Archive

Posts Tagged ‘tony ryall’

“One should judge a society by how it looks after the sick and vulnerable” – part rua

.

Frank Macskasy   Frankly Speaking  blog  fmacskasy.wordpress.com  27-28 february 2013 - rare diseases disorders - New Zealand Organisation for Rare Disorders -NZORD

.

Continued from: “One should judge a society by how it looks after the sick and vulnerable” – part tahi

John opened the NZORD seminar with a welcome to attendees and members of the media.  He was sporting a newly designed purple ribbon, denoting support for people with rare conditions, and the every day struggles they face in their lives.

.

Frank Macskasy   Frankly Speaking  blog  fmacskasy.wordpress.com  27-28 february 2013 - rare diseases disorders - New Zealand Organisation for Rare Disorders -NZORD

.

Paul

Paul began by telling those present about his son, “Ja”, and his rare disease, Hunter Syndrome (MPSII). “Ja” is only one of two children in the country with this rare disease.

Paul’s concern, he told listener’s, was the problem of fairness in getting access to specialised medicines for rare diseases. Paul said that current enzyme replacement therapy, available world-wide, was proven to have an effect on this disease, by slowing its progress.

Paul told the seminar that in June 2010, Pharmac’s Dr Peter Moodie appeared on TVNZ’s “Close-Up” (now replaced by ‘Seven Sharp’) agreed that the drug ‘Elaprase’ (an enzyme replacement therapy) was an effective drug for “Ja’s” disorder. The drug was approved for the second child suffering Hunter Syndrome – but bizarrely, six months later, Pharmac declined access for “Ja”.

Paul’s son’s doctors immediately placed a second application for Pharmac to get funding for this treatment for his son.

Paul said they got results when they went on nationwide TV (See:  Campbell Live – “$500,000 drug treatment for boy”). He was not the first case where media attention had both accelerated the decision making process, but also had a positive treatment result. As he said,

When you talk about fairness and equity, this is the perfect example of two cases, of two kids, with exactly the same disease,  wanting exactly the same medicine. One was allowed access, one wasn’t. And we had to go on TV and beg for the drug. Parents of kids with rare diseases shouldn’t have to do that.”

Paul’s address to the seminar was short, lasting only a couple of minutes. But the power of his soft-spoken  words, describing his family’s experience in their dealings with Pharmac, was sufficient to get his message through,  with chilling clarity.

.

Frank Macskasy   Frankly Speaking  blog  fmacskasy.wordpress.com  27-28 february 2013 - rare diseases disorders - New Zealand Organisation for Rare Disorders -NZORD

Paul

.

Jo

Jo wanted to share her perspective of how a rare disease affects an ordinary family. In fact, Jo’s experiences and struggles were anything but “ordinary”. Jo described herself as the “proud mother of two  wonderful boys”, “J”, 9,  and  “C”, 11.

“C”  was diagnosed two years ago with a rare brain disease for which there is no cure; is degenerative; and life expectancy is mid-to-late teens.

At this point, I wondered at the inner strength of a parent who could talk about her child’s impending fate, in a room full of strangers. There was an underlying tension in Jo’s voice – unsurprising considering  the subject matter she was talking about. As if to underline this, Jo said,

No one said life was going to be easy, but we were not ready for this.”

Jo told the seminar that a drug called “genistein” – whilst not a cure – might help ease the symptoms. The drug is not available in New Zealand and they source it from a pharmacy in New York, USA.  She said the US pharmacy will not permit the medicine to be sold to a local pharmacy here in New Zealand. They will only on-sell to patients and their families.

Jo outlined the process by which they purchased  “genistein” from overseas. She had the support of her pediatrician in Dunedin; a metabolic specialist from Auckland’s Starship Hospital; and advice on dosage from another specialist, a Professor,  in Poland. They then “crossed their fingers” that the exchange rate was favourable when they made the purchase.

She then told the seminar that soon after the medicaton arrived into the country, they were phoned by NZ Customs, demanding payment of GST and Duty, on the medication.

Jo said they no longer have to pay some of the Duty on the  “genistein”, as they were exempt. She added, “I struck the nicest guy [at Customs] who had a heart“.

Jo questioned why her family should have to pay GST for a drug for her terminally ill son – a drug not otherwise available here in New Zealand. She asked,

Why should the government benefit from my son having an illness that will take his life. It is not a lot of money, but it is to us.”

Jo has written a book called “It’s OK”, about a child with a disability, starting a new schiool, and another child recognising that it’s ok to have a disability. She said it was the book they had been searching for, in relation to their son’s condition. It did not exist, so she wrote it herself.

Jo said that her local community in Otago held regular bingo nights to raise money to purchase the “genistein“ for “C”, and was hugely appreciative of their effiorts to support “C”.

Does the “genistein” work? Jo said they don’t know, and with a hint of resignation in her voice said,

There’s nothing else. That’s it.”

Jo then told listeners that their son, “C”, will become a donor. Jo said that she and her husband were trying to think of other parents, and hoping  that this decision would help them,

It will be ‘C’s’ gift to them.”

[Blogger’s note: At a time when Jo and her family are faced with the unimaginable, they still have the courage and forethought to think of others. This is people in their darkest moments, rising and being the best they can. I cannot put into words what I feel as I listen to Jo’s voice on my Recorder and write them here, for  others to read. To continue Jo’s story…]

Jo said it was impossible to try to explain, so others understood,  how such a rare disease affected  their family.  She said, “as a mum, there are days I cannot breathe“.

As Jo tried to describe the heart-wrenching feeling , as the disease took more and more “everyday things” from ‘C’, her voice began to break. She said,

There is not a day that I walk past ‘C’ without touching him as one day I will not be able to.”

She said she enjoyed days when she watched her boys play. “Life,” Jo said, “was not a dress rehearsal“, and she emphasised making the most of every day we had. She ended her address by saying,

Families dealing with a rare disease should be able to enjoy the time they have, not have to spend their time fighting for what they need.”

.

Frank Macskasy   Frankly Speaking  blog  fmacskasy.wordpress.com  27-28 february 2013 - rare diseases disorders - New Zealand Organisation for Rare Disorders -NZORD

Jo

.

Shannon

Shannon began by explaining that in 2010 her eight month old infant son, “Je” was diagnosed with kidney failure. At the time, she says, she believed “that was all she was dealing with“. Later, it was discovered, “Je” was suffering from a rare disease with a long, complicated name (but which Shannon can roll off her tongue with extraordinary ease), with the initials aHUS.

The condition is a genetic mutation resulting in chronic kidney failure, high blood pressure, neurological damage, risks of heart attacks and strokes and “the list is pretty endless“.

Though her young son was in bad shape at the time, doctors managed to restore kidney functions assisted with dialysis and stabilise him with plasma infusions. Later still, Shannon and her family learned that their best hope for “Je” was a drug called “soliris” – an expensive medication. Though “Je” was undergoing weekly plasma infusions – not much fun for a three year old little boy – that was not a long-term solution. When infusions are no longer effective, “Je’s” only other option will be “soliris”, Shannon said.

The medication is not funded by Pharmac.Two applications have been made to Pharmac – both rejected by the Agency.

Shannon and her family are busy fund-raising (see previous blogpost: ), knowing that every dollar they manage to raise will be a dollar that goes towards saving “Je’s” life. Shannon describes her activities as “a mad fund-raising mission”.

She says that “Je’s” health is currently stable, but that  60% of  aHUS sufferers do not survive their first year of diagnosis., “so we’re very lucky there”.

Shannon concluded by saying, “we have a pretty intense journey ahead“.

Blogger’s note: “Je’s” life will depend upon the generosity of ten thousand strangers, each  contributing $1 per week to save him – an awful dichotomy between the life of a child  and $1 per week. It is amazing how Nature’s cruelty can be offset by human beings’ love and compassion toward each other.

.

Frank Macskasy   Frankly Speaking  blog  fmacskasy.wordpress.com  27-28 february 2013 - rare diseases disorders - New Zealand Organisation for Rare Disorders -NZORD

Shannon

.

Allyson (assisted by Jenny)

Allyson has Pompe Disease – a condition shared by only six other people in this country.

With Jenny’s help, Allyson read from a pre-prepared power-point presentation on her lap-top.She called it “Innocent people dying under John Key’s Watch”.

Quoting Treasury’s website, Allyson stated that  $7.9 million was spent annually on Ministerial cars and chauffeurs. The figures covered Members of the Executive (government Ministers); leader of the Opposition;  former Governor Generals; former Prime Ministers; their wives’ judiciary; Distinguished Visitors (see: Govt paid $6000 limo tab for Warner Bros in Hobbit talks); as well as self-drive vehicles for Members of the Executive.

Allyson suggested that $8 million could pay for life-giving medication for everyone in the room.

Allyson pointed out other examples, such as drunk-drivers who killed someone being elegible for ACC, if they also happened to injure themselves. Even incarcerated criminals, she said, received more funding from government than sufferers of rare diseases did.

By comparison, she said, rare genetic diseases like theirs “got zero”.

Allyson’s application for enzyme replacement therapy treatment (ERT) has already been declined twice by Pharmac. “But I’ll go for three“, she said with a quiet chuckle. She said that the medication would slow down, or even stop,  the progression of her disease and offer a modest improvement, which is a “huge thing for a degenerative disease”. But Pharmac still rejected her application.

Allyson said she’s currently on a trial programme, for which she has to fly overseas – initially to Florida, and subsequently to Australia – and had to fund-raise by selling raffle tickets outside a super-market.

Selling raffle tickets to save my  own life. That’s pretty bad, isn’t it? For New Zealand. Or any other country.”

Allyson said there were sixty countries that funded ERT, but New Zealand and Australia were not one of them. “So we’re really in the Third World.”

Allyson explained that currently she was part of a drug trial that involved her travelling to Brisbane every two weeks (see previous blogpost for details). She was obviously worried that if the pharmaceutical company stopped the trial at any time, she would have to go “cap in hand” to Pharmac. There was an edge to her voice –  Allyson must have realised the likelihood of Pharmac granting consent to her application would most likely be nil.

Blogger’s note: Allyson’s life is currently in the hands of a pharmaceutical corporation that owes  very little to her. She is assisting their drug trial in a purely commercial transaction. By contrast, our own  government does nothing for her, or others, suffering from rare diseases.

Allyson considers herself lucky to be part of this drug trial, and says,

The alternative to not getting treatment  isn’t worth thinking about.”

.

Frank Macskasy   Frankly Speaking  blog  fmacskasy.wordpress.com  27-28 february 2013 - rare diseases disorders - New Zealand Organisation for Rare Disorders -NZORD

Allyson (L) and Jenny (R)

.

Olivia

Olivia began her talk by explaining the nature of Hereditary Angioedema (or HAE).

HAE is a potentially fatal, genetic condition that involves parts of the body swelling, and affects one in 50,000 people worldwide. There are 49 known sufferers here in New Zealand.

Olivia said that an attack can occur in the stomach, internal organs, and sometimes fatally, in the air-tract. Death by asphyxiation can occur in under twenty minutes, if not treated appropriately. She said there is one treatment only, which is available only  in certain major hospitals, for in-patients.

This current situation affected families of HAE sufferers who had to familiarise themselves with the locations and means of access to  specific hospitals that carry suitable treatment. Olivia said that because frontline staff are not always familiar with the condition, there can be critical delays in treatment. Olivia pointed out that a sufferer in Spain died during an attack, when hosital staff failed to recognise the condition correctly – even when presented with information regarding HAE.

As a consequence, Olivia said that,

International physicians are recommending that patients have the ability  to carry their own medication for treatment at a hospital...”

Olivia added that there is a new medication available to 37 other countries, including Iceland and Russia.Whilst the drug is not available here in New Zealand, if it were, it could be self-administered by the patient in his/her own home.

Olivia outlined what was required for HAE sufferers,

We need equal and fair  access for all patients across  all of New Zealand. Even if they live in a smaller town or city. We need timely access to treatments, either through a patient carrying their own supply, or through the ability to self-administer at home which is available in other countries as well. Also access to the best treatments that are available in other developed nations. These allow early treatments at the first sign of attack, meaning less hospital admissions; less severe attacks; and the ability for patients to carry on with their every day lives. “

Olivia criticised the current system which forced people to  spend their  limited time and resources on  fighting for access to treatments, rather than “looking after the health that we do have“.

And we don’t think that’s fair.”

.

Frank Macskasy   Frankly Speaking  blog  fmacskasy.wordpress.com  27-28 february 2013 - rare diseases disorders - New Zealand Organisation for Rare Disorders -NZORD

Olivia

.

Daniel

Daniel is a 32 year old father of one. He suffers from Paroxysmal nocturnal hemoglobinuria (PNH). He started by explaining his “journey”, and which started with experiencing odd symptoms that his then- partner suggested that he check up on. His GP insisted on blood tests which led to an MRI; then to a urologist; and then haematologist… and finally after nine months, a diagnosis of PNH was arrived at.

