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

10 August 2013 3 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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= fs =

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

8 August 2013 2 comments

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Continued from: Opposition parties work together on “orphan drugs” (part tahi)

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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.

Following on from Kris Gledhill, host Wallace Chapman – of Prime TV’s ‘Backbenchers‘ fame, introduced the next speaker; Matthew Smith;

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Matthew is a barrister at Wellington’s Thorndon Chambers, and practices in the area of civil and commercial litigation. His focus is on public laws and judicial reviews – something of particular relevance to NZORD’s members and supporters.

Matthew presented an overview of the Pharmaceutical Management Agency (PHARMAC) with explanations as to it’s guiding legislation; policies; and obligations.  His primary speech notes can be read here, and are worthwhile  accessing, if only to gain a deeper understanding how the Agency works (the speech notes are brief, only 5 pages, double-spaced typing).

He began with a “starting point” of  public law and the consideration for the judicial oath of office where anyone who becomes a judge of a Court “must do right for all manner of people“. He said this was relevant because that it was part of the decision-making process, and would be relevant in terms of international human rights obligations , domestic human rights obligations, and at an individual level for any funding decisions that PHARMAC makes.

General principles of law were also relevant to all  public-sector decision-making, “and that applies as much to PHARMAC as it does to any other  body“.

Matthew wanted to draw attention to  three main principles;

Firstly, that decisions have to be individual-specific and case-specific; that PHARMAC has to be consistent in decision-making, treating similar patients similarly, as well as recognising that there are points of difference that meant the dis-similar should be treated dis-similarly. Which was relevant, he said, to cost assessments in the context of PHARMAC’s funding decisions.

The third point was the human rights consideration and Matthew referred to Kris’s in-depth analysis of this point. He  confirmed Kris’s comments by stating,

“The relevance of human rights considerations is in least two dimensions in PHARMAC’s decision making. One is in the development of  any general policy  which applies and governs or informs the decision making process. And two, is in the individual level, the application of individual applications by individual applicants for funding, and their relevant human rights and how those rights impact upon the  decision that PHARMAC has to make.”

Matthew said that PHARMAC’s functions are set out in section 48 of the NZ Public Health and Disability Act, which firstly tasks the Agency with maintaining a Pharmaceutical Schedule, and the second to focus on the circumstances in which PHARMAC will make individual exceptions to the Schedule  with additional funding and grants.

PHARMAC’s policy to determine individual applications is governed by  their  Named Patient Pharmaceutical Assessment (NPPA) Policy. There are nine criteria by which they make their decisions. Whilst none of the nine criteria specifically referred to human rights considerations, Matthew pointed out that the ninth criteria referred to “other considerations“.

Matthew wasn’t certain if Pharmac considered human rights factors as part of  “other considerations“, but he said that they should under “human rights obligations“. He said that the general statute under which PHARMAC operated does mandate consideration for human rights factors.

Interestingly, Matthew pointed out that PHARMAC’s,

“…budget is notional, because PHARMAC itself does not pay the subsidies for pharmaceuticals. They are paid by the Ministry of Health, on behalf on the DHBs.”

Matthew repeated that general and broader law required PHARMAC’s decision-making for individual’s making applications,  to consider an  individual’s circumstances, and of the patients who would be beneficiaries of the drugs to be funded. He added that a practical consequence of that criteria was that PHARMAC could not use the price of a medicine as a reason to decline an application.

Matthew also pointed out that in analysing the cost of a particular drug, that cost had to be offset against any other costs otherwise spent by the health system for providing a service that otherwise would not be provided by PHARMAC. Costs, he said, had to be considered in a fairer, broader, more holistic way, taking into account offsetting costs, indirect as well as direct.

In terms of consistency, Matthew said that general consistency of treatment was identified as a principle of law and treating “like with like” flowed from principles of equity and equitable considerations. He added that often it was over-looked that consistency also meant identifying those who were in a different situation  and treating them differently. He used an example of  a population group with disimilarities to the rest of  the population, and that those disimilarities should be taken into account.

Taking differences into consideration maintained consistency. That had to be reflected in processes, as well as in end-decisions.

In answer to a question from the audience, which asked why applications from rare disease patients were still being turned down, Matthew replied, that the Act allowed for cost as one of three considerations.  He accepted that cost was relevant to PHARMAC.  Two other considerations were clinical needs and determinations, and health needs – the latter not defined in the Health Act.

He suggested that too much focus was currently being placed on cost, cost-basis,  and economic analysis, and that we had lost sight of the fact that we are dealing with people and individuals first and foremost. Mathew said,

“…As people born into the Human Family, so to speak, which is the starting point of all human rights obligations… those are being lost sight of, and those aren’t being given sufficient weight in the context of individual decisions,  and circumstances where, as I understand it, PHARMAC has decided that there is no specific earmarking in terms of the last year the $770 odd-million that was allocated for funding. There’s no specific earmarking for exceptional circumstances or rare diseases…”

Without specific “earmarking” of funds, it seems that those with rare disorders were destined to be sidelined by PHARMAC.

But, there was to be a glimmer of hope later.

Wallace then introduced Andrew Moore, associate professor of Philosophy at Otago University. His field and interest was in  ethics as they related to public policy. He has advised four Health ministers, from Labour’s Annette King to National’s Tony Ryall. He was a founding member and chairperson of the National Ethics Advisory Committee.

His advice has contributed to the national health policy, resource allocation, prioritisations, as well as contracting to PHARMAC;

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Andrew started with paying tribute to NZORD and it’s director, for an “ongoing resilient committment”  and respect for  the democratic process, to work toward their goals.

