Johnny’s Report Card – National Standards Assessment – Compassion

To Whom It May Concern; the following Report Card detail’s Johnny’s achievements over the last four years.

The following contrasts compare four years, ranging from the end of 2008 to the end of this year, 2012.

Whilst it is acknowledged that the Global Financial Crisis impacted harshly on our society and economy, it is also fair to say that National has had the benefits of starting out with a sound economy (surpluses, low unemployment, etc)  in 2008 and four years in office to make good on it’s election promises.

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Compassion

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The measure of compassion expressed by a government is the one thing that separates a government Of the People – to regimes  that encompass the worst forms of self-interest; autocracy; barbarism; and corruption.

Of all aspects of National’s performance, compassion is one that has no measurement; no means by which to compare performance from one year to the next; or from one government to the other.

However, there are three issues relating to National’s performance and John Key’s leadership, that give an overall impression of this government’s capacity for compassion.

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Pompe Disease sufferers

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I first wrote about seven people – all of whom were afflicted with Pompe Disease – in October 2011. (See:  Priorities?)

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Full story

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As I wrote then,

“It seems that this government can spend millions on rugby, party zones, luxury limousines, ministerial travel and other perks – but spending money to save the lives of our fellow New Zealanders is “unaffordable” ?

Well, at least this illustrates the priorities of this government like nothing else does. It is obvious what is more important to John Key and his colleagues in the National Party.

What makes this tragedy even more ghastly is that in 2008, John Key campaigned on behalf of  women suffering from breast cancer for Pharmac to fully  fund herceptin. Pharmac at that time had decided to fund only a nine week course – whilst campaigners were demanding a full 12 month period of funding. (see: Herceptin: What’s it going to take? )

Perhaps the difference between Mr Hill’s case, suffering from Pompe’s disease, is that 2008 was an election year and National was campaigning hard against an incumbent Labour government, led by an experienced, politically savy,  and fairly popular  prime minister.

National of course, won the 2008 election and Key “made good” on his election promise to force Pharmac to extend funding for herceptin (see:  Key: Herceptin funding proudest achievement).”

An email to Health Minister Tony Ryall, on 22 October 2011, yielded no results.

On 12 June 2012, Allyson Locke – another Pompe Disease sufferer – went public with her story,

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Full story

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In November 2012, Allyson wrote directly to John Key, via his Facebook account,

Dear Mr Key
     
I have written to you several times over the past 2 years regarding people with Pompe Disease not being able to get treatment. Pompe Disease is a rare (7 people in NZ have it) and fatal disease. There is a medication available in NZ which will halt the disease and in most cases give some improvement. This is an enormous positive for a fatal disease. The medication has been proven to work and there are published medical papers regarding this. The medication is expensive, but there are medications funded in NZ which are more expensive, and less proven.

My question to you Mr Key is, why do you continue to ignore the plight of Kiwis who suffer from Pompe disease, letting us die from slow and painful deaths at young ages. The youngest person in NZ who has this disease is only 20 years old. She has been declined for treatment. Another one of our members has been declined 4 times, FOUR TIMES! Nearly 60 other countries world wide fund this medication.

To be honest, your treatment of those of us with Pompe Disease is nothing short of ignorant and criminal. It’s about time you stood up and answered to us. You’re OUR Prime Minister, let’s hear what YOU have to say about it. We are sick of being ignored by you and your PHARMAC crew. If it was a member of your family i bet the medication would be funded asap. But because we are nameless faces, you don’t care. WE are KIWIS and we NEED treatment! If we had cancer we would get treatment! We wouldn’t have to beg and plead for our lives.

But I’m not too proud to beg. I’m dying, and i need treatment. What will you do for us? Please answer me.

Sincerely
Allyson Lock

She received no reply. Not even the courtesy of an acknowledgement.

Thereafter, I wrote directly to John Key as well (see:  Terminal disease sufferer appeals to John Key).

My email was forwarded to Health Minister, Tony Ryall, who at least has the intestinal fortitude to respond to my queries, unlike our spineless “Prime Minister”,

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(See:  Terminal disease sufferer appeals to John Key – Update & more questions)

I found Ryall’s response curious and requested clarification on his stament that he was “as a Minister […]  prevented by law from intervening in PHARMAC’s decision-making process”,

Date:Thursday, 22 November 2012 9:41 PM
From: Frank Macskasy “fmacskasy@yahoo.com”
Subject: Pompe Disease sufferers: A request for mercy
To: Tony Ryall “Tony.Ryall@parliament.govt.nz”

Sir,

I am in receipt of your email dated 22 November, regarding Enzyme Replacement Therapy (ERT) for sufferers of Pompe Disease. I understand you have already been in contact with Ms Allyson Lock on this matter.