Daniel’s current treatment is referred to as a “supportive treatment”. This does not address the underlying causes of his condition, and only manages his blood levels, which are constantly fluctuating.

For deeper treatment, Daniel requires “soliris” – which Shannon’s son also needs for his condition. The drug prevents the body’s immune system from attacking red blood cells.

Daniel explained that many of the new drug treatments “are at the leading edge of science and health  technology” and by funding these innovative new treatments, they will eventually have greater applications and benefits. He said that by not funding these new treatments, the government is putting out a message that it is not interested in seeing science and technology develop in such a way as to treat other diseases and  benefit more people.

As a treatment, Daniel was offered a bone marrow transplant – which has considerable difficulties and risks for complications involved. With no sibling as a close blood-type match, Daniel would have had to seek assistance from a non-relation who matched him as closely as possible. He said a bone-marrow transplant offered a 50/50 chance of success – or coming out at the end in a worse state, “or potentially dead“.

An alternative was presented to Daniel when a UK specialist shared his research-findings in April last year (2012), regarding the use of “soliris” to treat PNH sufferers. What Daniel heard was like a beacon of hope being switched on,

With the treatment option [ “soliris”],  patients were living for the same period of  time as the general population, so mortality rates had dropped away. Without treatment, the expected survival is around ten years, so the median is about ten years, post-diagnosis. But with treatment, patients were living long and full lives. And the important thing for me was hearing some of the quality of life strories which he shared…living with PNH, one of the major symptoms is this constant and sometimes quite severe fatigue burden… to live day to day.

Daniel said it wasn’t just physical but the psychological impacts of living with a chronic disease, and the awareness that it’s “not going to go away”.

Daniel described  “soliris” as an “amazing treatment” that is “now proven to give people back quality of life” as well as extending their life span and which has been  part of the British public health system since 2008. In Australia it has been available since 2011.

Daniel asked the UK specialist,

What would you do in my situation?”

The reply from the visiting doctor was unequivocal, according to Daniel,

“There’s no question. If you were in the UK you’d be treated with “soliris”. You don’t go down the bone-marrow transplant [option], there’s too much risk involved. Internationally doctors are moving away from bone  marrow transplantation. Come to the UK.”

Whilst he was tempted to make use of other country’s health systems, Daniel recognised that there were many others in New Zealand – many of whom were young people – who desperately needed leading -edge drugs such as “soliris”, and he couldn’t “run away from these problems”. He said he and others were entitled to receive treatments that he had been paying taxes for a number of years.

Instead, Daniel did what Kiwis are famous for – he decided to take a stand for something which he recognised was grossly unfair.  He and others set up a patient association [The PNH Support Association of NZ] and have taken to lobbying government and Pharmac for funding for “soliris”.

Daniel made the point that PNH “rogue cells” are common in approximately 10% or 20% of the population. Occassionally, these rogue cells over-whelm healthy cells in the bone marrow and the disease becomes manifest. However, the visiting UK doctor informed Daniel that with life-spans extended by soliris, sufferers were often experiencing “spontaneous remission” as the body had more time to adapt and experience a kind of  “cure”.

Daniel then shared his experiences with Pharmac, after he and others had launched a media campaign, earlier this year, highlighting their difficulties at getting funding for treatment. He said,

I felt it was fairly non-agressive, fairly straight-forward… ‘We’re a group of patients; we’re sick; we want access to a particular drug. We didn’t hide away from the fact that it was a high cost treatment…”

He said, “we didn’t really attack Pharmac, we simply told the story of  ‘this is a treatment which has been under consideration for over 14 months’. We made it clear that there had been funds provided  by the drug company to support our media relations company, [but] none have come directly to the Association, but they have been paying for us to have access to this group. And we told our story.

And immediately on the same day, we began to see what John has described as the ‘clobbering machine’. The misinformation machine… essentially Pharmac is a hugely resourced government agency. It doesn’t take these stories lying down. It fights.”

According to Daniel, Pharmac fought back in the media with a variety of strategies, including denunciation by recognised leaders in various medical-related fields and painting the PNH Association as a proxy, attempting to speak on behalf of pharmaceuticals. Pharmac was also derisory about PNH sufferers, dismissing it as a “fashionable disease“.

(Blogger’s note: if, reading this, you are experiencing a sense of unease that taxpayer-funded state agencies are able to employ taxpayer-funded ‘spin doctors’ to counter public concerns surrounding Pharmac funding decisions – that is a normal reaction. It signals that, in an Age of Madness,  you are sane.)

Daniel said that many of Pharmac’s public statements did not make sense and it appeared that there was “a mechanism” within this public agency that worked to actively counter any argument it deemed critical of it’s performance. He said that whilst Pharmac was entitled to make its position clear, that it seemed that the agency was speaking through other groups and ‘proxies’ to put their message out to the public. Daniel said  “to me, this is an abuse of power“.

He said that the system is broken if people, such as the ones who had spoken at the seminar, were having to beg for treatment whilst being very sick.

Daniel said that he felt that the disease had not only taken over his health, but had taken over his life and that he was having to counter Pharmac and fight for what he believed to be a simple request; access to healthcare.

He said his concerns were two-fold.

Firstly Daniel believed that the system was “broken” and that decision-making for funding treatments for rare diseases be taken away from Pharmac, and given to a separate decision-making body. Such a new body, he said, would recognise a “different equation” where, by default, rare diseases would have to be treated differently.

Secondly, Daniel  said that “we need to be looking at Pharmac  and asking some questions about how it operates”. He said that as a government agency it is accountable to the citizens of the country, who it is supposedly serving, and has no mandate to attempt to “squash a small patient group”. He said there were problems around dissemination of mis-information, poor presentation of decision making processes, and a lack of transparency.

He repeated his assertion that, to him, this was an abuse of power by a governmental agency, and he hoped for better outcomes than this.

(Blogger’s note: And it should be said that when a government agency – of any description – uses media streategists and spin doctors to counter public concerns and criticisms – they are using our own taxes against us.)

.

Frank Macskasy   Frankly Speaking  blog  fmacskasy.wordpress.com  27-28 february 2013 - rare diseases disorders - New Zealand Organisation for Rare Disorders -NZORD

Daniel

.

Jane

Jane began by telling the seminar how shocked she was to hear other peoples’ stories on the previous evening of the Forum (27 February). She said she considered herself “lucky” in that she has resources, plus resources of her close friend, Susan, who Jane describes as “incredibly astute and on-the-ball” and very supportive.

So together, we quite a formidible team.”

Jane said that she’s managed to cope with her situation, but expressed concern for those less fortunate and with less resourcing and support.

“What about all those other people when someone looks them in the eye and says, ‘We’re terribly sorry but this is a disease that we just have to watch and wait‘?”

Jane detailed her own situation from initial diagnosis; the search for a stem-cell donor (no match anywhere); flying to Melbourne to consult a specialist;  and finally getting approval to commence a specialised drug, “azacitidene”.

Azacitidine” is not available in New Zealand. She said therefore that you either fund it yourself – or you don’t have it at all. Jane said if she doesn’t have it, “she’s going to drop through the ice” (See previous blogpost: “One should judge a society by how it looks after the sick and vulnerable” – part tahi )

Though not funded by Pharmac, “azacitidine” has won approval  for it to be administered. Her treatment starts in a couple of weeks.

Jane then posed the question to the seminar, “so why am I here?”.

She answered that she had the skills; the resources; the “team”; to work her way through the system; to research and network and therefore give herself a chance.

What about the person who can’t do that? What about the person who hasn’t got the resources? … They’re going to have no chance.”

Jane concluded by saying,

I just have this real concern that this is not fair. Health systems are not fair and equitable. It really relies on the individual, and relies on luck around the individual…This is an organisation that … by bringing people together, can make a difference.”

Next

Where this blogger reveals the author of the quote, “One should judge a society by how it looks after the sick and vulnerable” .

And where concrete proposals are made to reform Pharmac with a bold plan for a “Baby Pharmac”.

To be Continued at: “One should judge a society by how it looks after the sick and vulnerable” – part toru

.

*

.

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)

Media

Pharmac: The politics of playing god (16 June 2011)

$500,000 a year to keep toddler alive (5 Feb 2013)

Rare disease sufferers want pricey treatments (1 March 2013)

Rare disease takes awful toll on boy (1 March 2013)

Call for an Orphan drugs access policy to overcome Pharmac’s systems failure (28 Feb 2013)

Additional Information

Gregory John Coyle: How does the operation of PHARMAC’s ‘Community Exceptional Circumstances’ policy align with the distributive justice principles of fairness and equity?

The PNH Support Association of NZ

PNH Support: Petition to Government to Make Soliris available to New Zealanders!

Support for Jethro Morrow

Facebook: Support for Jethro Morrow Facebook Page

Facebook: NZ Rare Disease Day

Website: NZ Rare Disease Day

Facebook: Treat NZ Pompe Patients Now Facebook Page

Website: Pompe Network

Facebook: Lysosomal Diseases New Zealand

Website: Lysosomal Diseases New Zealand

Facebook: NZ Organisation for Rare Disorders

Website:  NZ Organisation for Rare Disorders   

Pompe Support: Petition to Government Fund Myozyme for Pompe Patients

Copyright (c)  Notice

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

  • Use must be for non-commercial purposes.
  • At all times, images must be used only in context, and not to denigrate individuals.
  • Acknowledgement of source is requested.

.

.

= fs =

Advertisements

“One should judge a society by how it looks after the sick and vulnerable” – part tahi

.

Frank Macskasy Frankly Speaking blog fmacskasy.wordpress.com 27-28 february 2013 - rare diseases disorders - New Zealand Organisation for Rare Disorders -NZORD

.

NZ, Wellington, 27/28 February – This blogger was invited to attend a forum held by NZORD (New Zealand Organisation for Rare Disorders).  The Forum addressed issues and problems surrounding PHARMAC funding (or lack, thereof)  for “orphan drugs” (see: Wikipedia – Orphan Drugs), for rare medical conditions such  such as Pompe Disease.

Until now, many of the folk involved (John Forman, Allyson Locke, and others) were just names and media stories to me.

But on the evening of 27 February, when I met Allyson at Wellington Airport, and subsequently met John at Rydges Hotel in downtown Wellington – they became very real, engaging people. I was finally able to put people-to-names.

And then I heard and learnt their own stories.

What I found humbled me and made me realise that their stories and their problems with PHARMAC could be any New Zealander impacted by government policies.

These were our stories as well as theirs.

27 February

About 20 people met in the Rydge’s Function Room. It was a bright sunny day outside – and the hotel’s air-conditioning was on the blink. The heat was stifling; comments were made about hot-house conditions suitable for growing tomatoes; fans were brought in; and Management expressed their apology by shouting us five free bottles of wine later, during our buffet dinner. (Since I was driving, it was water for me.)

The Forum kicked off with John Forman, Executive Director of NZORD, welcoming attendees,

.

27-28 february 2013 - rare diseases disorders - New Zealand Organisation for Rare Disorders -NZORD

.

John introduced himself and explained his own situation,  referring to two family member with a rare disorder. This has given him  first-hand, intimate  empathy with people living with rare diseases and disorders.  He works in the dual roles of Executive Director of New Zealand Organisation for Rare Disorders and Chairperson for the Lysosomal Diseases support group. He has worked in this field, at first part-time and now full-time, for fifteen years.

John then invited those present to give a brief introduction to their own situation.

Daniel

Daniel explained his rare disease – PNH –  and that he is currently fighting to gain access for medication that is known to be a life-saving treatment for people with his condition. His group, The PNH Support Association of NZ, launched a media campaign this year to highlight their fight to access treatment for their condition.

He said that the Pharmac process had been ongoing for twelve to fourteen months. His group are pushing for release of documents from Pharmac relating to their application for drug-funding.

Daniel is a founding member of the The PNH Support Association of NZ which is currently running an online  Petition to Government to Make Soliris available to New Zealanders. [Blogger’s note: please take a moment to sign the petition. It will take only a couple of minutes, and will be the best thing you can do to help Daniel and his fellow PNH sufferers.]

Daniel said he lives with a disease that effects his life on a daily basis, and was excited about prospects to help his, and fellow sufferer’s, situation.

Paul

Paul spoke on behalf of his young son, “Ja”, advising the group of the rare disease, Hunter Syndrome (MPSII) that affects him. His son had undergone a bone-marrow transplant in October last year, following twelve weeks of Enzyme Replacement Therapy (ERT). Paul’s son was one of the few cases where Pharmac has funded ERT, and they appeared on “Campbell Live”.  (See:  Campbell Live – $500,000 drug treatment for boy)

Paul said that his son is doing “really well” at present, but will be going back to Starship Hospital for further, ongoing treatment.

Shannon

Shannon also spoke on behalf of her three year-old young boy, “Je”, who has a life-threatening, genetic disorder. She rattled of the lengthy, tongue-twisting, medical name for the disorder with an ease that suggested how frighteningly and  intimately familiar she was with her son’s condition. (I doubt most doctors could repeat the name with such ease.)