Andrew then defined his concept of ethics – which he tied to the seminar issues,

“I have a fairly basic idea about ethics. Ethics, according to me, is just to do with what matters, and how to live in the light of that.”

Andrew added, “that  the topic here is what matters in the allocation of public funds for medicines, devices, and the like“.

He said that what matters in this context is the people who need these treatments and who can benefit from them. Andrew acknowledged PHARMAC’s statutory role was  to deliver best health outcomes for available  funding. The process was driven by the idea of maximising the public health benefit, and because of  budgetary constraints, there was priority for the greatest  health benefit per dollar.

That meant others missing out and not gaining any public funds, or opting for private support such as friends; reliant on corporate largesse;  missing out altogether,

“Or whatever survival means are available.”

Andrew suggested “pushing at the margins” to achieve ends. He suggested pushing for the ideas of “severity of condition” or “severity of circumstances“; or lifetime disadvantage.

He said the the current “maximised benefits” idea was simply not enough to deliver outcomes for those who needed it. He preferred promotiong the idea of “need” and “severity of condition” as a means to focus on.  Andrew suggested keeping things as simple as possible. For some in PHARMAC, ethics was “too complicated”.

He referred to the UK’s citizen  jury process to arrive at good outcomes and ideas.

Any solution had to be “need weighted” benefit, especially for those in dire danger from disorders.

Despite some fearing the possibility of getting into an “ethical view” on this issue, Andrew reminded the audience that even the current system was built on an ethical view, even though it was a somewhat narrow view. It was impossible to avoid ethics in favour of the status quo, said Andrew,

“You can only choose some views over others. There was no hiding place in the status quo”.

Following on from Andrew Moore, Wallace introduced Dr Andrew Veale, a Respiratory and Sleep specialist and Clinical Director for a private Lung Function and Sleep laboratory at the NZ Respiratory and Sleep Institute in Auckland. Dr Veale is also a sleep specialist at Middlemore Hospital, and has diagnosed and treated Acid Maltase deficient (Pompe Disease) patients. He is deeply interested in clinical trials and physiological measurement;

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Dr Veale began,

“I’m involved because I fortuitously diagnosed a few patients with Acid Maltase deficiency, or Pompe Disease, and  they’ve allowed me to walk through their lives. In Freda’s case, for twenty years, as they cope with this disorder, which has had no cure. So it’s been an education for me and I hope of some benefit to them. But most of the time we just talk shop. Social things.”

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Freda (L) and Jenny (R)

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So began Dr Veale’s talk.

With the aid of coloured slides, Dr Veale launched into a full scale medical explanation of the causes of Acid Maltase deficiency, or Pompe Disease. He showed cross-sections of the human cell, and explained the simple deficiency that has wreaked so much harm and tragedy in people’s lives.

He began by stating that Enzyme Replacement Therapy (to treat Acid Maltase deficiency) was different from normal administration of drugs, as the Therapy used a much larger molecule. (Thank god for Fifth and Sixth Form General Science and Biology classes.)  Whilst normal drugs permeated through the whole body, he said, enzyme replacement had to be targetted to enter cells.

Dr Veale’s explanation of the complex processes was simplified for ease of comprehension. In fact, it was probably easier to take in than some of the legal matters that had been presented earlier.

After the science lesson preamble, Dr Veale added another complication into the mix; how to test treatments for rare diseases when the numbers of  patients are so small. As he put it,

“Patients with rare diseases will never have a randomised, double blind,  cross-over, trial while facing East…” (laughter) “These  patients are treated with observational treatments… which are not as good.”

He said there was a problem with randomised double-blind trials in that they disguised a sub-group who might benefit from the wider group.  Dr Veale added that Acid Maltase deficiency  involved trials that  lasted over years and reports could not expected any time soon. So there were inherent difficulties with the model of clinical trials.

Another problem, he said was the variability of tests. Dr Veale said test results depended on the precision of  test instruments. Test results, he said, also depended on how  a test subject was feeling on a given day and what kind of activities they had engaged in. He used Freda as an example saying that she might well fine on a Monday – but knackered on a Friday because she had been doing gardening that  morning. These were all factors that affected outcomes.

Dr Veale presented a slide with four curves to illustrate his point. He said the graphic was a “fantastic” example of the point he was getting across;

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The  sharp, pointy [red coloured] curve, he said offered a test outcome with a very good precision.  It’s got “tight confidence“; “we can trust it“; “it’s the truth“.

The green curve gaves the same result, but was less precise; “the scatter was wider“. “And it might be the truth“.

Dr Veale then used another chart to show how individual data points, from the same patient, would give differing results. One set of data points showed the patient improving – another set of data points other showed the patient deteriorating. But  it was the same patient and from the same set of data. But overall, it showed a more accurate picture of the state of the patient, “this is some real data”, Dr Veale said.

I was reminded of political polling. Individual polls could give a misleading result for political parties – but an overall picture presented a much more accurate result. (See: Polling Chart on The Dim Post blog)

Dr Veale said that with slow-changing diseases, the temptation was to  test infrequently because not much had changed. As a result, there would be misleading test results from data gained from infrequent  testing. Fewer data points would present an incomplete or misleading picture of the disease’s progression. The infrequency of measurement coupled to an imprecise test would yield poor results. The slower a  disease progresses, he said, the more data points were needed to create a more truthful picture. The same applied to an imprecise test – more measuring was required.