You state that your reason for not supporting funding for ERT is – and I quote you – that “as a Minister I am prevented by law from intervening in PHARMAC’s decision-making process”.

I refer your attention to the 2008 election campaign where your Party pledged to extend herceptin treatment for breast cancer, from nine weeks to twelve months, even though Pharmac had up to that point been resisting all such requests on the grounds of cost and efficacy.

Post election, after becoming government, you implemented your election promise, and you stated in a press release dated 10 December 2008,

“We are extending funding for Herceptin to allow patients and their doctors to have a choice of a 12 months course. The nine-week treatment option also remains funded and available.”

I refer your attention to the following press releases from yourself and the Prime Minister, announcing additional funding for herception, despite PHARMAC’s initial decision opposing the move;

12-month Herceptin treatment now available

http://www.scoop.co.nz/stories/PA0812/S00083.htm

Government honours Herceptin promise

http://www.scoop.co.nz/stories/PA0812/S00082.htm

I have three subsequent questions, which you may be able to clarify;

1. If you are unable to intervene in PHARMAC’s  decision making process – what process did you use to fund herception from nine weeks to twelve months?

2. Where was funding obtained from?

3. Why are you unable to use the same process to fund ERT as you did for Herceptin?

I hope this problem can be resolved with some urgency, as Pompe Disease is terminal, and seven New Zealanders are facing a death sentence unless help is forthcoming.

Regards,

-Frank Macskasy

Blogger

Minister Ryall’s response only seemed to add to the impression that National’s intervention for breast cancer sufferers in 2008 was a political stunt, motivated for electoral advantage,  and nothing more. He wrote back on 5 December,

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(See: Health Minister circumvents law to fulfill 2008 election bribe? )

In his email, Ryall outlined how National circumvented the law and used Ministry of Health money as a slush fund to pay for their 2008 electoral promise (to extend herceptin treatment for breast cancer sufferers).

I replied six days later,

Date: Tuesday, 11 December 2012 9:17 PM
From: Frank Macskasy “fmacskasy@yahoo.com”
Subject: In response to your letter dated 5 December
To: Tony Ryall “Tony.Ryall@parliament.govt.nz”

Sir,

Re; Pompe Disease sufferers

Thank you for your letter dated 5 December explaining the circumstances and means by which Herception was funded outside of normal PHARMAC channels. Using the Ministry of Health to directly fund an extension of Herceptin for breast cancer sufferers was certainly a novel approach.

It occurs to me that the same process can be employed to fund Enzyme Replacement Therapies (ERT) for the seven New Zealanders who are suffering from the terminal condition known as Pompe Disease.

I do not accept that, as you suggest in your 5 December letter, that  “ in the current fiscal environment, unfortunately funding is not available for all treatments” since your government seems to find funding for events such as the Rugby World Cap ($220m); advertising by the NZ Defence Force ($20m); bonuses for  state owned enterprises employees ($54m); millions spent on tax breaks and advertising campaigns in the movie industry, etc.

There appears to be no valid reason that Pompe Disease sufferers are not offered the same “lifeline” that you extended breast cancer sufferers in 2008.

It is my contention that through clever negotiations,  government should be able to secure necessary ERT medication at a reasonable price, perhaps by offering contracts in others areas.

At least we have established that government is not constrained by legislation surrounding PHARMAC and that  flexibility exists with funding mechanisms.

I urge you to reconsider this issue and to find ways and means to facilitate a positive outcome for Pompe Disease sufferers.

Regards,
-Frank Macskasy

I have yet to receive a response.

Addendum 1

On 8 May 2012 Finance Minister, Bill English, conceded that partial-privatisation of Meridian, Genesis, Mighty River, Solid Energy, and further sell-down of Air New Zealand might result in the government having to borrow hundreds of millions of dollars to invest in those SOEs (see:  Govt might have to borrow more once assets sold).  But that’s ok, because English said,

“You’re looking at over the next three or four years growth in the Crown balance sheet net value of 20 or 25 billion dollars, so a few hundred million here and there is not acutally that big a commitment.“

It’s a shame the same sentiment cannot extended to New Zealanders desperatel requiring life-giving medicines.

