needs are furthest away, from the right to health,  will tend to be  those whose health needs are not met.

“And I don’t believe that that can be an acceptable consequence,” he added.

“So for that reason , we believe that the New Zealand health system needs to be able to have a second approach… Our approach is very congruent indeed with that you just heard outlined by Labour. I think  it’s very exciting indeed that Labour and ourselves have that same approach…”

Kevin said that whilst he believed that some of PHARMAC’s criteria for cost-benefits could be amended to take other criteria into consideration – such as participating in the workforce –  that he did not believe that the Agency should be bound by the “right to life” argument. Kevin preferred keeping PHARMAC’s “structures” as simple as possible, and keeping it’s cost-utility as straight forward as possible.

He would not “load” PHARMAC with the responsibility of resolving the orphan drugs and rare disorders  issues.

Kevin spoke to the PHARMAC representative in the audience and said,

“I would say just keep doing what you’re doing now, Stefan.”

Kevin then added,

“But. We are going to create another fund, which is specifically to be used on this right-to-health basis. I have no problem with  the cost effectiveness being one of the  criteria that is  used on the fund, but it’s  only one of a range of criteria. And I have no problem with PHARMAC’s people doing the analysis, but it can’t be PHARMAC that makes the decisions and I favour an independent Board very much as Annette outlined under Labour’s policy.”

Kevin said that even under two  systems there would still be inequities as there would always be a mis-match between dollars available and the need it has to try to cover. He said no system could be perfect in this regard.

“But using the two approaches actually reduces the size of that inequity, and that has to be a good thing.”

Kevin said “a great injustice has been committed” and the Greens would work to end that injustice.

Again, the audience responded with enthusiasm, obviously welcoming the Green position on the issue.

Wallace then introduced the last political speaker, New Zealand First’s spokesperson on Health, Barbara Stewart;

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Barbara began with a greeting and an apology for not being present for the first part of the seminar. She explained that the House was sitting under Urgency and extended hours. She congratulated John Forman for the “wonderful job he has been doing over the many years”, and thanked him for continuing to keep NZ First appraised of the issues surrounding rare disorders and orphan drugs. Without further preamble, Barbara launched into her policy speech. She got straight to the point;

“In NZ First, we believe that as a First World country, we should be able to afford access for orphan drugs. There is an underlying right to health  care. We are very aware that sufferers of rare diseases deserve fair treatment when it comes to access to orphan drugs. So we’ve been very pleased to hear what  Annette has announced. And I know that  Kevin thankfully  supports it, and I know that  we would in New Zealand First as well.

The last thing that want  to see is  people keeping on falling throught the gaps. The status quo needs changing. There is nothing surer than that. Particularly for orphan drugs. New Zealand was once thought of as one of  the highest  for the quality of  healthcare in the OECD. And it’s interesting to note that this ranking is slowly dropping away.”

Barbara said that many other countries ahead us on the OECD scale did indeed supply medicines for rare diseases. She said that NZ First has looked at the Australian model and “it appears to be successful“.

Barbara said,

“Here we would support Annette King with her model that she is proposing.” She added, “we don’t want to see New Zealand behind the rest of the world”.

Barbara acknowledged that PHARMAC has done a good job over the years, but that it was time “for a review”.

“We’re disappointed to see that the government, through PHARMAC , seems to be taking a relatively hard-line approach on medical funding and we know that this is putting people’s lives at risk… This is an issue that does need to be resolved.”

“So, we believe that equity and fairness is essential and whatever we can do to ensure that sufferers of rare diseases… can have access to the best treatment, we will do.”

Barbara concluded her speech with those words and Wallace thanked her.

NZORD director, John Forman then read out a statrement from the Maori Party. In it, they apologised for not being able to attend. Reading from the paper, he said,

“The Maori Party promotes the idea of a separate policy process for managing New Zealand’s supply of orphan drugs for rare disorders. We have a particular interest in  orphan drugs access policy through our support of people living with Pompe Disease, a  serious muscle wasting disease, that without treatment will result in respiratory and cardiac  failure. We understand the exceptional circumstances approach towards supporting applications for access to specialised and expensive medicines, such as enzyme replacement therapy, has yielded adverse impacts on too many individuals. And we cannot support any policy effect which results in government picking winners and losers.”