For example, Dr Veale sugggested a year’s worth of testing at one-weekly intervals. And then he would want a further year’s worth of follow-up testing of one-weekly measurements to detect any changes in previous data. That, he said, was using the patient as their own ‘control’, as  the best method of showing a subset of beneficiaries.

Dr Veale presented the final slide in his summation,
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Dr Veale made the strong point of having a separate  trial fund for experimental treatments for individuals  patients, with over-sight  by an independent Advisory Board. The purpose was to ensure outcome measures were  important to the individual patient concerned.

He said,

“I think we’ve got to get it right. These are very expensive drugs and it’s all very well to say  ‘well we shouldn’t worry about that’, but there is a [muffled] cost if we don’t do it correctly. I think there is a way forward here. When you make a decision to treat somebody with these sorts of disorders,  you’re not making a decision to spend $100,000 a year, you’re making a decision to spend five million over a life.

And I think there is an obligation on us to show that it’s of use.”

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

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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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= fs =

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

8 August 2013 4 comments

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

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NZ, Wellington, 1 August 2013 –  At a seminar in Wellington, Labour’s Health spokesperson, Annette King, announced her Party’s new policy to create a new fund for purchasing so-called “orphan drugs” – medicines – for rare diseases.

Labour’s new policy marks a turning point in the critical problem of “orphan drugs” which are not funded by PHARMAC, but which are a matter of life and death for people suffering rare diseases.

The seminar – held by NZORD, the New Zealand Organisation for Rare Disorders – took place at Wellington’s down-town Amora Hotel, and was opened by it’s executive director,  John Forman;

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TV personality, Wallace Chapman, hosted the seminar, introducing each guest speaker and keeping a tight reign during question time (he’d make a great Speaker of the House);

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Representatives from the Green Party, Labour, NZ First, and National attended.

Main speakers included,

  • Dr Christine Forster, GP
  • Dr Alison Davies, Pharmaeconomics
  • Kris Gledhill, lawyer, Director of NZ Centre for Human Rights Law, Policy and Practice
  • Matthew Smith, lawyer
  • Andrew Moore, Associate Professor of Philosophy at the University of Otago
  • Andrew Veale, Respiratory & Sleep Specialist
  • Dr Greg Coyle, social policy practitioner
  • Daniel Webby, patient & patient advocate
  • Dr Andrew Marshall, Paediatrician, Clinuical Leader Child Health in Wellington Hospital
  • John Forman, executive director of NZORD

First speaker, was GP, Dr Christine Forster. Dr Forster has been a GP for thirty years; held appointments as Chairperson of the Abortion Supervisory Committee, plus involved in committees overseeing assisted reproductive procedures. She briefly participated in the Auckland Health and Disability Regional Ethics Committee;

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Dr Forster began by saying that her role was also about general wellbeing; mental health; and advocating for access to services and resources.

She read out the patient’s Code of Practice,

Every consumer has the right to have services provided in a manner consistent with his or her needs.

Every consumer has the right to have services provided in a manner that minimises the potential harm to, and optimises the quality of life…

That is our guiding light“, said Dr Forster,”it is a patient-centered focus.”

Dr Forster spoke of PHARMAC’s successes – but added it could do better,

“In general practice we have contact with the decisions that PHARMAC make every day. We are managing the pharmaceutical changes for our patients who have chronic diseases… Managing the change for them is not always as straightforward as I think PHARMAC think. Many are suspicious and wary of change.”

“It’s a worthwhile process because it’s successful in providing routine medications for New Zealanders at a much lower cost than other Western countries. And for most part this process has no harm [or]  minimal harm…”

She pointed out,

“So the success is the savings for the pharmaceutical budget so more drugs can be funded and improved access to newer treatments.The unexpected bonus for us is that it has removed the drug reps from our rooms and offices.. So huge benefits and minimal harm.”

Dr Forster addressed the perceived high cost factor of orphan drugs,

“The approach to funding drugs, high cost pharmaceuticals, and drugs for rare disorders is different. There is harm, because essentially what we’re doing is witholding proven treatments. We’re making drugs unavailable. My question is, really, are we making decisions about pharmaceuticals in isolation to the rest of healthcare?”

Dr Forster pointed out that there are other examples of expensive healthcare where there cost-benefit analysis is not considered prior to treatment – so why are pharmaceuticals held in a different light?

“The argument’s often  about not funding these drugs… often the view is if they do that, the money will come from someone else; that someone else will have to suffer. But this happens all the time, all the time we are treating a small number of people at huge cost… that’s just the normal treatment.”

Dr Forster said she looks at the outcomes of treatment, not just in a clinical approach with drugs. She said that was a very narrow outcome and in general practice she looked for a much broader sense, of a good life,

“A sense of not being abandoned by society”

Dr Forster concluded by saying,

At the end of the end of the day, I think, it comes down to what kind of society do we want to live in.And it’s one about making decisions about people’s health and wellbeing is not on cost alone.”

After questions and answers,  Wallace Chapman also related his own personal circumstances of carrying a rare disorder – Gauche’s Disease –  and the extraordinary steps that his mother took to ensure he received adequate, life-enhancing treatment. He was told by the Dundedin specialist who diagnosed his condition that “there’s nobody else in Otago” who had  the condition.

His mother  “became a star“, said Wallace. His  mother began phoning MPs and ministers, and went to Jenny Shipley, who was then  MP for Ashburton/Rakaia, and demanded that he receive the necessary treatment to save his life.

He expressed his appreciation to then-Wigram MP, and Alliance leader, Jim Anderton, who “championed the cause” to  get Wallace and other Gaucher’s sufferers the necessary drugs to save their lives. Wallace said his dream was that other people like  Freda could also acquire the drugs they needed.