Shannon explained that whilst her little boy was presently stable, there was currently no cure for the condition. “Je” has plasma infusions every week – not much fun for a three year old lad who should be out playing with his mates and doing all the things that other three year olds do.

Shannon said that at some stage he will need “soliris”  –  “the sooner the better for a quality of life”. She hopes for funding in the near future, and in the meantime has been privately fund-raising. Shannon is asking ten thousand  people to donate $1 a week, to pay for upcoming treatment with ‘Soliris’. She said they were a quarter of the way to her target with two and a half thousand people making $1 weekly donations, plus extra donations coming in from other fund-raising activities, events, and auctions.

“I basically fund-raise non-stop… I’d like to basically give him a relatively normal life ,” she told the Forum.

Despite Shannon’s soft-voice and demeanour, she held a steely determination to do the very best she could for her son. She is obviously not going to give up on him.

People wanting to help Jethro can do so through the following;

http://supportforjethro.co.nz/

https://www.facebook.com/pages/Support-for-Jethro-Morrow-aka-Jethro-Gantley/251266464918462

http://www.stuff.co.nz/national/health/8262237/500-000-a-year-to-keep-toddler-alive

Remember – just $1 a week!

Jo

Told the Forum that her eleven year old son, “Co”, was diagnosed with a rare disorder two years ago. She said, “there is no cure, and there is no treatment”.

Jo said that her family imports a drug from the United States called “genistein“, but it’s use is “purely a trial”. She said it may help to ease the symptoms.

Jo said that “Co” is still walking – but his life expectancy was mid-to-late teens only.

At one point Jo found it difficult to explain why she was attending the Forum, but said that it was good to be with other people who had “been through the same journey, and probably understands”.  She referred to the “huge”  implications of a late-diagnosed disease and ongoing battles relating to her son’s condition.

Marianne

Marianne is from Dunedin and both her adult sons are affected with the same rare disorder, MPS1. She said that whilst both her sons are “living relatively normal day-to-day with the condition, as much as they can”, there was no enzyme-replacement therapy  that would be effective for their particular situation.

Marianne said that they were living their lives in the “present day like kids would their age” but that the disease might not manifest problems until they were much older. She said she was attending the Forum to be kept up to date “in the loop”, and appreciated that others who were present, had a “hard journey to make”.

Brenda

Brenda’s family in the UK had been devastated by a rare disease and told the Forum that “it’s now working it’s way through family here”.

Brenda’s  granddaughters have not been tested yet, and said that was  “a shock yet to come”.  She says her daughter, “D”, has Fabry diagnosis – hence a 50/50 chance that her two granddaughters  may also have the disease.

Brenda said she had been “a bit naive all my life”, thinking  that “when you got sick, you  got treated”. But she said she was horrified to learn that even living in a developed country that was not always the case.

Brenda said she wanted to help, “I want to do something, I don’t know what….just to do something, to kick arse!”, which prompted laughter from the Forum attendees.

Jane

Jane told the forum that her condition was often just a chronic disease but in her case was more serious.   She’d recently sought an opinion from our nearest centre of excellence for the disease in Melbourne where she was told that despite having ‘a performance level of 0’ and being ‘extremely well’ she is now in the ‘high risk’ category.  The specialist described her as being “a really good ice skater but that the longer she skated the thinner the ice”, and she could “crash through” at any moment.

Quite liking being alive, Jane’s uses her skills and resources to challenge and achieve opportunities.  She expressed her determination “to get what I need“, and referred to her “terrier” nature; getting her teeth in; and not letting go, but it takes huge effort.

Jane said “the rules of engagement are not explicit” and it is hard to work them out.  They [the system] expected people in her situation to follow a certain “role”. She said if you altered that, it can make a big difference, but not everyone could do that and many would just walk away.

A treatment is available in many other countries for people categorised as high risk however, it’s not available here. She has decided to self fund even if it means becoming “houseless” in the process.  However she expressed real concern and called it “dreadful” that someone else with similar health status but without her resources would just have to accept that only supportive care would be available for them.

Susan, Jane’s Friend

Susan and Jane have been friends for the last 20 years and as she put it, “it’s a helluva journey to be a support person“, and immediately expressed her feelings at what she had heard from others at the Forum.

Susan launched into a well-reasoned, articulate description of the system. She also said that whenever they go to Capital Coast Health  [Blogger’s note: Wellington Public Hospital as it was once called, in simpler times], it was as if they were teaching them that they were people first and patient second.

Susan referred to the “ease with which judgements are made” with regards to Jane’s situation and that often it was necessary to challenge what was behind the judgements. She said not knowing how the system worked that made being proactive in support of Jane more complex.  For example under what criteria would a person qualify for special assistance and does a successful application come with additional funding.

Dr Greg Coyle

Dr Greg Coyle explained that he is a principal  advisor to the Salvation Army who has written a thesis on exploring the boundary between what was provided to an individual, compared to what was provided to society as a whole. His thesis explored how fairness came into the issue. He said it was a policy analysis, and looked at how the system worked and did not work.

See: How does the operation of PHARMAC’s ‘Community Exceptional Circumstances’ policy align with the distributive justice principles of fairness and equity?

He said he looked at how disadvanged people have huge barriers  put in front of them for the normal and simple things in life.

Dr Coyle advised the Forum that he would explain his thesis, in more depth, tomorrow.

Freda

Freda, of Ngapuhi, greeted the Forum in Te Reo.

Freda told the Forum  that twentyone years ago, she had  been diagnosed with “acid maltose glycogen deficiency” – aka Pompe Disease.  In fact, Freda was the first person in New Zealand ever to be diagnosed with the condition.

At first, Freda was happy with the diagnosis, as she had been sick for a long time without knowing the cause. That happiness rapidly disappeared when she was told; there was no cure. Her reaction was simple,

“What the ‘heck’?!”

At this point in her life, Freda had a young, three year old son, and her oldest son was getting reading to go to Boarding School. And now she’d been diagnosed with a condition for which there was no known cure.

She asked the specialists, “Well, what do I do?“.

One specialist  replied, “Nothing. Go home.You probably won’t live till 40.”

Freda did live to see her 40th birthday, and in her own words, celebrated the event with a “hua of a party – two days, we partied!”. And every birthday party since then has been an unbridled celebration of another year lived, and the disease kept at bay.

Freda says that whilst it is her pure determination that has kept her going, that it is getting harder for her to walk and get around.

Freda then shared with the Forum the chilling fact that she had applied three times with Pharmac for treatment – and had her application  denied all  three times. She said she had been given a “host of reasons“.

When asked by this blogger if she would apply again, Freda said she was considering a fourth application. She said she was thinking about it. Having just become a grandmother, and seeing another granddaughter come into the world in three weeks time,  Freda said she wanted to take them to Kapa Haka; she wanted to take them to ballet. “Because trust me,” she said, “both my grand-daughters, they’re going to do ballet“.

Freda said she wanted to sing to them, as  she had done for her sons.

She then wondered if it was worth  putting in a fourth application, and suffer the emotional let-down? She said, “stuff it, I don’t want to be let down again“.

She said her condition was worsening and even a common cold affected her harshly, as she had very little immune system. If she fell, Freda said, her bones would not mend,

I’m getting tired. I’m so tired… It’s a struggle. I think all of us are in the same boat. Be it your daughter. Be it your son. Be it yourself, we’ve all been there“.

Freda brightened when she referred to Allyson, who was sitting beside her, saying,

Allyson, she and I may not be bioligically comnnected. [But] She’s my sister. For she’s the only other woman in this country who has the same disease as me.”

It was something that this Blogger noticed; Freda and Allyson seemed to have a special bond. Closer to being sisters than friends.  I wondered if their mutual support for each other gave them both added strength – to keep  going despite constant rejections for medical treatment, and a looming future that was bleak.

.

Frank Macskasy   Frankly Speaking  blog  fmacskasy.wordpress.com  27-28 february 2013 - rare diseases disorders - New Zealand Organisation for Rare Disorders -NZORD

Freda (L) and Allyson (R)

.

Allyson

Allyson began by confirming her status as a Pompe Disease sufferer. She said, with a warm smile at Freda,

We, that’s going to be a hard act to follow…”

Freda replied,

Well, I would break out, with a waiata, but...”

They both laughed at that and Allyson continued,

“…All of us are struggling. None of us should have to struggle this hard to get treatment. Just having the disease is bad enough. Why should you have to grovel to Pharmac and have them say ‘no, you’re not worth spending the money on’.

I don’t quite know what to do about it. We’ve tried and tried. We have to keep trying. Eventually they’ll have to do something.”

Allyson then pointed to the National Government over-turning Pharmac’s decision on Herceptin and another medication,

They’ve set a precedent for being able to do that [over-turning a Pharmac decision].”

Allyson also pointed to Pharmac using high costs of  drugs to garner public sympathy for their refusals to fund treatment,

It’s actually a lie and they say that to try and gather sympathy from the public and people say , ‘Oh well, yeah why should we spend $500,000 on you when they could help fifty other people with diabetes?'”

But we’re going to die if we don’t get help, she said.

But every time you try and stand up to them, to say ‘Hey we really need this thing, ‘cos we’re actually going to die if you don’t, ‘cos this is a fatal disease that we’ve got”… they sort of clobber us down  by saying ‘well, you know,  if we help you, then Joe over here is going to die along with a hundred mates..”

“We need everyone to be helped.”

Allyson added that she was one of the “lucky few” who was part of a drug-testing trial. Every two weeks she had to travel to Brisbane for treatment.

The travel involved leaving on Wednesday by driving from Masterton to Palmerston North; flying from Palmerston North to Auckland; flying from Auckland to Brisbane; driving next day to a hospital; having treatment; next day flying from Brisbane to Auckland; staying in Auckland overnight; then flying from Auckland to Palmerston North, and then driving from Palmerston North, home to Masterton. In the meantime her husband took time off work to care for their children. (Travel, food, and accomodation costs are met by the drug company.)

This routine takes place every two weeks.

It should be pointed out that Allyson uses an electric mobility-scooter; tires easily; and has difficulty breathing by late afternoon. She can stand, but not walk for more than a few steps.

Imagine the outrage if a government attempted to force a similar wheelchair bound person – suffering from a disease that could be treated easily here in New Zealand – to travel overseas every two weeks.

The stress of this constant travel cannot be helping Allyson’s already weakened state.

[Blogger’s note: by late Wednesday evening, Allyson’s breathing had become a noticeable wheezing. She took laboured breaths at semi-regular moments. I cannot help but wonder at the damage high-altitude flight, in a pressurised cabin, must be causing her. Perhaps Health Minister Tony Ryall and Pharmac Medical Director Dr Peter Moodie, should accompany Allyson next time she makes her arduous journey to Brisbane and back? My money is on a big, fat, ‘No!’ to that.]

However, Allyson expressed her gratitude that she had the option of engaging in the life-giving drug trial. Allyson knew she was one of the lucky ones. She pointed out that Freda is already too frail to make the flight to and back from Australia. Freda has not even been given the choice of participating in the drugs trial. She is receiving no treatment. Freda is simply awaiting her fate.

[Blogger’s pi**ed off note: One wonders if this is good enough for our country? Or is it ok because it’s happening to someone we don’t know?]

Allyson commented that she had an anger towards politicians in the Beehive,

They spent nearly eight million dollars on chauffeurs. This was, I think, 2010 Vote Ministerial Services. Where I got that was from the Treasury website. So that was verifiable,  that’s what they spent. That would help a lot of us in this room. But that was just for one year.”

(See: Govt’s VIP limo fleet cost goes up)

Greg Coyle added,

The point you’re making is how does the government prioritise the life of one person?”

Allyson agreed, adding,

Is providing a limo service for all the dignitaries from overseas and our ones here, at $8 million a year, more important than saving a life? That would help a lot of us in this room, right now.”

Jenny

Jenny introduced herself as Administrator at Lysosomal Diseases New Zealand head office. It is a field she has worked in for twelve years. Jenny is close to the members of her association, saying,

I’m right at the coalface and I work quite closely with these guys. We cry together, we laugh together. Obviously it’s very distressing seeing these guys get  turned down time and time again [by Pharmac].”

Jenny is also a mother to a son, “Ha” and daughter, “Sa”, who have a very rare disease – in fact the only two people in the country with this particular condition. She said that her role is to fight for  good clinical outcomes. Jenny said that managing her children’s rare disease has been difficult, and pointed out that there have been many times when “Ha”, in particular, has been put at risk by the inaction of  her local DHB.

Jenny therefore has many roles; organisational administrator, advocate, and a mother.

Chris Higgins

Chris is Chief Executive for Muscular Dystrophy Association of New Zealand. He said that Freda and Allyson were the reason that he was attending the Forum, as Pompe Disease was also a neuro-muscular condition.

Chris told attendees at the Forum that Muscular Dystrophy Association covered forty different neuro-muscular conditions, including muscular dystropy. All are rare diseases. With the exception of Pompe Disease there was no cure or treatment for any of them.