The Maori Party statement went on to state that there was an impact on  those suffering rare diseases by the inequitable decisions of this government. “There is a profound injustice at play”  that some families were impacted simply because of the rarity  of certain diseases and the consideration of appropriate treatment. The statement concluded by acknowledging the work done by organisations such as Muscular Dystrophy, the Lysosomal Diseases New Zealand, and New Zealand Organisation for Rare Disorders.

Wallace then opened the floor for questions.

In answer to a question as to when the Parties present would implement a separate Funding Agency, Kevin Hague replied, “in the first hundred days“.

Annette agreed with Kevin that it would be done “as soon as possible“. She gave a “solid committment that this would happen“.

This blogger then asked Barbara Stewart a question relating to her Party’s committment to a separate Funding Agency for orphan drugs. I confirmed that her Party would support a separate Funding model for orphan drugs, and she replied,

“We would support that, yes.”

I asked my follow-up question,

“…Here’s the problem. Is that, it’s  fine for you to sit there, saying you support it… but if your leader decides to go with National, it’s not going to happen, is it?”

To which Barbara replied,

“Oh, we have to wait until after the election before we can actually say anything at this point in time.”

Wallace suggested that Barbara txt-message Winston now to find out. She declined, and added,

“No, we do always say that will wait until the voters say what they’re going to say and then we work it through from there.”

The seminar continued with more questions and answers from the audience, including representatives from pharmaceutical companies and PHARMAC.

A talk was presented by Daniel Webby on his very personal experiences with living with a rare disorder.

John Forman presented his speech on issues and problems surrounding rare disorders and orphan drugs. His slide presentation finished with this image;

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A sobering conclusion to John’s speech, I thought.

My own conclusion from listening to the representatives from Labour, The Greens, NZ First, and the Maori Party, is that all profess to support a separate funding agency for orphan drugs.

But only Labour and the Greens can be counted on  to carry out their pledge.

New Zealand First states that it supports a separate Funding Model – but without knowing which way Winston Peters will move post-2014, then his Party’s policies must be viewed with uncertainty.

The Maori Party is in an even more untenable position on this issue.  Traditionally, they have viewed Labour with disdain, and instead chosen to coalesce with National. Unless the Maori Party makes a separate funding model for orphan drugs a bottom-line negotiating point – then their policy-pledge will go nowhere.

New Zealanders living with rare disorders, desperately seeking life-giving treatment, are experiencing stress, anxiety, fear, and an unnecessary interuption to their lives – on top of the effects of their disorders.

Yet, they have come far from their early days when they first approached PHARMAC for assistance, and were constantly knocked back. Those were dark days for people like John, Freda, Allyson, Daniel, Jenny, and many others.

But after this seminar, they found recognition for their efforts; understanding for their plight; and something else to bolster their spirits…

They found hope.

This blogpost was first published on The Daily Blog on 9 August 2013.

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Copyright (c)  Notice

All images are freely available to be used, with following provisos,

* Use must be for non-commercial purposes.
* Where purpose of  use is  commercial, a donation to NZ Organisation for Rare Disorders is requested.
* At all times, images must be used only in context, and not to denigrate individuals or groups.
* Acknowledgement of source is requested.

Previous related blogposts

Priorities? (19 Oct 2011)

Terminal disease sufferer appeals to John Key (12 Nov 2012)

Terminal disease sufferer appeals to John Key – Update & more questions (28 Nov 2012)

Health Minister circumvents law to fulfill 2008 election bribe? (18 Dec 2012)

Johnny’s Report Card – National Standards Assessment – Compassion (9 Jan 2013)

“There’s always an issue of money but we can find money for the right projects” – John Key (20 Jan 2013)

“One should judge a society by how it looks after the sick and vulnerable” – part tahi (4 March 2013)

“One should judge a society by how it looks after the sick and vulnerable” – part rua (4 March 2013)