Wallace wondered what might happen if the government took the money away from funding the Waihopai Spybase and spent it on healthcare. He suggested it might be a better world to live in – a comment well received by the audience.

Wallace added that GPs like Dr Forster were the real heroes in our community – especially those that take an interest in such complex, social  issues.

Wallace then introduced Dr Alison Davies to the audience;

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Dr Davies has a diploma in Pharmacy, diploma in Hospital Pharmacy, and Masters in Medical Science (epidemiology). She has practiced as a pharmacist; clinical researcher for 17 years; and worked in pharmaeconomics for a pharmaceutical company. She has taught post-graduate students at Otago University and is a member of Breast Cancer Aotearoa Coalition. She has represented this patient group voluntarily,  gain better access to medicines.

Dr Davies began  with the  criteria used to make decisions in healthcare – particular ‘tools’ such as  “cost effectiveness analysis and cost utility analysis.

Dr Davies compared different systems used in Australia (PBS); the UK (NICE), and PHARMAC in New Zealand; all three take “cost effectiveness” into consideration as a criteria;

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Criteria for decision making

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Dr Davies pointed to  “...a real tension between making decisions about a population’s health and making decisions about an individual’s health.”

We have a choice about which costs to include...”  Dr Davies referred to a Definition of Societal Perspective,

‘Includes everyone affected by the intervention and counts all significant health outcomes and costs that flow from it, regardless of who experiences the outcomes or costs’
 – which means that everyone in society, everybody’s costs and outcomes which are affected by this intervention  are included. Now that’s not how… PHARMAC does it’s analyses. It chooses a perspective of the healthcare system, so only includes the costs that accrue to the healthcare system plus patient contribution to the healthcare, co-payments, that sort of thing. So there’s no inclusion of loss of productivity, personal costs that are outside of health, etc. So there’s no consideration for you getting back to work; the time-costs associated of your caring for a sick or disabled person, your leisure time…”

Dr Davies referred to a person’s  “quality of life”, using the  World Health Organisation definition as  “physical, social and emotional aspects of a patient’s wellbeing that are relevant and important to the individual“.

Dr Davies discussed cost-effective thresholds in the UK and Australia  and asked,

“Does PHARMAC have a cost-effectness threshold?

Pharmac maintain they have no cost-effectiveness threshold for funding of medicines.”

However, she questioned that assertion  and noted a reference to a de facto  threshold in a 2012 NZ Medical Journal.

This impacted on what treatments could or would not be ultimately funded and did not take into account needs such as rare diseases and orphan drugs, she said.

Dr Davies said that breast cancer had 50 types, and the “commoness” of this disease could actually be made up of several rare variants. So we could all have a “rare disease”.

Dr Davies said that “orphan drugs” have a high cost but there are often no alternatives and are often  lifesaving,

“That’s where the rule of rescue” comes in.”

Dr Davies compared sea rescues that often cost over a million dollars and we “don’t blink a eye and we all think that’s a great thing to do“. She called it a human impulse or imperative to save one individual.

The rule of rescue, Dr Davies maintained, could equally be applied to saving lives by funding rare medicines.

We need to have a fair decision-making process“, she said,

“Health economists don’t yet  rule the world, thank god”.

The next speaker was Kris Gledhill, a barrister who worked in London for two decades, working on various human rights cases, mostly for people detained.  He lectures at the Auckland University Law School, which includes teaching human rights law. Since January 2012,  Kris was the inaugual director of the NZ Centre, for Human Rights Law, Policy, and Practice;

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Kris opened by saying that his approach was through a human rights framework, and launched with this empowering statement,

“The reason why  it’s important to talk about rights in this context, I think,  is that,  if it’s a right, the grey men at  the Treasury, in their grey suits, and grey socks and grey underpants,can’t say ‘no’. Because if it’s a right, then it’s something to which you’re entitled  and which is enforceable.”

Kris said that were were a number of Treaties and a UN Human Rights Council, whose role it was promulgate our rights, including the right to health.  He referred to the rights which all New Zealanders have under treaties such as the UN Universal Declaration of Human Rights (1948); the International Covenant on Civil and Political Rights (1966); and the International Covenant on Economic Social and Cultural Rights (1966).

Kris said that both Covenants were signed in 1978 – when conservative Robert Muldoon was Prime Minister of New Zealand. He said Muldoon was no “leftie”.

Kris specifically pointed to the Convention on the Rights of  Persons  with Disabilities (2006),  and said it had “an awful lot  power” because of it’s potential as it had no definition of disabilities. He gave the preamble to the Convention,

“Recognizing that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others…”

Kris said that the definition of a disability was wide enough that it could cover those with rare disorder, if it interfered with their ability to participate fully and effectively in society.

He said it was a Convention to be made use of.

Kris also said that once a country like New Zealand signed up to an international Treaty (such as those mentioned above) then there was an expectation that domestic law, policy, and practice,  would be amended to reflect international human rights standards.

He said that where issues such as healthcare were involved, and resourcing was a question, that signatory States were obliged to use “maximum of available  resources” that were available to a particular nation, to give effect to the conventions. “It was not a free choice” – we had an obligation, Kris said.

Kris said that New Zealand’s Bill of Rights Act  and the 1993 Human Rights Act,  gave effect to New Zealand’s international human rights obligations.

Therefore, Kris said, international law was not separate from New Zealand law, but a part of it. He said this was recognised both by Parliament that made laws and the judiciary that interpreted those laws.