Chris remarked that he had not seen Allyson for two or three years, and that her disease had taken it’s toll on her. With a wry smile, Allyson said she thought that Chris was amazed she was still alive. Allyson added,

Damn, I thought you were going to say I looked good.”

Chris went on to say that he was moved to hear other people’s stories; people who are directly affected by the issues; particularly Freda and Allyson and that it “grounded him back to reality”.

He thanked the Forum for the humbling privilege of being invited to attend.

Olivia

Olivia is a director of HAE Australasia, which is a patient advocacy and  support group for Hereditary Angioedema or HAE. Olivia said there were 40 known patients in New Zealand alone and possibly more undiagnosed. She said HAE is a swelling disorder that can have sudden onset. The condition is life-threatening; extremely painful; and an  attack can take place in twenty minutes. There is only one treatment available in thre country. Olivia said there was often difficulty in explaining the condition to EDs at hospitals.

Olivia said that her group is looking for both additional treatments both here in New Zealand and overseas, as well as better access to the one treatment already available.

Lucy

Lucy is a lawyer who has given assistence to John on various issues. Lucy said she she was also concerned at issues of morality and what sort of society do we want to live in. She said she wanted a society where people who were vulnerable had wrap-around services, rather than being isolated and having to fight the system.

Lucy said there should be abilities  for exceptional circumstances; where discretionary decisions can be made.

Lucy  said that Pharmac’s process did not provide for exceptional circumstances or  funding for treatments outside their usual criteria. But listening to these cases,  “is this not the exceptional circumstances they’re talking about“?

She said there will always be people who are not the greatest number and who are at the margins with rare diseases. What kind of equity was there in a system that ignored their needs?  Lucy voiced her frustration at a system that ignored people’s needs. She gave an example of ACC providing a better service if you were disabled through an accident than if you were born with it. These are things that reflect on our society.

Lucy closed by saying she would be willing to offer her legal services to help in this area.

At this point one of the attendees quietly asked in a hopeful voice, “Do you do divorce cases?”

There was instant laughter to this.

Lucy declined to take the case.

She did, however,  make the point that there was a big difference to where only one drug was available for a rare disease than  to situations where Pharmac had to consider a fourth generation drug over a third generation product already funded.  In cases of rare diseases,  there was no drug treatment being funded by Pharmac whatsoever.

Lucy had no sympathy at all for people in high decision-making roles who wanted to put some difficult issues into the Too Hard Basket,  by saying they couldn’t assess morality as part of any decision. Lucy was adamant and said,

Well tough luck, buddy, you signed up for that decion-making role. You stepped forward to make those tough decisions – so just make them. Don’t say you can’t assess them.”

Meeting and listening to people at this Forum gave me two valuable insights…

  1. Their afflictions – many of them untreatable and terminal – had not affected their sense of humour. They were still able to crack jokes – often at their own expense.
  2. The people in the room were ordinary New Zealanders – mostly middle class; ages ranging from early 20s to 60; men and women. These were the “mums and dads” that politicians often refer to when seeking their votes at election time. And they are the ones who will most likely vote.

These folk are not seasoned political activists. They are people that live next to us in our neighbourhoods; who pass us on the footpath; and stand in line with us at the supermarket.

They are the face of New Zealand. And they have come up hard against The System and political intransigence.

Next

Where people’s stories are continued – and begin to touch upon reforming Pharmac…

To be Continued at: “One should judge a society by how it looks after the sick and vulnerable” – part rua

 

.

*

.

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)

Media

Pharmac: The politics of playing god (16 June 2011)

$500,000 a year to keep toddler alive (5 Feb 2013)

Rare disease sufferers want pricey treatments (1 March 2013)

Rare disease takes awful toll on boy (1 March 2013)

Call for an Orphan drugs access policy to overcome Pharmac’s systems failure (28 Feb 2013)

Additional Information

Gregory John Coyle: How does the operation of PHARMAC’s ‘Community Exceptional Circumstances’ policy align with the distributive justice principles of fairness and equity?

The PNH Support Association of NZ

PNH Support: Petition to Government to Make Soliris available to New Zealanders!

Support for Jethro Morrow

Facebook: Support for Jethro Morrow Facebook Page

Facebook: NZ Rare Disease Day

Website: NZ Rare Disease Day

Facebook: Treat NZ Pompe Patients Now Facebook Page

Website: Pompe Network

Facebook: Lysosomal Diseases New Zealand

Website: Lysosomal Diseases New Zealand

Facebook: NZ Organisation for Rare Disorders

Website:  NZ Organisation for Rare Disorders   

Pompe Support: Petition to Government Fund Myozyme for Pompe Patients

Copyright (c)  Notice

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

  • Use must be for non-commercial purposes.
  • At all times, images must be used only in context, and not to denigrate individuals.
  • Acknowledgement of source is requested.

.

.

= fs =

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

20 January 2013 28 comments

.

Key faces questions over extra Antarctica funding

Full story

.

There are two issues involved with the above story.

Firstly…

The Government spends $26 million on climate research every year. The Prime Minister says that will increase.

There’s always an issue of money but we can find money for the right projects.”

Climate research is a fine endeavour, and this blogger has no problem with that.

What this blogger has a real problem with is when National’s quango’s come up with nasty suggestions like this,

.

Doubt over savings from restricting ear treatment

Full story

.

Or, National point-blank refuses to fund life-saving medication in instances like this,

.

mum-not-prepared-to-wait-and-die

Full story

.

There seems to be a multitude of “worthy causes” for National in invest our tax dollars in; subsidies for film makers such as Warner Bros; subsidies for the rugby world cup; loans for media companies (which they initially lied about); grants to businesses; advisors; consultants; staff bonuses; MPs travel expenses, and of course, salary rises for members of Parliament.

But when it comes to grommet operations for our children and medication for sick New Zealanders, the response is not quite as generous, as Tony Ryall ‘explained’ to me on 22 November last year,

.

email-tony-ryall-pompe-disease-22-nov-2012

.

And then explained on 5 December, explained  how he had pulled a neat little trick to fund National’s promised extension for Herception treatment, outside of PHARMAC rules,

.

email-tony-ryall-pompe-disease-5-dec-2012

.

(Note: in all fairness, Tony Ryall is perhaps the only Minister who has the balls to actually respond to my queries. The rest are either evasive, or like Bill English do not reply at all.)

Secondly…

In the above article at the top, TV3 reporter, Samantha Hayes, wrote,

It’s that variability New Zealand scientists want to investigate, using funds from a joint public and private venture – the newly formed Antarctic Research Institute.

See: Key faces questions over extra Antarctica funding

Pardon?

Why is the Antarctic Research Institute a “joint public and private venture”?

What does the private sector hope to gain from research by the Antarctic Research Institute?

On 21 August 2012, the NZ Herald reported,

The New Zealand Antarctic Research Institute was launched by Prime Minister John Key last night at Premier House.

It will operate as a public-private partnership.

The institute will be closely aligned to the crown entity Antarctic New Zealand and its chairman, Rob Fenwick, will chair the institute as well.

See: $5.3m gift sets up Antarctic research unit

About Mr Fenwick,

Rob Fenwick is an experienced businessman and company director with interests closely aligned to promoting sustainable development. He has had a long association with Antarctica: for nine years until 2007 he was a director and later chairman of Landcare Research, one of several CRIs involved in Antarctic research, and is a former chairman of the Antarctic Heritage Trust. In 2005 the New Zealand Geographic Society named the Fenwick Ice Piedmont in the Ross Sea for his work in Antarctica. 

He is a co-founder and director of Living Earth Ltd, New Zealand’s principal organic waste management business and is active in policy development around waste minimisation and climate change, and has been a member of several Government working groups in these areas. He is a special advisor to the Department of Conservation and was conferred with the degree of Doctor of Natural Resources, honoris causa, by Lincoln University this year.

See: antarcticanz.govt.nz/rob-fenwick

The Herald article goes on,

The institute’s director will be Professor Gary Wilson of Otago University, who said the goal was to strengthen Antarctic research capacity in New Zealand through international collaboration on research projects.

“Antarctica and the Southern Ocean hold the solutions to many of the key questions scientists and policymakers need to answer in order to manage the threats of climate change and global resource depletion.”

“Global resource depletion”…

One has to wonder what was so important that our Dear Leader, John Key, had to make the eight hour long flight – after collapsing at a Christchurch restaurant?! Surely not to return three bottles of whiskey to Shackleton’s hut??

Why is the private sector involved in a joint public and private venture with the newly formed Antarctic Research Institute? PPPs are usually formed  where there is the potential for profit by the private investor.

Or is it that Gareth Morgan has a point when he sez on his blog,

Taking care of Antarctica requires a constant diplomatic effort. John Key’s visit may look like the usual smile and wave routine, but the symbolism is much stronger. His presence is simultaneously reasserting our claim, bolstering our position at the negotiation table, and recognising the wonderful contribution the Scott Base installation has made for so long. Declaring to the world that Antarctica is important to us and we want it managed well is central to Mr Key’s visit. New Zealand has a long history of leadership in Antarctica.

See: Key Antarctica trip more than waving at penguins

Methinks there is more to this story than we’ve been told.

.

.

*

.

Other blogs

Gareth  Morgan: Key Antarctica trip more than waving at penguins

References

Beehive Press Release

Antarctica New Zealand

Previous related blogposts

Children’s Health: not a high priority for Health Minister Tony Ryall

Health Minister circumvents law to fulfill 2008 election bribe?

Terminal disease sufferer appeals to John Key – Update & more questions

.

.

= fs =

Children’s Health: not a high priority for Health Minister Tony Ryall

11 January 2013 30 comments

.

hodgson-cartoon-12-sept

.

There was a time in New Zealand when health professionals like the legendary Doctor Smith created the first health system in the Hokianga without a single bureaucrat in sight. Until health management was corporatised under National 20 years ago the Coast had some outstanding no-nonsense characters in the public system but the intervening period has seen such people increasingly undermined by irrelevant bureaucracy and absurd political agendas.” – David Tranter, 9 January 2013

.

After the spectacular cock-ups by Education Minister, Hekia Parata, it seems that the Health sector is next in line for the “National Treatment”.

Tony Ryall has demanded that the Health Budget be cut by $30 million this financial year (see:  Govt eyes cuts to elective surgery) Cuts to elective procedures that National’s spin-meisters “deemed to be of little benefit” are being planned – and details released to the media during the new season/holiday period when the public’s attention is focused on relaxation, barbecues, beaches, and “sinking a few coldies“.

Most of the mainstream media is also still “on holiday”, with minimal current affairs and investigative reporting being carried out by Radio NZ, TV3, and TV1. Only print media is reporting National’s covert cost-cutting programme – and even then, the Herald seems to be printing comments such as,

The National Health Committee has to find savings of $30 million this financial year from elective procedures deemed to be of little benefit.

The money would be used for smarter investment in other parts of the health system.

See: Govt eyes cuts to elective surgery

Note no quotation marks anywhere through those two paragraphs. The statements are presented as reported fact – not as government media  statement reflecting National Party policy.

This appears to be a re-run of National’s disastrous  “health reforms”  of the late 1990s,

.

[National] Govt refuses extra ENT funding - ODT - 27 March 1997

Govt refuses extra ENT funding – ODT – 27 March 1997

.

Call for funds  - ODT - 1 April 1997

Call for funds – ODT – 1 April 1997

.

Wait for grommets a worry - ODT - 16 April 1997

Wait for grommets a worry – ODT – 16 April 1997

.

Child health-care 'neglected' - ODT - 22 May 1997

Child health-care ‘neglected’ – ODT – 22 May 1997

.

Sick children wait 2 years for surgery - ODT - 28 July 1997

Sick children wait 2 years for surgery – ODT – 28 July 1997

.

Grommet 'blitz' clears backlog - ODT 19 November 1998

Grommet ‘blitz’ clears backlog – ODT 19 November 1998

Grommet 'blitz' clears backlog - ODT 19 November 1998

Grommet ‘blitz’ clears backlog – ODT 19 November 1998

.

By the time Labour came to power in late 1999, the public Health system was a mess. National had gutted healthcare through funding cuts; increased management-bureacracy; closures; low salaries for front-line staff; and a slavish adherence to right wing dogma over the needs of communities and people.

The new incoming Labour-led government had much to re-build,

.

$1.5b injection for health - 9 December 2001

$1.5b injection for health – 9 December 2001

.

(When National supporters talk of Labour “wasting money” during their nine years in government – this is what they are actually referring to: the re-building of our public services.)

Note the weasel-words from Roger Sowry, National’s health spokesperson, in the above article,

Roger Sowry dismissed the announcement as a cynical, political move to hose down hotspots in health, including angst over waiting lists, DHB debts and health workers striking for higher  pay.

[…]

“It’s about politics. It’s not about the patient. It’s about saying we’ve got a problem with health, we can get a story out that there’s   a big lot of money coming down the barrel – it’s  about buying a comfort level for the next election.”