“One should judge a society by how it looks after the sick and vulnerable” – part toru (4 March 2013)

Additional

NZORD

UN Special Rapporteur on Health

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Opposition parties work together on “orphan drugs” (part toru)

8 August 2013 3 comments
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Continued from: Opposition parties work together on “orphan drugs” (part rua)

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NZORD - seminar - 1 August 2013 - Wellington - pompe disease - manual cover

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NZ, Wellington, 1 August 2013 – A seminar in Wellington was held NZORD, the New Zealand Organisation for Rare Disorders , to discuss the problem of lack of funding for “orphan drugs”. People with rare diseases are missing out of medication – a life-threatening situation.

The seminar’s next guest was introduced; Dr Greg Coyle. Dr Coyle is a social policy analyst and manages the NZ Salvaton Army’s relationships with the Ministry of Social Development,  Housing NZ, Dept of Corrections, Ngai Tahu, Tainui, and Otago University. He is a member of the NZ Institute of Directors, Deputy Chair of Laura Fergusson Trust (Wgtn), and has a Ph.d. and Masters in Public Policy, in the area of fairness;

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[Taken from Greg’s speech notes] “This paper is about fairness and I am grateful to the New Zealand Organisation for Rare Disorders for the opportunity to present these ideas. I wish to talk about about three things. Firstly I will discuss one view of the anatomy of fairness. Secondly, using these ideas, I will examine how fairly PHARMAC has treated sufferers of rare and orphan diseases in relation to it’s wider statutory purpose. Finally I will propose a new funding mechanism for pharmaceuticals for sufferers of rare and orphan diseases which will, I believe, provide cost control and fairness to individuals and the wider community.”

“Fairness is something we each quite easily recognise when we see it, but have great difficulty describing it and agreeing on what it actually is.”

“Gauld described the Social Security Act 1938 as the political and legislative foundation for social welfare in New Zealand. This  social reform was based on a “fair go for all”. The legislation placed New Zealand’s concern for the least well off on a fairness platform.

In 2013, the fall-back position  is now commonly expressed as “well I accept something may be unfair, but who says the world is fair anyway?” as if fairness is now an unreachable and unnecessary attainment. Perfect fairness may well be unattainable, but acceptable levels of fairness in today’s political and social  landscape seems not to be universally accepted.” 

So the moral question here is how much fairness or how much equality is too much to aim for? How much is not enough? How much unfairness and inequality, in terms of state distributions, is our society prepared to tolerate?”

“Fair distributions to citizens are particularly difficult for OECD governments considering the increasing costs of public healthcare, especially pharmaceuticals. Again the question is not why we should ration  medicines, but rather how much rationing are we prepared to tolerate?”

“Hamilton describes this balancing act in terms of ensuring that there is minimal granting of special privileges to favoured individuals, and also ensuring the absence of social abandonment of those who require assistance. More particularly, what we are concerned about here is the process of micro-rationing  of pharmaceuticals to individuals.”

“[John] Rawls’ definition of fairness contends that, in liberal democratic societies, distributions should ensure each person has an equal right to the most extensive liberty compatible  with a similar liberty of others. Where social and economic distributions are to be unequal, they should be arranged so that distributions  are of the greatest benefit for the least advantaged… “

“This fairness principle leads decision-makers to ponder if their decisions would be considered fair by the most advantaged  people in society if, at an instant, they became  the most disadvantaged and required the distribution  for themselves […] This approach is not dissimilar to the maxim “do unto others as you would have them do unto you” which Blackburn contends can be found at the base of almost  every ethical tradition.”

Greg described the functions of PHARMAC, both on the national (meso) level and the individual (micro) level. He said that “sufferers of rare and iorphan diseases commonly fall into this [latter] category presenting in circumstances described as exceptional“.

He said that with regard to the Agency’s  national purchasing strayegies, “PHARMAC does an excellent job of consistently providing subsidy for an adequate range of quality pharmaceuticals” and “estimated that PHARMAC has saved approximately $1.17 billion over 14 years“.