He said that of particular relevance was the 1948 Universal Declaration of Human Rights, which stated everyone had a right to a standard of living, adequate to the health and wellbeing for himself and his family,  including medical care and disability. That, he said, was what people believed we were entitled to as far back as 1948. The same Declaration reaffirmed our Right to Life, including extensions to life.

This included medical care in times of emergencies such as pandemics; infant mortality; and disorders that reduce life expectancy. He said this meant a right to live, not just a right to life.

The same Declaration, Kris said,  reaffirmed the right not to be subjected to inhuman or degrading treatment. He said that if the consequences of a  disorder are inhuman or degrading, then you have a right to have something done about it.

Most importantly, we have a right not to be discriminated against on the grounds of status. “Status” he said, included “anything of a disabling feature“. The right not be be discriminated against meant not to be treated differently in the light of your status.

Kris said that New Zealand had an obligation to ensure the highest possible standard of health. He pointed to the International Covenant on Economic Social and Cultural Rights which strated that citizens of  signatory states (ie; New Zealand),

” recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”

and,

“the steps to be taken by the States Parties to the present Covenant  to achieve the the full realisation of this right shall include those necessary  for: … (d) the creation of conditions  which would assure to all medical service  and medical attention in the event of sickness”

He repeated that this was a right, and not a choice by the government. He stressed the point that, that under Article 15, “everyone” had the right “to enjoy the benefits of scientific progress and it’s  applications.”

Therefore the grey men in the Treasury can’t say ‘no’.” The resources-based argument, Kris explained, was designed for developing nations and not rich nations like New Zealand.

Kris said that it’s “grass roots” organisations – and their mothers (which elicited quiet laughter) – that have to make use of these rights. He said we need to raise these international obligations in any legal challenges undertaken.

One such means for a legal challenge was to lay a complaint with the UN Special Rapporteur on Health. The Special Rapporteur, he explained, receives complaints from individuals, or groups in society, who have been affected by a denial of the right to health, or componants of health.

Only one complaint has ever been made from New Zealand to the Special Rapporteur, he said, and this facility could be better used by those who feel discriminated against.

Kris encouraged those present to use the international rights he had outlined because otherwise, “if you don’t use them, you actually don’t have them“.

Wallace then opened the floor and asked for questions.

This blogger asked Kris if the international treaties he had outlined have the same weight as free trade agreements, where member states can take disputes to legal tribunals for judgement?

Kris replied,

“Yes, they’re international obligations;  they’re the same as any international  obligations including the free trade international obligations. And the point is that those free trade obligations, the treaties that we’re signing up to there are all signed up to in the context that there is an existing, long standing human rights framework. So the free trade agreements do not overtake the international human rights framework. They exist in the context of the existing and enforceable human rights framework.”

At that moment, I thought of the other forms of discrimination that National was engaging in – such as punitive new policies against welfare beneficiaries. Could forcing beneficiaries to undertake drug tests or use contraception be a form  of discrimination that could be litigated at an international disputes tribunal such as the UN Special Rapporteur on Health?

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

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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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21 May – Public meeting: TVNZ7 gets the big tick!

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21 May – Public meeting: TVNZ7 gets the big tick!

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400+ People pack Wesley Church Hall tonight!

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Frank Macskasy Blog Frankly Speaking  Save TVNZ7

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A chilly Monday night in downtown Wellington, and people were steadily filing in, to fill  a reasonably sized hall in Taranaki Street’s Wesley Church Hall,

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The Goodnight Kiwi was on hand to greet people, as they filed into the hall,

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Within another half hour, and the hall was full, with people standing around the walls, in the doorway, and out into the foyer.

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The crowd numbered 400+ and seemed to represent a wide spectrum  middle  New Zealand, young and old,

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Completing a panormaic view of the packed hall, which kept filling even as the guest speakers were addressing the audience,

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Frank Macskasy Blog Frankly Speaking  Save TVNZ7

Note: From this point onward, a fault in my camera results in a degraded image-quality.

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Soon after 7pm,  Wellington Central MP and deputy leader of the Labour Party, Grant Robertson opened the meeting;  welcomed the audience; and introduced the guest speakers; moderator, Wallace Chapman (broadcaster); Clare Curran (Labour spokesperson on Broadcasting); Sue Kedgley (ex Green MP);  Dr Peter Thompson  (Victoria University, Senior Lecturer in Media Studies ); and Tom Frewen  (Journalist & Media Commentator),

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Wallace Chapman is better known in his role as host for TVNZ7’s popular “Backbenches” – though Robertson was at pains to point out to the audience that Chapman was present in a personal capacity only, and not as a representative for TVNZ7 or any other body.

Wallace Chapman welcomed the audience and commented that no public service TV channel was immune from political interfence, whether the BBC and Radio New Zealand.  He said that  TVNZ7 and its’ supporters were often dismissed  by critics as supporting “minority viewing”. Chapman said that 1.4 million viewers per month was not minority viewing, and quoted Noam Chomsky regarding minorities.

Chapman then read out a selection of letters and emails from people who supported TVNZ7. He quoted one young viewer who said,

I don’t feel left out of society with TVNZ7. I feel included.”

Chapman then introduced Labour’s spokesperson on Broadcasting, Clare Curran.

Clare Curran

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Ms Curran began by asking the audience,

Who remembers ‘Goodnight Kiwi’?”

A sea of arms shot up – probably 99% of the audience raised their arms.

Ms Curran said that ‘Goodnight Kiwi’ was out in the foyer (see photo above) and the costume was the same that had been used by TV2 in it’s public promotion of itself.