Roger Sowry should know about “hosing down hotspots in health, including angst over waiting lists, DHB debts and health workers striking for higher  pay” –  that is precisely the mess that National  left this country up until they were booted out in 1999.

The above stories are just a tiny few of the headlines from the 1990s.

Here are a few more that Mr Sowry might recognise – or should recognise. They all happened on his watch,

Claim many burned out by health sector reforms – 21 December 1996

Minister asked to halt job cuts  – 24 December 1996

Retiring GP pleased to escape growing bureacracy – 3 January 1997

$1m of health funds spent to date on rent for empty office space – 25 January 1997

More health changes tipped – 8 March 1997

Health reforms ‘harebrained’ – 15 March 1997

Rural abdication mockery of health system –  22 May 1997

Must pay for ‘wants’  – 19 July 1997

Cuts to hospital services expected – 8 August  1997

Move for sick to pay more  – 12 October 1997

English gives surgery pledge –  12 October 1997

Death The Northland Way – The Star – 15 October 1997

CHE announces cuts to public nursing hours – 15 October 1997

The Nation’s Health – 1 November 1997

‘Serious flaws’ in Govt’s health funding formula  – 31 January 1998

Privatising the public health system  – 2 February 1998

GP hits out at health reforms – 3 February 1998

Acute heart surgery list nearly 400  – 5 February 1998

Funding for Dunedin eye clinic slashed –  26 February 1998

Anger on heart op delay – 12 April 1998

Poorer patients put off doctors’ visits –  29 March 1998

Shipley, Bolger sorry for deaths of patients – 3 April 1998

Booking systems risky process, surgeon says  – 8 April 1998

Deaths hangs over boost in health funds – 9 April – 1998

Life on the waiting list uncertain – 9 April 1998

English may review waiting list funding –  11 April 1998

Health cuts spell doom for services – 30 April 1998

English agrees system flawed – 19 May 1998

Hospitals now owe $1.3 billion – 4 June 1998

100 drop off surgery lists  – 10 October 1998

Health sector needs stability, minister says – 28 January 1999

Four forced off waiting list die  – 15 March 1999

Patients ‘no better off’ – 29 March 1999

Widow says little improvement seem – 3 April 1999

Hospital waiting lists nudge 200,000 – 4 April 1999

Staff shortages could hit patient care, say nurses  – 4 May 1999

NZ heart attack victims likelier to die – 7 August 1999

Public hospital ills blamed on funding – 20 August 1999

Health spending rates poorly – 24 August 1999

Home Invasion – 24 June 2000

etc, etc…

That was the way we were in the 1990s; hospital budgets slashed resulting in chronic under-funding; growing privatisation of  healthcare; medical staff leaving New Zealand; bureacratic management growing; and people like Rau Williams, Colin Morrison, and others dying on waiting lists… all while a National-led government blundered on.

Things became so bad that even medical professions like the Royal Australasian College of Opthalmologists took to placing advertisements in newspapers, absolving  themselves of all blame and responsibility for the country’s chaotic and collapsing health system,

.

Cataract surgery fact & fiction - advertisement - 6 October 1998

Cataract surgery fact & fiction – advertisement – 6 October 1998

.

And while medical professions around the country distanced themselves from National’s non-stop bungling, others were jumping in, keen to exploit people’s fears and uncertainties for profit,

.

Heartwatch Insurance Cover - advertisement - Otago Daily Times - 21 February 1998

Heartwatch Insurance Cover – advertisement – Otago Daily Times – 21 February 1998

.

If you feel uncertain about the future…”

Talk about manipulating people’s fears.

What sort of society were we becoming that the callous exploitation of people’s   misery was somehow acceptable behaviour?! Was this the path that New Zealand had taken?

Or was our collective disgust finally being voiced with this statement,

I get a sense that the public is saying in quite a specific way, enough’s enough, we can’t take any more, you’ve got to stop, you’ve gone to far.” – Ian Powell,  Association for Salaried Medical Specialists, on Health cuts by the National-led government, 1 November 1997

The Minister of Health at the time, Bill English, and his colleagues – many of whom are still in Parliament (like Tony Ryall) – have much  to answer for.  For this was their legacy.

It now appears that they have not learned the lessons of that dark decade.

.

Govt eyes cuts to elective surgery

Full story

.

Govt's proposed health cuts could affect children - Labour

Full story

.

Doubt over savings from restricting ear treatment

Full story

.

Oh dear lord, not again!!

It appears that National may be hell-bent of repeating it’s ghastly performance of the 1990s – especially the late ’90s, where people died as a result of the then-National-government’s ineptitude.

And didn’t we go through a similar exercise in reducing grommet operations for our children in 1997 and 1998?!?! Oh yes, we did.

The three Herald articles above repeat the same mantra over and over again,

The National Health Committee, which is responsible to Health Minister Tony Ryall, is trying to find $30 million of savings in the public health system for reinvestment in more effective or better-targeted treatments.

See: IBID

What  investment could possibly be “more effective or better-targeted “ than  treating glue ear in children???

What “investment” could be better than removing a potential barrier for children to learn at school – a barrier called deafness, caused by glue-ear?!

The so-called “National Health Committee” are not new to this kind of narrow, anti-social thinking. They’ve been around for quite a few years and were involved in National’s blundering healthcare “reforms” – policies which led to the needless deaths of Colin Morrison, Rau Williams, and others.

This media report in the “Sunday Star Times”, on 12 October 1997, illustrates the sort of repulsive “philosophy” which this nasty little ‘Quango’ comes up with, from time to time.

.

Move for sick to pay more - Sunday Star Times - 12 October 1997

Source: Sunday Star Times

.

Note the comments high-lighted in red,

Patient charges could be increased to pay for more health care, according to a draft report by the high-powered Government adviser the National Health Committee.

[…]

If user part-charges were high enough, the report said people’s ability and willingness to pay them would be a way of deciding which demands for publicly-funded services should be met.

Make no mistake. What these invisible, faceless, nameless bureacrats were suggesting to the then-National government was that raising “user part-charges” would deter certain classes of people from accessing the health service.

For example, if you were poor.  Or unemployed. Or a solo-parent. Or a pensioner. Perhaps Samoan or Maori. This was the power of the State being used to determine who lives and who dies – not on clinical grounds – but on your ability to pay.

The article goes on to state,

The report said funding for health and disability services should be directed at services which:

  • Showed good effectiveness or benefit with those standing to gain the most receiving services first.
  • Are the best value for public money.
  • Are a fair use of resources

[…]

It said people must be prepared to made trade-offs to achieve  a sensible mix of proven, cost-effective services.

I don’t know about the reader, but these remarks chill me to the bone. These are bean-counters giving advice to the Minister of Health; advice which measures outcomes according to “ the best value for public money” and if  “user part-charges were high enough…  people’s ability and willingness to pay them would be a way of deciding” who has access to life-giving medical care.

The only thing missing here is what do they advise we do with the corpses of people who did not have the  “ability and willingness to pay”  for “ high enough user part-charges“.

Perhaps ovens…? User-pays of course. With the bill for incineration being forwarded to next-of-kin…

Which leads us to the next question;

The “National Health Committee” – Who Are They?

Who are the so-called “National Health Committee” and what are their qualifications to be making recommendations on our healthcare system?

The Committee comprises of these kindly-looking folk,

.

NHC members

Source

.

Mrs Anne Kolbe

Chair

– specialist paediatric surgeon and an Associate Professor at the University of Auckland’s School of Medicine.

Dr Mark O’Carroll

– is a Respiratory Physician at Auckland City Hospital with subspecialty interests in Cystic Fibrosis, Lung Transplantation and Interventional Pulmonology.

Mr Craig Climo

– management.

Mr Ross Laidlaw

– retired corporate lawyer.

Ms Sharon Mariu

–  consultancy  in strategic and business development.

Mr Alex Price

– Chief Executive of Fertility Associates […] He holds a chemical engineering degree, an MBA from IMD, Switzerland and a graduate certificate in reproductive medicine from the University of New South Wales.

Source

Of the six committee members, only two have medical qualifications  as practititioners. The rest are ex-lawyers, bean-counters, pricey consultants, and business-types.

These are the bean-counters – faceless and nameless no more – who are now suggesting that savings in the country’s Health budget could be made by effectively stealing $30 million away from our children who need grommets for their ears.

The committee members – with their usual euphemisms – called the cost-cutting, “disinvestment“. I kid you not. See: Govt eyes cuts to elective surgery

So taking away a surgical procedure which gives our children a better chance at school – because they can actually hear what is being said in the classroom – is “disinvestment“?!

I call it naked selfishness and thieving from the vulnerable. So this is what the term “stealing candy from a baby” means.

I think every one of these “kindly-looking folk” should hang their heads in shame and resign their arses from this odious little quango. We have enough child poverty and poverty-related disease in this country without people like this lot, funded by us the taxpayer, adding to it with revolting policy-advice.

The New Year is just barely over a week old, and already we are reading stories of National’s intentions toward us and our children.

How many will suffer and/or die this time?

Addendum

Date:   Fri, 11 Jan 2013 at 1:45
From: Frank Macskasy <fmacskasy@yahoo.com>
Subject:Children’s Health: not a high priority for Health Minister Tony Ryall?
To: “Tony.Ryall@parliament.govt.nz” <Tony.Ryall@parliament.govt.nz>
Bcc: Chris Laidlaw RNZ <sunday@radionz.co.nz>,
“campbelllive@tv3.co.nz” <campbelllive@tv3.co.nz>,
Dominion Post <editor@dompost.co.nz>,
Daily News <editor@dailynews.co.nz>, Daily Post <editor@dailypost.co.nz>,
Hutt News <editor@huttnews.co.nz>, Jim Mora <afternoons@radionz.co.nz>,
“joanna.norris@dompost.co.nz” <joanna.norris@dompost.co.nz>,
Kim Hill <saturday@radionz.co.nz>,
“kate.chapman@fairfaxmedia.co.nz” <kate.chapman@fairfaxmedia.co.nz>,
Listener <editor@listener.co.nz>,
Morning Report <morningreport@radionz.co.nz>,
NZ Herald <editor@herald.co.nz>,
Nine To Noon RNZ <ninetonoon@radionz.co.nz>,
“news@dompost.co.nz” <news@dompost.co.nz>,
“news@radionz.co.nz” <news@radionz.co.nz>,
Otago Daily Times <odt.editor@alliedpress.co.nz>,
“primenews@skytv.co.nz” <primenews@skytv.co.nz>, Q+A <Q+A@tvnz.co.nz>,
Southland Times <editor@stl.co.nz>, TVNZ News <news@tvnz.co.nz>,
The Press <letters@press.co.nz>,
The Wellingtonian <editor@thewellingtonian.co.nz>,
“tracy.watkins@fairfaxmedia.co.nz” <tracy.watkins@fairfaxmedia.co.nz>,
Waikato Times <editor@waikatotimes.co.nz>,
Wairarapa Times-Age <editor@age.co.nz>,
“wellington.news@tv3.co.nz” <wellington.news@tv3.co.nz>

For the Health Reporter:

Children’s Health: not a high priority for Health Minister Tony Ryall?

https://fmacskasy.wordpress.com/2013/01/10/childrens-health-not-a-high-priority-for-health-minister-tony-ryall/

The “National Health Committee” recently recommended stripping $30 million from the Health budget by cutting back on grommet operations for our children. According to the NHC,  the insertion of grommets is the only elective procedure specifically targeted for “disinvestment”.

Question: Who are the “National Health Committee” ?

Question: What advice did they give to the National government in the late 1990s, which effectively would have meant high “part charges” for medical care, and more people dying needlessly?

Question: Did National try cutting back on grommet operations in the 1990s? What were the consequences?

Question: Why is the “National Health Committee” – an unelected quango that comprises of four business/consultant/lawyer-types and two actual medicos – giving advice to a government that might result in suffering and poor education outcomes for our children?

Question: why has a blogger demanded that the entire “National Health Committee” resign their arses out of that quango?

It’s surprising what one can uncover with a bit of digging around.

-Frank

Blogger

.

Cartoonconsult

.

.

*

.

References

Scoop: Tony Ryall – Reduction in State agencies confirmed

NZ Herald: Govt eyes cuts to elective surgery

NZ Herald: Doubt over savings from restricting ear treatment

NZ Herald: Govt’s proposed health cuts could affect children – Labour

NZ Herald: The Hobbit: should we have paid?

Dominion Post:  Children need changes now – commissioner

National Health Committee

Previous related blogposts

Priorities?

Terminal disease sufferer appeals to John Key

Health Minister circumvents law to fulfill 2008 election bribe?

Johnny’s Report Card – National Standards Assessment – Compassion

.

.

= fs =

Health Minister circumvents law to fulfill 2008 election bribe?

18 December 2012 40 comments

Continued from: Terminal disease sufferer appeals to John Key – Update & more questions

.

reaching-out-300x196

.