Addendum 2

On 20 December 2012, the Remuneration Authority granted a 1.9% salary increase – back-dated to 1 July 2012 – for all politicians. (See:  MPs get 1.9 per cent pay rise)

Which is difficult to reconcile with Minister Ryall’s comment on 5 December 2012,

“… as I advised you in my letter of 22 November 2012, in the current fiscal environment, unfortunately funding is not available for all treatments.”

There is no compassion here.

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Salisbury School

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Salibury School.

This one beggars belief.

On 27 August 2012, Education Minister and National’s #1 Screw-Up announced the closure of an all-girl’s special needs residential school, at Richmond –  Salisbury School,

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Full story

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The all-female students were to be “re-integrated” (ie;  forcibly amalgamated) with Halswell School, in Christchurch. Halswell is described as a “Boys School, Sch. for Intellectual Impairments” on one website, www.school.nz.

There were immediate concerns about the wisdom and safety of placing vulnerable young women in an all-male environment, where both genders were highly vulnerable and at-risk from inappropriate  behaviour.

Despite the well-meaning – but ultimately misguided views of some – it is impossible to monitor every single young person. The numerous incidences of sexual abuse in religious institutions such as Catholic Schools should be sufficient evidence that children can be at severe risk of inappropriate behaviour and exploitation by others.

As an aside, this blogger condemns in the strongest possible terms the irresponsible comments and attitudes of certain individuals who, by their words, supported Parata’s unsound and dangerous proposals. (See:  Government ‘right’ to close school – academic)

Luckily for the young women of  Salisbury School and their families, sanity –  in the form of Justice Dobson of the High Court – prevailed.  On 12 December  2012, Justice Dobson ruled that  the Minister of Education’s decision to close Salisbury School was illegal.

Illegal – and completely, utterly, insane.

Justice Dobson said the proposed amalgamation created “the prospect of greater risk of sexual or physical abuse” to the girls if they shifted to a co-ed institution. It doesn’t take a Quantum Physicist to figure that one out (see:  School denies sex risk to pupils).

Only a person totally lacking in insight could have contemplated needlessly placing vulnerable young women into a position of potential harm.

Little wonder that Salisbury’s  Board chairwoman, Helen McDonnell stated with obvious frustration and anger,

“We do not believe the minister intends to retain Salisbury after 2014; her views, and those of her ministry, are clearly pre-determined. Therefore, we call on the Government to appoint another minister to take any decisions considered to be necessary.”

Parata is spectacularly inept beyond polite description.

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And only a political Party – National  in this instance – that shared such a lack of insight and awareness of personal  vulnerabilities,  could even contemplate  allowing such madness to proceed.

Question: had Parata’s decision stood and the amalgamation proceeded – who would have accepted responsibility for any harm to any of the young women students transferred to  Halswell with this mythical “wraparound care”?

Answer: no one.

Such is the way here in New Zealand.

Compassion? None demonstrated here. Only cold, hard-hearted indifference. And stupidity beyond belief.

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Welfare beneficiaries

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There is  nothing as low as kicking people when they are down.

The 2007/08 the Global Financial Crisis started a world away in Wall Street, USA. It would be fair to say that the Boards of Lehmann Bros, Goldman Sachs, AIG, General Motors, et al, did not comprise of  social welfare beneficiaries. It was not the Unemployed, solo-mothers, widows, Sick and Invalid, who made the decisions that would plunge the planet’s economy into an on-going Recession.

But listening to the likes of Paula Bennett and John Key, you would be be hard-pressed not to come to the conclusion that the victims of the Recession – and now social welfare recipients – did not cause the global economic meltdown.

Never have so few powerless been blamed for so many awful decisions by the  powerful.