She then asked,

Who remembers Fred Dagg?”

Perhaps not as many hands went up this time, but still the vast majority indicated that they knew the name.

Ms Curran explained that the actor who played the popular ‘Fred Dagg’ character, John Clarke, was a well -known comedian and satirist on Australian TV. Clarke did short, satirical skits each evening on Australia’s public channel, lampooning some aspect of politics in Australian society.

She said,

We need ‘Backbenches’ to take the piss out of politicians.”

Curran said that ‘Backbenches’ was the only show on television that took a light-hearted, often satirical view of politicansm and this would be lost when TVNZ7 was closed down. She added that “we have already lost TVNZ6 and government was about to lose TVNZ7“.

She reminded the audience that Australia’s government invested $912 million on their public service ABC and SBS channels.

By comparison, TVNZ7 cost New Zealand only $16 million.

Ms Curran  then asked the audience,

Remember what happened when they threatened to take the bird call off Radio New Zealand?

She said that public outrage had stopped that from happening and we needed the same to happen to stop politicians from pulling the plug on TVNZ7.  Ms Curran added that we needed a proper debate on public broadcasting in this country. Curran said that it was government that was killing TVNZ7, just as it had frozen all funding for Radio NZ and had not increased its’ budget for the last three years.

Ms Curran added that this was the same government that had appointed National Party functionary, Stephen McElrea, to NZ on Air’s Board of Directors. McElrea is John Key’s electorate secretary. She said NZ on Air was now funding commercial tv projects such as “The GC”, and added,

Labour believes that public TV is essential and it must be resurrected if TVNZ7 is killed offWhen we get  a Labour-led government soon, let’s put it in[public TV] place. Let’s make a decision now that we do value public TV.   “

Ms Curran said that all other Opposition parties were supporting this issue and not just the Labour Party. She said,

We think Peter Dunne supports public TV.

Today Grey Power issued a media release supporting retention of TVNZ7 and  were appalled at it’s [impending] closure. “

Ms Curran then read out a few emails she had received, supporting TVNZ7,

It was inexpensive. “

In its’ absence, we’ll just get more junkfood telly. “

TVNZ7 is an incubator of ideas.

Ms Curran then concluded her talk with a passionate plea,

This is an opprtunity  for us to get mad and get involved. We must fight to keep it. And if it’s killed off, we must bring it back. “

Sue Kedgley

Wallace Chapman then introduced the next speaker, ex-Green MP, Sue Kedgely,

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Ms Kedgley went straight for the government’s “jugular”, stating that it was fatuous that National can’t find $16 million to fund TVNZ7 when other countries can afford public TV.  She said that even Russia  could afford public TV.

Ms Kedgeley suggested that if government was so cash-strapped that there were options to raise money to fund TVNZ7. She suggested,

  • Funding TVNZ7 from a levy on Sky TV. Sky TV already pays to have TVNZ channels Kidzone and Heartland  on their channels.
  • Sell off spare spectrum and use a $200 million windfall for public TV.

She said there were many other options but the reason National wasn’t exploring them was,

National doesn’t believe in public TV because it’s outside the ‘market’. “

Ms Kedgeley was adamant that it was important that some broadcasters,  “were not beholding to corporations and could ask the hard questions.”

She suggested that National was keen to get rid of TVNZ7 because of a perceived “left wing perspective”, and said,

We have the most de-regulated media in the world.  There’s no regulation for local content. No controls on cross-ownership. No rules around pay-TV at all.

Ms Kedgeley said that as corporations were buying up our print and electronic media, that there were fewer and fewer independent sources of news other than the internet.  There was nothing to stop Rupert Murdoch from buying other TV channels in this country and he could buy TVNZ if the government decided to  sell it if they’re re-elected in 2014.

She said there would be less and less current affairs on TV if TVNZ7 was closed down. Ms Kedgeley referred to current affairs programmes on TV1 and TV3 being relegated to Sunday mornings and contrasted that with current affairs shows broadcast on TVNZ7 during prime-time .

Ms Kedgeley added that if we lose public TV, “our children will grow up learning more about Los Angeles than our own communities“.  She decried the situation that it seemed that TVNZ’s “main growth area was making TV channels  for Sky’s pay-tv business“.

She told the audience that the previous broadcasting minister, Jonathan Coleman, had once said,

New Zealanders don’t give a toss about public service TV. “

Ms Kedgeley replied, “How wrong he is!

So what can we do? ” Ms Kedgeley asked,

We can mobilise to support TVNZ7!

We can support Clare’s  Private Member’s Bill promoting public TV!

But we may have to wait for the next Labour-led government to set up a new public TV. I think this is the beginning of grass-roots public support for public TV. “

As Ms Kedgeley spoke, this blogger noticed more and more people entering the hall. There was standing room only,

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Tom Frewen

Next to speak was radio journalist and commentator, Tom Frewen. Mr Frewen has hosted the excellent  ‘Focus on Politics‘ on Radio NZ and is possibly one of the finest investigative journalists and commentators we have in this country.

Mr Frewen started of with a challenging statement to the audience,

I come not to save TVNZ7, I come to bury it.”

He added that if this meeting was being held in Invercargill or Christchurch, tv cameras from local television stations would be present to report the event. Mr Frewen said that a lack of television cameras was noticeable because Wellington had no regional public TV, and other networks were not interested in reporting this event.

He said that he was under no illusion that TVNZ7  would not be saved by this government, or by TVNZ,

We can’t have it unless politicians want to spend money on it. Labour and the Greens will have to break with the idea that TVNZ will support public TV. It will not.