To re-cap,

Allyson Locke and a handful of other New Zealanders are suffering from Pompe Disease – a terminal condition. Their only hope is an expensive drug – Myozyme – which they cannot afford.

Allyson and her fellow Pompe sufferers have appealed to the Prime Minister for assistance.

They are appealing for equal treatment to breast cancer sufferers,  who gained extra funding for extended herceptin treatment, as part of John Key’s election campaign promise in 2008.

This blogger supports Allyson and her fellow pompe sufferers to plead for mercy from John Key.

Considering that Key and National found over $200 million to support last year’s rugby world cup tournament(Blowouts push public Rugby World Cup spending well over $200m), it is inconceivable that they cannot fund medicine which seven New Zealanders desperately require.

The alternative is death.

.

mum-not-prepared-to-wait-and-die

Full story

.

On 22 November 2012, Tony Ryall sent this response to the blog author,

.

email-tony-ryall-pompe-disease-22-nov-2012

.

In turn, on the same day, I emailed Mr Ryall with this correspodence,

.

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”
Cc: Chris Laidlaw RNZ <sunday@radionz.co.nz>,
    “campbelllive@tv3.co.nz” <campbelllive@tv3.co.nz>,
    Dominion Post <editor@dompost.co.nz>,
    Daily News <editor@dailynews.co.nz>, Daily Post <editor@dailypost.co.nz>,
    Grant Robertson <grant.robertson@parliament.govt.nz>,
    Hutt News <editor@huttnews.co.nz>,
    John Key <john.key@parliament.govt.nz>,
    Jim Mora <afternoons@radionz.co.nz>,
    “Joanna Norris ( DPT)” <joanna.norris@dompost.co.nz>,
    Kim Hill <saturday@radionz.co.nz>,
    “kate.chapman@fairfaxmedia.co.nz” <kate.chapman@fairfaxmedia.co.nz>,
    Listener <editor@listener.co.nz>,
    Morning Report <morningreport@radionz.co.nz>,
    NZ Herald <editor@herald.co.nz>,
    Nine To Noon RNZ <ninetonoon@radionz.co.nz>,
    “news@dompost.co.nz” <news@dompost.co.nz>,
    “news@radionz.co.nz” <news@radionz.co.nz>,
    Otago Daily Times <odt.editor@alliedpress.co.nz>,
    “primenews@skytv.co.nz” <primenews@skytv.co.nz>, Q+A <Q+A@tvnz.co.nz>,
    Southland Times <editor@stl.co.nz>, The Press <letters@press.co.nz>,
    The Wellingtonian <editor@thewellingtonian.co.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

.

Four days later, I received this response,

.

From: “Nicole Hine (MIN)” “Nicole.Hine@parliament.govt.nz”
To: Frank Macskasy “fmacskasy@yahoo.com”
Subject: RE: Pompe Disease sufferers: A request for mercy
Date:  Monday, 26 November 2012 9:14 AM

Dear Mr Macskasy

On behalf of Hon Tony Ryall, Minister of Health, thank you for your further email of 22  November 2012 about ERTs.

The Minister has asked Ministry of Health officials to advise him on the matters you have raised.  Please be aware that due to the large volume of correspondence we receive, a personal reply to your letter may take some weeks.

Kind regards

Nicole Hine
Private Secretary – Health
Office of Hon Tony Ryall

.

*** Up-Date ***

Finally, Mr Ryall’s response, dated 5 December was as follows,

.

email-tony-ryall-pompe-disease-5-dec-2012

.

It is interesting to note the following comments from Mr Ryall,

1. “… in December 2008, the Government decided to fund herceptin outside the PHARMAC model

[…]

The 12 month course of Herceptin was funded directly by the Ministry of Health…”

As Ryall stated in his 22 November correspondence,

I am prevented by law from intervening in PHARMAC’s decision-making process.”

But by “tapping” into the Ministry of Health’s budget, this allowed National to circumvent the  legislation surrounding PHARMAC’s independence and sideline that organisation entirely. In effect, the Ministry was turned into a giant “slush fund”, to allow National ministers to pay for their election bribes promises.

Allyson Lock and her six fellow Pompe disease sufferers could be funded by precisely the same means; directing the Ministry of Health to purchase the Enzyme Replacement Therapy (ERT) necessary to keep them alive.

But it’s not an election year.

The Minister’s final statement was that “… in the current fiscal environment, unfortunately funding is not available for all treatments.”

It seems paradoxical that whilst National ministers cannot afford life-saving medicine “in the current fiscal environment“, that they have found funding for the following;

  • $1,400 spent on a limousine hire for two days (Source)
  • $2,000 per day spent on a “Special advisor” to Bill English (Source)
  • $453,450  (conservative estimate)  spent on parties, welcomes, farewells, and other booze-ups  (Source)
  • $500,000 from this Government’s Major Events Development Fund spent on a  NZPGA Pro-Am Championship tournament held earlier this year  (Source)
  • $3.1 million spent by members of Parliament on airfare and accomodation in just three months,  (Source)
  • $4 million spent by Tourism New Zealand  to attract China Southern Airlines to New Zealand (Source)
  • $20 million spent on advertising by the NZ Defence Force (Source)
  • $21.9 million spent by  Treasury on consultants in 2012-13  (compared to $2 million in 2007-08), including  $20,000 paid to Cato Partners NZ to redesign the Treasury website and  $37,000 paid to Bill Ralston and Janet Wilson for media training  (Source)
  • $54 million spent by state owned enterprises  on “performance bonuses” to their employees (Source)
  • $75 million spent from 2009-11 to movie studios in taxpayer funded subsidies (Source)
  • $120 million in  subsidies paid to Warner Bros to produce “The Hobbit” in NZ (Source)
  • $220 million spent on the Rugby World Cup (Source)
  • $300 million subsidies spent on the Lord of the Rings trilogy (Source)
  • $910.5 million spent from 2008 to September 2012,  on consultants (Source)

If the  above list shows anything, it is that National can find money (or subsidies) when it wants to.  There appears to be no restraint due to “the current fiscal environment.

And yet, perhaps “the current fiscal environment” is not as bad as Mr Ryall makes out – especially in the health sector,

.

Pharmac 'saved DHBs billions' in medicine costs

Source

.

Another attempt to persuade the Minister to see the logic of this situation,

.

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 e vents 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 indsustry, 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

.

After one week, no response – or even acknowledgement – has been received by this blogger to the above email. The Minister appears to have ‘gone to ground’ on this issue.

It seems fairly clear to this blogger,

  1. When National wants  something – it will find the necessary money required.
  2. This is not a matter of available funding, but rather one of political will (or lack of).
  3. There seems no difference between funding herceptin for breast cancer sufferers in 2008, and  funding medication for Pompe Disease sufferers.

If money was available from the Ministery of Health (thereby circumventing the law preventing Ministerial direction of PHARMAC to purchase specific medicines), then one has to wonder why Ryall does not employ the same mechanism for Pompe disease sufferers?

One wonders  how the Prime Minister and Tony Ryall decided that breast cancer sufferers merited life-saving drugs – but Pompe disease sufferers do not deserve equal assistance.

One thing is for certain; the intransigence of Tony Ryall and John Key will have life-threatening consequences for Allyson Locke and many others in this country.

 

.

.

= fs =

Terminal disease sufferer appeals to John Key – Update & more questions

28 November 2012 20 comments

Continued from: Terminal disease sufferer appeals to John Key

.

https://fmacskasy.files.wordpress.com/2012/11/reaching-out-300x196.jpg

.

To re-cap,

Allyson Locke and a handful of other New Zealanders are suffering from Pompe Disease – a terminal condition. Their only hope is an expensive drug – Myozyme – which they cannot afford.

Allyson and her fellow Pompe sufferers have appealed to the Prime Minister for assistance.

They are appealing for equal treatment to breast cancer sufferers,  who gained extra funding for extended herceptin treatment, as part of John Key’s election campaign promise in 2008.

This blogger supports Allyson and her fellow pompe sufferers to plead for mercy from John Key.

Considering that Key and National found over $200 million to support last year’s rugby world cup tournament(Blowouts push public Rugby World Cup spending well over $200m), it is inconceivable that they cannot fund medicine which seven New Zealanders desperately require.

The alternative is death.

.

Full Story

.

Following on from a previous blogpost (Terminal disease sufferer appeals to John Key) on 12 November, the following exchange of emails between this blogger; John Key’s office; and Tony Ryall, has taken  place.

Email sent to the Prime Minister on 11 November,

.

Date: Sun, 11 Nov 2012 17:34:10 -0800 (PST)
From: Frank Macskasy “fmacskasy@yahoo.com”
Subject: A request for mercy
To: John Key “john.key@parliament.govt.nz”
Cc: Allyson

Kia ora Mr Key,

Allyson Lock, has contacted you via your Facebook page. Allyson suffers from  Pompe Disease  a terminal disease, requiring a  medication. The cost of that medication is beyond her means.

Her case is outlined here: https://fmacskasy.wordpress.com/2012/11/12/terminal-disease-sufferer-appeals-to-john-key/

Allyson has appealed to Pharmac for funding to treat her and six other New Zealanders who also suffer from this extremely rare condition. Pharmac has rejected her on the grounds of cost and efficacy.

I would like to  remind you that in 2008, one of your election promises was to extend herception 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. You subsequently won the election and carried through with your pledge to fund herceptin to twelve months.

Allyson is requesting that you offer her, and six others in her position, the same opportunity to treat her condition.

I request that you take her pleas seriously and respond to her request.

Her life is in your hands.

Regards,

-Frank Macskasy

Blogger

.

Response from John Key’s office, five days later,

.

From: “J Key (MIN)” “J.Key@ministers.govt.nz”
To: Frank Macskasy “fmacskasy@yahoo.com”
Subject: RE: A request for mercy
Date:  Friday, 16 November 2012 3:52 PM

Dear Mr Macskasy

On behalf of the Prime Minister, Rt Hon John Key, I acknowledge your email of 12 November 2012. Please be assured your comments have been noted.

As the issue you have raised falls within the portfolio responsibility of the Minister of Health, Hon Tony Ryall, your email has been forwarded to his office for consideration.

Thank you for taking the time to write to the Prime Minister.

Regards

L Diehl

.

Tony Ryall’s response, dated 22 November, and sent via email by his Private Secretary,

.

.

Follow-up email to Tony Ryall,

.

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”
Cc: Chris Laidlaw RNZ <sunday@radionz.co.nz>,
    “campbelllive@tv3.co.nz” <campbelllive@tv3.co.nz>,
    Dominion Post <editor@dompost.co.nz>,
    Daily News <editor@dailynews.co.nz>, Daily Post <editor@dailypost.co.nz>,
    Grant Robertson <grant.robertson@parliament.govt.nz>,
    Hutt News <editor@huttnews.co.nz>,
    John Key <john.key@parliament.govt.nz>,
    Jim Mora <afternoons@radionz.co.nz>,
    “Joanna Norris ( DPT)” <joanna.norris@dompost.co.nz>,
    Kim Hill <saturday@radionz.co.nz>,
    “kate.chapman@fairfaxmedia.co.nz” <kate.chapman@fairfaxmedia.co.nz>,
    Listener <editor@listener.co.nz>,
    Morning Report <morningreport@radionz.co.nz>,
    NZ Herald <editor@herald.co.nz>,
    Nine To Noon RNZ <ninetonoon@radionz.co.nz>,
    “news@dompost.co.nz” <news@dompost.co.nz>,
    “news@radionz.co.nz” <news@radionz.co.nz>,
    Otago Daily Times <odt.editor@alliedpress.co.nz>,
    “primenews@skytv.co.nz” <primenews@skytv.co.nz>, Q+A <Q+A@tvnz.co.nz>,
    Southland Times <editor@stl.co.nz>, The Press <letters@press.co.nz>,
    The Wellingtonian <editor@thewellingtonian.co.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

.

Response from Tony Ryall’s office on  26 November,

.

From: “Nicole Hine (MIN)”   “Nicole.Hine@parliament.govt.nz”
To: “fmacskasy@yahoo.com” “fmacskasy@yahoo.com”
Subject: RE: Pompe Disease sufferers: A request for mercy
Date: Monday, 26 November 2012 9:14 AM

Dear Mr Macskasy

On behalf of Hon Tony Ryall, Minister of Health, thank you for your further email of 22  November 2012 about ERTs.

The Minister has asked Ministry of Health officials to advise him on the matters you have raised.  Please be aware that due to the large volume of correspondence we receive, a personal reply to your letter may take some weeks.

Kind regards

Nicole Hine

Private Secretary – Health

Office of Hon Tony Ryall

.

Let us hope that common sense, mixed with compassion, prevails.

This issue will be updated when new information, or events, come to hand.

.

*

.

Sources

John Key: Government honours Herceptin promise (10 Dec 2008)

Tony Ryall: 12-month Herceptin treatment now available (10 Dec 2008)

Additional

Drug trial gives hope to Pompe sufferer (1 Dec 2012)

.