Greg pointed out,

“PHARMAC takes excellent advantage of its market dominance, provided through an exemption from Part 2 of the NZ Commerce Act. The Agency employs aggressive monopsonistic  purchasing practices in negotiating contracts with international pharmaceutical companies.”

“In short PHARMAC is appreciated in New Zealand  as a world leader in meso-level rationing of subsidies on pharmaceuticals.  It provides for a good range of effective medicines to the community. It has done this consistently over 15 years and saved considerable amounts of taxpayer’s money  in doing so.

However, in PHARMAC’s second purpose of providing access to medicines for people whose needs are described as exceptional, the picture could not be more different. My research into the operation of PHARMAC’s ‘Exceptional Circumstances’ policy demonstrated  that PHARMAC does not closely align with high levels  of fairness to individual claimants, particularly sufferers of rare and orphan diseases […] it appears that PHARMAC does not provide subsidy equitably  for people with diseases requiring high cost medicines.”

Greg outlined how Ombudsman David McGee had assessed PHARMAC’s  policy that “supported the position that high and low cost medicines should be examined by the same decision-making criteria, and found that whilst it was lawful, was not reasonable“.

The Ombudsman stated that “… to attempt a specific recognition for rare diseases in the NPPA policy would significantly undermine the Pharmaceutical Schedule“.

Greg summed it up by stating  that “it would seem the two objectives cannot reside amicably in the same house“. He further stated,

“PHARMAC protects the inviolability of the CUA [cost utility analysis] process by not considering the personal circumstances of claimants despite the intention of the legislation to manage the claims of individuals in exceptional circumstances. Similarly, PHARMAC’s assessment of individual  claims takes no interest in the relative condition of claimants…”

He added,

“PHARMAC takes no regard of the needs of the least advantaged before the needs of the most advantaged and does not consider information from claimants about that which they have good reason to value in their lives.”

“PHARMAC also relies heavily  on opinions from it’s committees of  expert health economists. My research shows there was criticism of Quality Adjusted Life Years (QALY’s)  as the only economic assessment tool used in the efficiency study […] I am also aware that NZORD has complained that PHARMAC is choosey about which experts  it consults and has used experts that NZORD considers do not have international credentials to adjudicate on some claims by sufferers of rare and orphan diseases.

My research also demonstrated  the somewhat speculative nature of decision-making in that PHARMAC decision-making committees in the past have not recorded the reasons for decisions nor advised claimants under which criteria their applications have failed.”

Greg’s assessment of PHARMAC’s failings on this point  was explained that “underlying  this PHARMAC practice is a deep anxiety that, if claimants were provided with the reasons why their claims were denied, some would most certainly be challenged.

Greg then asked two questions,

“As a society do we believe that medical practitioners and economists are are qualified to make moral judgements about claimants and what they deserve?

Are medical practitioners and economists the right people to be putting  a price on what claimants have good reason to value in their lives?”

Greg pointed out the reasons why PHARMAC judged claims by individuals suffering rare and orphan diseases, calling threm all “excellent reasons“;

  • If PHARMAC accepted all claims, it would exceed it’s budget and fail it’s statutory duties,
  • PHARMAC had to resist unproven/untested therapies, especially so-called “alternative style health providers who cruelly offer desperate people ‘cures’ which are most often hopeless”,
  • PHARMAC faced pressure from pharmaceutical companies to list their own drugs on the Agency’s Pharmaceutical Schedule. These pressures had to be “contained”.
  • And PHARMAC had to demonstrate that it had a robust national-level “rationing”policy to maintain the confidence of Parliament, DHBs, and the public.

“In summary, PHARMAC celebrates the fact that it applies the same meso-level rationing  tools for micro-level decisions. In assessing the pharmaceutical  needs of sufferers of rare and orphan diseases, the tools are simply not fit for the purpose.”

We Need a Fairer System

Greg acknowledged the unfairness of expecting PHARMAC to manage the Pharmaceutical Schedule with a capped budget as well as having to consider expensive and essentially unaffordable claims for medicines. He said that “this situation had created the animosity and on-going frustration between sufferers of rare and orphan diseases and PHARMAC staff and Board“.