On a lighter note, Mr Frewen that he did not  like calling it TVNZ7,

It should be ‘One’.”

There was clapping from the audience at that simple statement.

Mr Frewen remarked on how bad our commercialised TV had become in the last 20 years. He said that it is up to politicians to sort this out,

“We can’t have public meetings every month I’m mad as hell, but there’s no point in being angry. I want you [pointing at politicians seated at guests table] to fix it“.

He also called for an investigation by the Auditor-General regarding NZ on Air’s funding for “The GC”.  Mr Frewen wanted to know why funding was going to a Dutch production company. He suspected that NZ on Air had been “taken for a ride“.

Mr Frewen said he wanted a proper public discussion on this issue and wanted a framework of public TV presented to the public,  to determine if people liked a proposal.

His final comment was short and succinct,

And that’s it.”

The next speaker to be introduced was Dr Peter Thompson, a Senior Lecturer in Media Studies at Victoria University,

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Dr Peter Thompson

Dr Thompson accompanied his talk with  a power-point presentation that summarised his comments point-by-point.

He began by stating that it was a like wishing for a ‘digital tooth fairy’ to assume that once TVNZ7 is “buried”, then public-interest  programmes would be broadcast elsewhere.  He cited the ghettoisation of current affairs programmes (‘Q+A‘,’ Think Tank ‘, ‘The Nation‘, etc) on Sunday mornings, instead of prime-time viewing. He said that the lack of funding for TVNZ7 was a purely political decision by National, and nothing else.

Dr Thompson said that despite  appearances, government  does not “speak with one voice”. He said that government departments have different priorities and do not always want the same thing.  He said Cabinet had looked at TVNZ7  but that it did not meet their criteria to be “fiscally neutral”, so handed it back to TVNZ.

Dr Thompson said that eventually we could have a situation where people could have any channel, as long as it was Sky. He added,

But viewers can only choose what they watch if it’s available.

He added that free-to-air commercial TV isn’t free,

You pay for it through the ads you see on TV. The cost of those ads is part of the stuff you buy.”

Dr Thompson then broke his talk down into three broad areas,

1. Costs

He said that the cost of Sky for subscribers was approximately $1 per day.

He contrasted that with the cost of TVNZ7 to taxpayers – 1 cent per day.

Every household could pay $10 per year to fund and save TVNZ7.

2. Re-reregulate Sky and pay-TV.

3. A levy on Pay TV.

Dr Thompson offered several funding models that would pay for TVNZ7.  These ranged from a small levy of pay TV, telcos, and internet providers, to other options such as subscriptions to public TV. He said subscriptions might work for public TV, but not public radio.

He suggested another option of returning to a form of TV licensing.

Dr Thompson said that it was a right of citizens in society to have access to a non-commercial, public TV.  He added that levying Sky TV would be putting some of their profits back to the public. Dr Thompson called it a “polluter pays principle”, to which their was laughter  from the audience.

Dr Thompson revealed that he was both optimistic and pessimistic in his feelings about TVNZ7.

He said that he believed TVNZ7 will be canned by the government.

But he also believed that, in the end,  something bigger in public TV would arise. He was confident that the public would reclaim their right to have public TV.

Dr Thompson concluded his talk by offering copies of his speech to those who were interested. He received good applause from the audience.

Audience Participation

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Wallace Chapman then welcomed questions from the audience and posed the first question himself to Tom Frewen,

NZ on Air says they are in the ‘diversity game’. They say they have ‘something for everyone’. What do you say to that?

Tom Frewen replied that it’s not always about diversity. He said it’s about “who the programmes are made for“.  He said it’s about whether the programmes are made for the viewer – or for advertisers.

He raised the example of the recent ‘Strongman‘ mine-disaster documentary, that had been shown on TV3. Mr Frewen said it was a fine documentary,and had obvious relevance to the Pike River mine disaster. He said the closing commentary, shown immediately before the end-credits, made it obvious that the doco referred to current mining issues.

He then questioned, ” but where was the panel discussion afterwards? The government got off very lightly “.

Mr Frewen said that NZ on Air had been taken for a ride on “The GC”. The producers had noticed that there was “spare money sloshing around” and had presented “The GC” as a documentary for NZ on Air funding.  He said the final product “was for advertisers, not for us“.  He said programmes had to be made for the viewer, and not for advertisers, otherwise it was a commercial exercise and not public  TV.

A question from the audience;  “There were no votes in this. How do we get the public onboard?

Clare  Curran said she had a couple of suggestions.

Firstly, she said, we needed a public discussion on this. It won’t happen overnight, she said, but we needed a public conversation on this issue. She asked people to talk to friends, family, and workmates, to make this an issue.

Secondly, she invited people to vote for Labour, so that a Labour-led government could re-introduce a stronger public TV system, with guaranteed, ring-fenced funding and at arms-length from political interference.

Another question from the audience; “How do they calculate ratings for TVNZ7, especially for arts programmes?

One of the panellists replied that Nielson collects data from 500 households, using an electronic box mounted on TV sets. The box collects information on when a TV is switch on and what channels and programmes are being watched.

However, the box does not monitor actual watching by the viewer, and does not record if the viewer stops watching to go make a cup of tea during the ad breaks, or if the viewer has left the room, or fallen asleep on the couch.

Another question; “How are the 500 households chosen? ”

Answer; Households were chosen by their demographics, to ‘roughly represent’ the composition of New Zealand society. However, that demographics would not take into account small minorities,

You won’t see Armenian programming on television “, one of the panellists remarked.