.

= fs =

Letters from Parliament…

Following on from this Blog’s promotion of the Million Mail campaign (see previous blogpost: Campaign: Flood the Beehive!), several responses from National politicians have been forwarded to me.

The first two seem fairly innocuous fob-offs,

.

John Key state asset sales SOEs

.

Tony Ryall state asset sales SOEs

.

But this following letter, and enclosed literature, is more interesting.

First, the covering letter,

.

.

The letter seems fairly innocuous, like the two above – even with the statement “National will continue to work tirelessly to deliver on our plan to build a brighter future for all New Zealanders” (bottom of letter), which appears to be a Party-political statement. That would be illegal if the letter was paid by taxpayer-funded Parliamentary Services funding allocations.

The following literature, that was enclosed with the above covering letter, is more cause for concern,

.

.

The first, of four pages, contain some blatant mis-representations, half-truths, and a fair measure of hypocrisy.

1.

Delivering a better public service

It is debateable if National is delivering “better public services” with 2,500 jobs lost through sackings; pared-back services such as MAF Border controls; low Army morale; naval staff shortages resulting in uncrewed ships; unanswered phones at IRD and Housing New Zealand, etc, etc…

See previous blogpost: Another case of “We told you so!”?

In fact, it might be argued that National’s budget cuts and mass-redundancies have left our state sector in a run-down, demoralised, over-stretched state.

But in National’s alternative Universe, all these problems constitute “better public services”.

2.

New Zealand is in good shape…”

“Good shape” depends on whether John Key is comparing us to Greece, Somalia, and Tonga – or Australia.

Considering that,

None of these issues are covered  in National’s brochure. In fact, Bill English sez “we’re doing alright.

3.

Operating in surplus helps keep mortage rates lower for longer

That statement is so disingenuous that it is nothing more than an outright lie.

A. National has not been “in surplus” since Labour lost the election in 2008.

B. Mortgage interest rates are determined by the Reserve Bank and corporate banks – not by government.

C. Interest rate are dependent several factors such as the OCR set by the Reserve Bank (independepent of government); overseas interest rates; New Zealand’s credit rating (the lower our rating, the higher  interest rates we pay); our Balance of Payments; private debt; and lastly, sovereign debt.

D. Interest rates are currently low because the country’s economy is stagnating; there is poor economic growth; and hence banks are lowering their rates to attract new customers.

For John Key to claim some sort of  “ownership” over low interest rates is unsurprising.

He has nothing else to claim as “good news”.

Dear Leader has as much to do with keeping interest rates down as King Canute did in commanding the tide to retreat.  Didn’t that end well?

4.

See #3 above: more pure, unadulterated bullshit.

I haven’t read propaganda like this since the Soviet Union’s last 5 Year Plan to over-take the United States in economic growth. That didn’t end well either.

Let’s check out National’s bold claims for New Zealand’s growing neo-liberal nirvana,

“... employ more people,”

Not according to the latest job-market statistics, released in early May,

New Zealand’s unemployment rate unexpectedly rose to 6.7pc in the first quarter after the labour force swelled to a three-year high as more people started looking for work in what’s been a tight jobs market. The kiwi dollar fell after the data was released.

The unemployment rate rose 0.3 percentage points to 6.7 per cent in the three months ended March 31, from a revised 6.4 per cent in the prior quarter, according to Statistics New Zealand’s household labour force survey. That’s higher than the 6.3 per cent forecast in a Reuters survey of economists. “

See: Unemployment rate lifts to 6.7pc

And businesses seemed to have their own ideas, a month previous,

New Zealand finance bosses are feeling good about the economic recovery, but research shows that optimism doesn’t extend to hiring new staff.

Global finance and accounting firm Robert Half’s survey of 200 chief financial officers and finance directors found 79 per cent were confident about the prospects of national growth in 2012.

Those who thought their own company would pick up speed in the year ahead made up an even higher proportion, at 87 per cent. “

See: Confidence up, but jobs still not a priority

We are encouraging businesses to grow through having confidence to invest…”

Oh well, at least business confidence was up.

Oh, wait, no…

Sorry, that’s changed now,

Business confidence has fallen for the first time in seven months, though National Bank’s latest survey shows confidence is still “very healthy”.

A net 27 per cent of firms expect business conditions to improve in the coming year down from 35.8 per cent in the previous month.

See: Business confidence down but resilient

Not looking terribly good for Dear Leader, is it?

“… pay them higher wages,”

Well, it’s true that Dear Leader has promised us higher wages,

“We will be unrelenting in our quest to lift our economic growth rate and raise wage rates.” – John Key, 29 January 2008

We will also continue our work to increase the incomes New Zealanders earn.” – John Key, 8 February 2011

The driving goal of my Government is to build a more competitive and internationally-focused economy with less debt, more jobs and higher incomes.” – John Key, 21 December 2011

But, like most of his promises, they’ve either been broken, ignored, or “postponed” into the never-never,

New Zealand families are under growing financial stress as stagnating wages and salaries prove inadequate to cover spiralling costs – and even top-tier earners are feeling the squeeze.

According to Statistics New Zealand’s Household Income Survey, 29,200 more families now rate themselves as having incomes too low to meet their daily needs than in the same survey four months before John Key’s first term.

In June 2007, the number of households rating themselves income-poor was 254,100. That number has now risen to 283,300. “

See: NZ families feel the income squeeze

In  2008, wages (LCI)  increased by 3.4% for the March Quarter.

See: Salary and wage rates increase by record amount

By 2012, wages (LCI)  increased for the March Quarter by only  2%.

See: Wage Growth – March 2012 Quarter

Which is a marked improvement from only two years ago,

Statistics New Zealand’s latest Labour Cost Index showed salaries and wages increasing at their slowest rate in eight years, up 1.8 per cent in the year to the December quarter. It was the lowest quarterly increase since June 2001. “

See: Wage rises lowest since 2001

At the same time, the top 150 Rich Listers  have done extremely well,

The fortunes of the country’s 150 richest people have grown by almost 20 per cent in one year but they are still calling for the easing of constrictions around wealth creation.

The National Business Review yesterday published its annual Rich List, showing that the combined wealth of New Zealand’s richest has ballooned from $38.2 billion to $45.2 billion – the highest total ever. “

See: Rich Listers enjoy 20pc increase in wealth

Considering that rest home careworkers are still living on $13.61 an hour (perhaps marginally more), and that John Key denied these lowpaid workers a decent wage-increase, National’s committment to raising peoples’ pay is questionable. Especially when Dear Leader stated,

It’s one of those things we’d love to do if we had the cash. As the country moves back to surplus it’s one of the areas we can look at but I think most people would accept this isn’t the time we have lots of extra cash.

See: PM: No money for aged care workers

Which is rather ‘curious’, as National clearly has a spare $336 million to spend on consultants, and various “fees” for selling our own state assets to bogus “mums and dads”  (aka,  corporate investors)

See previous blogpost: Roads, grandma, and John Key

Furthermore, when workers go on strike to protect their current working conditions and pay-rates, as the recent Ports of Auckland dispute showed, National’s fellow-travellers are only too pleased to ‘put the boot‘ into them. In fact, National’s allies and at least one MP claimed that POAL workers were “over-paid”.

How can we raise wages in this country if the right wing are constantly resisting and even actively  attacking initiatives that would result in raising incomes and our standard of living?

Eventually, POAL workers defeated their employers attempt to casualise (and reduce their pay) the workforce – but only because of massive community support for the courageous men who work our wharves.

Far from raising wages to bridge the gap with Australia – Australia is bridging the gap with us…

“… creating a more productive and competitive economy.”

Not sure about productive, but Key has made us “a more… competitive economy” – but not in the way we thought was a good way,

Woolworths Australia this week moved a contact centre to Auckland, citing lower costs among the benefits, following similar expansion plans for cigarette manufacturing, food processing and media work to New Zealand.

“Labour does not want New Zealand to become Australia’s Mexico,” said the party’s finance spokesman, David Parker, criticising the influx of lower value jobs. ..

[abridged]

Macquarie University’s centre for workforce futures director, Ray Markey, said the pressure would continue as the mining boom pushed up wages and costs in Australia.

It was easy for Australian businesses to shift some operations to New Zealand because of the two countries’ many similarities, he said.

“I don’t think a low-wage economy is a way to go for the future, and it’s not going to help increase productivity… I wouldn’t want a call centre-based economy,” Dr Markey said. “But I’m much more optimistic if manufacturing is shifting“. “

See: Aussie firms sending business across ditch

And thus Bill English’s vision of a low-wage economy came to pass, when on 10 April 2011, he openly enthused over New Zealand’s low-wage economy compared to Australia,

GUYON Can I talk about the real economy for people?  They see the cost of living keep going up.  They see wages really not- if not quite keeping pace with that, certainly not outstripping it much.  I mean, you said at the weekend to the Australia New Zealand Leadership Forum that one of our advantages over Australia was that our wages were 30% cheaper.  I mean, is that an advantage now?

BILL Well, it’s a way of competing, isn’t it?  I mean, if we want to grow this economy, we need the capital – more capital per worker – and we’re competing for people as well.
 
GUYON So it’s part of our strategy to have wages 30% below Australia? 

BILL Well, they are, and we need to get on with competing for Australia.  So if you take an area like tourism, we are competing with Australia.  We’re trying to get Australians here instead of spending their tourist dollar in Australia.

GUYON But is it a good thing?

BILL Well, it is a good thing if we can attract the capital, and the fact is Australians- Australian companies should be looking at bringing activities to New Zealand because we are so much more competitive than most of the Australian economy.

GUYON So let’s get this straight – it’s a good thing for New Zealand that our wages are 30% below Australia?

BILL No, it’s not a good thing, but it is a fact.  We want to close that gap up, and one way to close that gap up is to compete, just like our sports teams are doing.  This weekend we’ve had rugby league, netball, basketball teams, and rugby teams out there competing with Australia.  That’s lifting the standard.  They’re closing up the gap. 

GUYON But you said it was an advantage, Minister.

BILL Well, at the moment, if I go to Australia and talk to Australians, I want to put to them a positive case for investment in New Zealand, because while we are saving more, we’re not saving more fast enough to get the capital that we need to close the gap with Australia.  So Australia already has 40 billion of investment in New Zealand.  If we could attract more Australian companies, activities here, that would help us create the jobs and lift incomes.

See: TVNZ Q+A Bill English interview Transcript

Not looking too good for National, thus far…

5.

.

.

Two Dear Leaders. Propaganda. ‘Nuff said.

6.

In Budget 2012 we’ve allocated the first $558 million of the proceeds of mixed ownership. We’re modernising schools ($34m), upgrading hospitals ($69m), supporting infrastructure such as Kiwirail ($250m), and research through the new Advanced Technology Institute ($76m). Over the next few years, $1 billion of the [Future Investment]  fund will be invested in New Zealand schools.

One of National’s oft-quoted spin-rhetoric is that the partial-sale of five state assets is to invest in new state assets,

Those points around companies operating more efficiently and effectively have been well made by the Government, as has the view that we’d like to see New Zealanders investing more in their country and the fact that we want to buy new assets without having to incur more debt. I think those points have been made”. ” – John Key, 19 July 2012

See: Key defends asset sales policy promotion

This is a lie.

National is not investing in “new assets”. They are spending on maintenance,

...We’re modernising schools ($34m), upgrading hospitals ($69m), supporting infrastructure such as Kiwirail ($250m)

There is a difference.  This blogger has some degree of business experience, and understands the difference between capital expenditure (aka “capex”)  and maintenance expenditure.

A. Capital investment: purchasing a new fishing boat, to add to a fleet, to generate addition income.

B. Maintenance: regular painting; cleaning;  motor and equipment maintenance, to keep existing income-generation.

As the astute reader will understand,  Capital Investment involves purchasing a new item which contributes to increasing turnover for a business.

Maintaintenance (or modernising, upgrading, and supporting infrastructure)  is just that;  keeping existing items up to operating standards.

So when Dear Leader, Bill English, Steven Joyce, Tony Ryall, et al, claim that National is selling state assets to buy new state assets – they are willfully misrepresenting their actions.

Building a new school is a capital purchase (a new state asset).  Slapping a lick of paint on an existing school is not a new state asset – it’s whacking a coat of Dulux on an existing building.

Key, English, and Joyce know this.  All three have  been involved in finance or business in one way or another.  But it suits their purpose to perpetrate this “spin”, to make it look as if we are replacing “Asset A” with “Asset B”.

They are doing no such thing.

The reason that National is now having to partially-privatise five SOE’s is that they lost an estimated $2 billion in tax-revenue, per annum,  after cutting taxes in 2009 and 2010. After considerable research, the Green Party discovered,

The Green Party has today revealed that the National Government has so far had to borrow an additional $2 billion dollars to fund their 2010 tax cut package for upper income earners.

New information prepared for the Green Party by the Parliamentary Library show that the estimated lost tax revenues from National’s 2010 tax cut package are between $1.6-$2.2 billion. The lost revenue calculation includes company and personal income tax revenues offset by increases in GST.