Amongst Bennett’s agenda to demonise welfare recipients,

• solo parents on the Domestic Purposes Benefit would be required to look for part-time work when their youngest child is five and fulltime work when that child turns fourteen, (see:  Key: Mums of one-year-olds better off working). The inference being that looking after the nation’s children is not “real work”.
• Parents receiving welfare payments  would be made to enrol their children in early childhood education centres and  with a doctor.  (see:  Welfare reforms target kids’ education, health) The inference being that if you’ve just been made redundant, or left a violent partner, and in receipt of a social welfare benefit, that you are suddenly unfit to be a parent.
• mothers who have an additional baby already on the Domestic Purposes Benefit will be required to look for work after 12 months, (see:  IBID). The inference being that women on the DPB are deliberately becoming pregnant to receive more “handouts”. Fortunately, MSD data shows different.
• a proposal to  force women and their daughters, receiving a state benefit, on to contraception  (but no mandatory sterilisation for men on welfare) .  (see:  Birth control plan ‘belittling to women’). The inference being that women on welfare are of “loose morals”.
• a proposal to force social welfare recipients to immunise their children (see:  Benefits may be linked to kids’ jabs). The inference being that welfare recipirents are lazy, dirty, and diseased.
• mandatory drug-testing for welfare recipients (see:  Drug tests for more beneficiaries mooted). The inference being that welfare recipients – many of whom were in paid employment prior to the Global Financial Crisis – are now suddenly lazy drug addicts.
• actual drug and alcohol addicts recieving welfare assistance would not be drug tested.   (see:  Addicts escape beneficiary drug testing) Which kind of shows the pointlessness of this exercise; testing non-addicts – but leaving real addicts alone. Rationale: pandering to National’s ill-informed  Radio Talk back constituency; rabid right wing; and other assorted low-information voters.
• a plan to  stop welfare payments to beneficiaries subject to arrest warrants (see:  Beneficiaries on warrants face cash cut) Inference; that those on welfare are all criminals.
• specifically nominating “kidnappers” as having their welfare cut (see: Kidnappers among targets in benefit plan) Inference; Really, really – welfare beneficiaries are criminals!! In reality, people convicted and imprisoned for serious crimes already lose any welfare payments. Is Bennett suggesting that people have their benefits stopped before due process of the law determining guilt or innocence?
• and umpteen media stories, “explaining” the high cost of social welfare,   generated from Bennett’s office (see: Single mum on DPB for decades, Minister spells out $43,000 ‘salary’ claim for solo mum, Revealed: $100k-plus beneficiary homes,  Beneficiaries cost $130,000 over lifetime, Beneficiaries’ bill $78 billion . Notice how the sums involved get bigger and bigger?). Inference; bloody welfare beneficiaries are sucking this country dry. Never mind that prior to 2007/08, and the Global Financial Crisis, most welfare recipients actually had jobs.  In September 2008 there were 23,273 unemployed receiving a benefit. By September 2012, that number had more than doubled to 50,390   (see: MSD – September 2012 ). Did 27,117 suddenly decide that unemployment benefits of $200 a week was better than $600 or $700?! Only a  right wing bene-basher of low intelligence might think so – and most of those bigots are not quite right in the head,
• and just in case the Talkback Radio mob are too thick to comprehend National’s smear-campaign, Key spelt it out in simple syllables; Food parcel families made poor choices, says Key

See previous related blogposts:

Paula Bennett shows NZ how to take responsibility

Paula Bennett: one strike and she’s out

How Paula Bennett and National are wasting our taxdollars

Bennett confirms: there are not enough jobs!

Paula Bennett on unemployment: spin baby, spin!

The real obscenity here is two-fold,

1. That a financial crisis emanating from the other side of the planet, involving greed, and a considerable degree of law-breaking, was able to ruin the lives of so many workers and their families – whilst the CEOs of many of the cotrporations involved pocketed big, seven-figure, “bonuses”.

2. That John Key and Paula Bennett both benefitted from a social welfare system that gave them access to tax-payer’s money; subsidised accomodation; free education; etc. Bennett was even able to buy herself a house using her WINZ benefit. (See previous related blogpost: Hon. Paula Bennett, Minister of Hypocrisy)

For both Key and Bennett to now manipulate public opinion against welfare beneficiaries to take the “heat” of National for rising unemployment is despicable.

Key has stated that he believes welfare reform  would help lift people out of poverty. (See:  Key admits underclass still growing)

This makes no sense.

It is not welfare “reform” that is needed – there is nothing wrong with our welfare system. It is working precisely as it was intended to during times of hardship for ordinary New Zealanders. (See previous related blogpost: Welfare ain’t broke – It’s the Jobs that ain’t there, John-boy!)

What is needed are jobs and a programme for growth. Welfare “reforms” is a useless red-herring being dangled in front of National’s constituents (who still hold to the fantasy that beneficiaries caused the GFC as an excuse to stay on welfare).

Until John Key, Paula Bennett, Bill English, et al, stop fixating on welfare “reforms, one thing is crystal clear – National has no plans to reduce unemployment by creating jobs. Their only agenda is to frighten or coerce people of welfare, and deeper into poverty.

This isn’t compassion – it’s criminal.

Compassion? A psychopath would show more feelings toward his/her cat.

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