He also said it was “equally unfair of rare and orphan diseases to be denied medicines which will improve their life expectancy [simply] because they are being assessed against an economic metric which applies to a model based on 4 million people“.

Greg said that a fairer system had to be devised. One that ensured that PHARMAC was unencumbered in it’s primary role of nationwide rationing, involving the subsidisation of a wide range of pharmaceuticals for New Zealand. This was a role that PHARMAC did very well.

Greg then offered a solution;

“But we also need a micro-level rationaing system with a different set of rationing criteria more suited to the task of analysing claims of individuals and small groups of sufferers of rare and orphan diseases. The fund would be, let’s call it, the ‘Rare Diseases Funding Agency’ (RDFA). It would have  a Board appointed by the Minister of Health and administered by the Ministry of Health. The Fund should be regularly reviewed and reported to the Minister.

The RDFA will need to carefull consider both relative economic efficiency and locate the best relevant expert advice it can muster. It would make sense for PHARMAC to undertake the CUAs when required on behalf of the new Agency.  The decision making criteria will also need to develop a level of understanding the quotient of fairness and be aligned with community values  in support of micro-rationing…

[…]

… I am in no doubt that the RDFA will from time to time be required to make unpopular decisions. On such occasions the Agency will suffer the same level of criticism and unpopularity as has been visited on PHARMAC. However under such circumstances claimants seeking a review should be able to expect a fair hearing of their circumstances and be advised of the reasons for the decision made.

[…]

The Rare Diseases Fundaing Agency that I have described follows the international  precedents set by Australia, England and soon in Scotland.”

Greg concluded with this salient point,

“I doubt that there will be a day when the Rare Diseases Funding Agency would be able to fund individuals and small groups of people for every treatment available. Under our current funding system, this day will never come. However, the new agency will have fairness and community values among its founding principles. It may not [be] able to provide perfect fairness, but New Zealand would have a system which travels purposefully in that direction and sufferers of rare and orphan diseases would be better off than they are now.”

[Note: a full text of Greg’s presention can be found here: Funding Pharmaceutical treatment for Rare Diseases in New Zealand; we need a fairer way of doing things– Greg’s speech is highly relevant for our wider society as he touches upon issues relating to social equality; individual rights;  and a fairer distribution of resources. My report only briefly touches  on Greg’s main points; his full speech is rich in ideas and information. – Frank Macskasy]

At the conclusion of Greg’s address, which was warmly received by the audience, Wallace invited all speakers to take seats up-front and engage in a question and answer session;

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This was followed by guests from the four main political parties represented in Parliament; National, Labour, The Greens, and New Zealand First. (The Maori Party sent an apology along with a policy statement.)

There was to be a surprise policy announcement from one of the parties.

To be concluded at:  Opposition parties work together on “orphan drugs” (part wha)

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Copyright (c)  Notice

All images are freely available to be used, with following provisos,

* Use must be for non-commercial purposes.
* Where purpose of  use is  commercial, a donation to NZ Organisation for Rare Disorders is requested.
* At all times, images must be used only in context, and not to denigrate individuals or groups.
* Acknowledgement of source is requested.

Previous related blogposts

Priorities? (19 Oct 2011)

Terminal disease sufferer appeals to John Key (12 Nov 2012)

Terminal disease sufferer appeals to John Key – Update & more questions (28 Nov 2012)

Health Minister circumvents law to fulfill 2008 election bribe? (18 Dec 2012)

Johnny’s Report Card – National Standards Assessment – Compassion (9 Jan 2013)

“There’s always an issue of money but we can find money for the right projects” – John Key (20 Jan 2013)

“One should judge a society by how it looks after the sick and vulnerable” – part tahi (4 March 2013)

“One should judge a society by how it looks after the sick and vulnerable” – part rua (4 March 2013)

“One should judge a society by how it looks after the sick and vulnerable” – part toru (4 March 2013)

Additional

NZORD

UN Special Rapporteur on Health

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