Another question; “Referencing the Leveson Inquiry [investigating Murdoch’s corporate activities and corruption in the UK], should we be having a Royal Commission of Inquiry into media ownership in New Zealand ?”

Ms Curran answered the question by saying,

  1. We needed a public debate on media ownership in this country.
  2. The Commerce Commission was  engaged in an investigation into media contracts and content.

Next question came from Tom Frewen, and pointedly asked Wallace Chapman,

Why do you think there is no discission or reporting of this on other television networks?

Mr Chapman relied that aside from ‘Media7‘ [media commentary programme on TVNZ7] broaching the subject, no other television channel wanted to be seen referencing this issue. He said it was not an issue that benefitted coverage by other television stations.

Dr Thompson asked the audience a question of his own; “If public TV was administered by a foundation, what should it look like?  There were considerable infrastructure issues to work out with a fully independent public TV broadcaster, if it was to be separate from TVNZ.  What sort of public TV do we want? ”

One audience member offered a suggestion that an independent  trust could be modelled on the charitable trust  that owned the ‘Guardian‘ newspaper in the UK. He said it was important to remove TVNZ7 out of the hands of politicians.

Another audience member said that a charitable trust could be funded by the Lotteries Commission, and agreed that it was important to keep public TV out of the hands of politicians.

Another audience member suggested a subscription-style funding model, such as the PBS Network in the United States.

Dr Thompson replied that there were problems with that system in terms of ‘economies of scale’. New Zealand needed 270 million people to make a fully-funded subscription model work. There were simply not enough people in this country to make a voluntary subscription system work.

Tom Frewen added that a subscription model was  another form of pay-TV. It would work only if there was no other available alternative model. He agreed with Dr Thompson that the population was too small to make it work properly.

Sue Kedgeley said she was not in favour of subscriptions either and would rather see at least one commercial-free, free-to-air TV channel.

Ms Curran said that NZ on Air needs to be looked at to see how they are spending their [taxpayers] money. She added,

TVNZ7 should have been growing, so our children do not grow up with American accents. We need to have public TV  independent of government, and funding ring-fenced. Labour is committed to public TV.”

One member of the audience stood, and was obviously passionate – if somewhat misguided in his criticisms – when he seemed to attack the politicians on the panel, demanding to know, over and over again,

What are you doing about it?

Ms Curran attempted to placate the obviously agitated man, and Grant Robertson stepped in to explain that the Opposition were the opposition because the public had not voted for opposition parties in sufficient numbers. He said that if the public wanted public TV, they have to support it at the ballot box,

Sue Kedgeley added that the public has not had a passionate debate on the issue, and that we needed a group to fight for public TV, much like ‘Greenpeace’ fought on behalf of the environment. “We need a Greenpeace-style body campaigning passionately for public TV and to carry it through “, she said.

Mr Chapman agreed that there was considerable public frustration on this issue.

This blogger then had an opportunity to address the audience and panel,

I’ve no doubt that TVNZ7 will not be saved by this government. Unless 50,000 people take to the streets, National’s record of listening to the public is not great.

I suggest two ways that a future public TV channel could be kept out of politicians hands, because that, to me, is the greatest threat.

Firstly,  funding should be independent. I suggest a body such as the Remuneration Authority which decides the pay and conditions of politicians and which is independent of their control. Such an independent body could be legislated to fund public TV and Radio NZ, and make funding  automatically inflation adjusted. That takes control awqay from politicians.

Secondly, we need to use the power of contracts, which the New Right use to good effect,  to bind governments to maintain public TV. A contract could be for a term of 7 years which would be two parliamentary terms plus one year. That should take it well out of the hands of  any National government.”

The next member of the audience asked how many peple in the audience had Sky TV, and suggested that Sky customers suspend their subscriptions for one month, as protest against the demise of TVNZ7.

Another member of the public demanded to know, “Can we get Dr Thompson on TV?

Wallace Chapman replied,

I don’t know how we can do that. “

Dr Thompson added that his appearance on TV [to speak on behalf on TVNZ7] would be unlikely,

State TV is to shy of upsetting government.

He said that Jim Blackman, who ran ‘Stratos TV‘ until earlier this year, tried to link up with TVNZ7, and there were some talks on the issue, but nothing came of it.  He suggested that people should get in touch with Mr Blackman and support him.

Grant Robertson then stood and said that he was promising to commit to forming a Campaign for Public Broadcasting  and would work through the Save TVNZ7 website to keep people informed on progress.

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He seemed determined that this would happen, and suggested that members of the audience should volunteer to participate.

Mr Robertson thanked the audience for turning up on a chilly Monday night, and thanked Wallace Chapman, for flying down from Auckland to attend and host this public meeting.

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Grant Robertson also paid tribute to Wallace Chapman for his role in fronting ‘Backbenches’, and for making politics fun for viewers to watch.

There was a loud, enthusiastic round of applause from the audience, and the meeting concluded.

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Postscript

This blogger met the blogger from  ‘Kumara Republic‘, and we chatted about our respective bloggings.

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Copyright (c)  Notice

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

  1. Use must be for non-commercial purposes.
  2. Where purpose of  use is  commercial, a donation to Russell School Breakfast Club is requested.
  3. For non-commercial use, images may be used only in context, and not to denigrate individuals.
  4. Acknowledgement of source is requested.

Previous Blogposts

NZ on Air funding soft-core porn garbage? Since when? Since now!!

Fear and loathing in the Fascist State of New Zealand

Fear and loathing in the Fascist State of New Zealand – Part Deux

Fear and loathing in the Fascist State of New Zealand – Part Trois

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