“The National Government said that their signature 2010 income tax cut package would be ‘fiscally neutral’ — paid for increased revenues from raising GST. That hasn’t happened. The net cost for tax cuts has been about $2 billion,” Green Party Co-leader Dr Russel Norman said today.

“Borrowing $2 billion in 18 months to fund upper-income tax cuts is fiscally irresponsible.

“National’s poor economic decisions have led to record levels of government debt and borrowing. “

See: Government’s 2010 tax cuts costing $2 billion and counting

According to a Treasury report,

The Budget deficit is running $1.2 billion worse than forecast as tax revenue continues to lag.

Treasury today released the Government’s financial statements for the eight months to the end of February showing an operating deficit of $8.8 billion.

See: Budget deficit keeps getting worse

Considering that the tax cuts benefitted high-income earners the most, what we have here is that,

  • National cut taxes in 2009 and 2010
  • National is now having to flog off our state assets to pay for maintenance that otherwise would have been paid out of taxation
  • The people of New Zealand are paying for tax-cuts through the loss of their assets
  • The richest are benefitting the most from this wealth-transfer.

If you’re starting to feel angry about now, rest assured that is a normal response. After all, who likes being ripped of?

Pass the paint brush, please, Mr Key?

.

.

7.

Welfare will always be there for those in genuine need but too many New Zealanders are welfare dependent, trapping families in work. We believe those who can  work should work. We’re investing $287.5 million to break long term dependence blah blah blah...”

This is dog-whistle politics geared toward the Uninformed and Intolerant. It is not based in fact – it is based purely on prejudice.

Welfare dependent“?

Breaking long term dependence“?

Those who can work should work“?

When National’s economic performance is criticised – John Key reminds us that they inherited a Global Financial Crisis and the resultant Great Recession.

But that doesn’t stop National from blaming welfare recipients for being out of work. Some actual facts here may help,

In four years, unemployment has DOUBLED since National became government.  We should ask Dear Leader why this has happened.  There are three possible causes,

  1. A global recession has resulted in a sharp rise in unemployment
  2. National’s policies has caused unemployment
  3. 83,000 New Zealanders  chucked in their jobs and decided that getting a benefit of $204.96 was better than earning the average wage of $1,016.95. Go figure.

Perhaps we should let Welfare Minister Paula Bennett provide the answer,

No. There’s not a job for everyone that would want one right now, or else we wouldn’t have the unemployment figures that we do. ” – Paula Bennett, 29 April  2012

See:   Q+A: Paula Bennett interview

It seems fairly clear. There’s nothing quite like engaging in a bit of bene-bashing to win support in Voter Land.  National has no hesitation in using the victims of the global financial crisis to make itself look “tough on welfare beneficiaries”.  Meanwhile, National uses the same global financial crisis as an excuse for it’s own unimpressive economic performance.

8.

Budget 2012 includes $101 million of extra funding over the next four years for 4000 more elective operations a year, faster access to important scans and test results, and better cancer support services.”

Anything to do with “better cancer support” is an instant vote-winner. It almosts succeeds in putting a “human face” on National’s neo-liberal, “small government”, policies.

Until we read this,

To help meet cost pressures and fund these new initiatives, the Government will increase the $3 prescription charge to $5 per item, up to a maximum of 20 items, after which items are free...”

So to pay for cancer patients; other sick people, including children over 6 will be paying more for their medicines?!

When we have 200,000 children living in poverty; going to school without shoes or food; and living in cold, damp, rundown housing – charging more for medicine is the height of inhuman cruelty. There are families in this country for whom $5 might as well be $5,000 – threy simply don’t have the money.

Scrub my earlier reference to putting a “human face” on National.

9.

“… We’ve hired over 2000 extra nurses and and 800 extra doctors while there are 1000 few back-office staff.”

Really?

So who’s doing the paperwork? Who is keeping patient records up-to-date? Who is handling every day matters such as procurements? Invoices and bill-paying? Salaries? Rosters?  Equipment requisitions and maintenance?  Building maintenance? Personnel issues? Appointment-making? Contacting patients? Etc, etc?

Let me guess – each of those 2,000 “extra nurses” and 800 “extra doctors” have their own desks and share of paperwork to complete?

10.

In the tertiary sector we’re re-balancing our investment between student support and future tuition and research.  This will see student loans repaid faster and student allowances restricted to the current 200 week maximum. We’ll re-invest the savings into improving quality in the tertiary sector, especially in our universities.”

That’s a whole lot of meaningless blah, blah, blah… with the exception of this slipped into the rhetoric,  “…and student allowances restricted to the current 200 week maximum.

With a stroke of a Minister’s pen, 5,000 students are denied student allowances to undertake their postgraduate study.

National talks about upskilling; having a modern, educated workforce – and then pulls the rug out from under students. And this is not the first time National has done this kind of thing.

Aside from cutting the Training Incentive Allowance, National has also,

It seems fairly obvious that far from ” re-investing the savings into improving quality in the tertiary sector “, National has been making sly cuts as part of their maniacal obsession with “balancing the books’ and returning to surplus by 2014/15.

Unfortunately,  our children are paying for it through their education.

11.

Our National Standards are keeping parents informed about their child’s progress and identifying  kids falling behind. Experts are working with schools and teachers to help raise the bar…”

Bollocks.

National Standards does nothing of the sort.

National Standards are an ideological construct leading ultimately to League Tables, and the social stratification of our schools. Ghettoisation follows soon after.

As for  “experts are working with schools and teachers to help raise the barthat has to be the most absurd claim on this entire leaflet.

What “experts”?

Who could possibly be more “expert” than our teachers and principals?!

New Zealand has consistantly ranked high on the  OECD PISA Rankings. We are in the top six of nations.

The United States – from whence National is ‘borrowing’ much of it’s ideological claptrap such as Charter Schools, ranks number 15 – with Poland.

National can take no credit for this, and has even tried undermining many of the  excellent achievemant New Zealand has built up in the last decade.

It’s attempt to slash teacher numbers and increase class sizes in State schools was a potential recipe for disaster.

Meanwhile, John Key’s children were attending private schools.

12.

To meet these targets, we need to lift quality teaching and leadership across the education system.”

Call me cynical, but whenever I read rhetoric like this from National, it sends a chill down my back. “Lifting quality” is usually code for some nasty right-wing policy that usually involves cost-cutting, user-pays, and some manner of  private-commercial involvement.

So far all we’ve seen from National involves,

  • plans to cut teacher numbers (cancelled)
  • plans to increase classroom sizes (cancelled)
  • Charter schools involving private companies (School for Burger King?)
  • League Tables
  • National Standards

All of it based on right wing ideology. Parents should be very afraid – National is planning to use our schools to implement American-style ideological policies.

Which begs the question why we would want that? Remember that the US is far below NZ on the OECD PISA rankings.

Why are we not following Finland instead, which remunerates it’s teachers very well?

Should we ask Gerry Brownlee?

Maybe not.

13.

And in Budget 2012 we are investing a record $9.6 billion across ECE and schooling – the most ever.”

How can National be spending “the most ever”, when Bill English has declared the 2012 Budget to be a “zero” budget?! National insists they are not spending a cent more than last year?

In which case, what has National been cutting?

We do know one thing that National has cut,

One of the smaller Budget moves removes a tax credit on schoolchildren’s incomes, supposedly to reduce compliance costs for the employers of youngsters with part-time jobs.

It is forecast to save the Government $14 million a year, but Labour has described it as “picking the pockets of paper boys”.

See: Budget: Our big fat zero Budget

Taxing kids on a paper run…

Charming.

14.

We’re spending $14.12 billion this year on our public health service – the most ever.”

Ditto above. When National gives with one hand – you can bet your booties they’ve taken from somewhere else, with the other.

Keep your hand on your wallet.

15.

National is focused on raising achievement through quality teaching…”

In which case, National should consider proper resourcing of schools; increasing training for young unemployed (15-19); raising salaries for teachers – and abandon the lunatic right wing agenda it has borrowed from the United States.

If National is serious about raising achievement, we should be following Finland – not the US.

Charter Schools do not offer the success that National would have us believe. Even our American cuzzies are starting to realise this.

See: Denver Post –  Charter schools, They’re not better for our kids

See: New Stanford Report Finds Serious Quality Challenge in National Charter School Sector

.

.

16.

None of the above claims are easily verifiable. Taking into consideration that most of the “statements of fact” on the above pages are spin, rhetoric, and of dubious accuracy, one would be wise to take all statements in #16 with a significant quantity of salt grains…

.

.

17.

More children in early childhood education,  especially in areas of highest need.”

This would be a positive move by National. But to achieve it, there has to be adequate funding – and this is not happening. Under National, it has budgetted for a nil increase in funding, and not taken inflation nor wage increases into account,

Early childhood education subsidy cuts worth tens of millions of dollars are likely to be passed on to some parents through increased fees.

Education Minister Hekia Parata has kicked a total revamp of ECE funding into a future Budget, opting instead to stop cost increases to the Crown by cancelling the annual upward inflationary adjustment in rates.

The subsidy freeze takes effect on the next funding round, stripping about $40 million out of ECE payments to 5258 ECE centres. About 1427 of those centres are eligible for “equity funding,” however, and will get a boost through $49m extra directed to them over four years in a bid to enrol more children from the lowest socio-economic parts of the country.

But the scrapping of an annual inflationadjustment for other centres will be an effective funding cut as inflation pushes the cost of running ECE centres up. “

See: Parents face burden of preschool squeeze

National is adept at saying one thing – whilst doing something completely the polar-opposite.

And politicians wonder why we don’t trust them?!

18.

Rolling out ultra-fast broadband and investing in roads and rail.”

Two things:

A. If our economy is now a free market, where the State no longer owns Telecom, and subsidies went out in the late 1980s…

… why are we – the Taxpayer -funding private telco companies to lay down broadband in this country? Shouldn’t this be left up to private enterprise to fund?

Or is this indicative of yet again private enterprise unable to meet nationally-set goals to build infra-structure, and instead reliant on the State?

Seems like it.

B. If National is “investing in rail” – why are they continually knocking back Auckland’s attempt to build new rail infra-structure?!?!

After overseeing a record seven million public transport passenger trips in March, the organisation fears having to cut service costs by $31.2 million in the next financial year because of savings sought by its two main funders, the Auckland Council and the Government’s Transport Agency.

A capital projects wish-list of $674 million of public transport infrastructure and local roading proposals inherited from Auckland’s former regional, city and district councils will also have to be hacked back after a gloomy Government subsidy forecast…

[abridged]

… Transport Minister Steven Joyce, who in 2009 ditched a proposed regional fuel tax for Auckland public transport projects, has in this election year cited continuing tight economic conditions in postponing a planned 1.5 cent-a-litre rise on petrol excise. “

See: Public transport faces subsidy cuts

In May last year, then-Minister of Transport Steven Joyce said the case for building the rail link had not been proven. “

See: $8m boost given to city rail link

It came to a head just over a year ago when Transport Minister Steven Joyce rejected an Auckland Council report claiming a stunning $3.50 cost benefit for every $1 invested in its proposed city rail loop.

The Government, which opposes the loop, demanded that Government boffins do the sums again. They did, with predictably less flattering results. But before that, up popped a secret independent analysis of the Puhoi to Wellsford highway commissioned by the Government which showed a cost-benefit ratio of 0.4, which meant for every dollar invested the return was only 40c.

In other words, if the politicians were to put the political clamour of their supporters to one side, the holiday highway was a non-starter. “

See: The big winners from cost-benefit studies

It appears that National does not want Len Brown to succeed in any public transport initiatives?

19.

Tougher sentencing, parole, and bail laws.”

Oh god, not that hoary old “tough-on-crime” chestnut again?! Hasn’t that been thrashed to death?

And didn’t Bill English admit that,

”  Prisons are a fiscal and moral failure. And building more of them on a large scale is something I don’t think any New Zealander wants to see. They want a safer community and they want protection from the worst elements of criminal behaviour, but they don’t want to be a prison colony … It’s the fastest rising cost in government in the last decade and my view is we shouldn’t build any more of them. “

See: The problem with prisons

Firstly, it take guts for a Tory politician to be so candid and forthright on such a basic, dog-whistle, issue. Kudos to Bill English for his honesty on this matter.

Secondly, if  National politicians are indeed aware that prisons are such a failure, then promoting harsher sentences and other “tough-on-crime” rhetoric is  nothing more than sheer dishonesty. It is a cynical, deceptive manipulation of the public’s fear of victimisation by random criminal acts.

It is dishonest. It is manipulative. In fact, it could be called criminally irresponsible

20.

Reforming local government.”

“Reform”? In what way?

Does it need reforming?

Is there something wrong with local government that demands the question to be asked?!

It is a vague question that has no clear purpose, and utterly meaningless.

21.

Reducing long-term welfare dependency, with a focus on work.”

Oh, here we go again…

Aside from the fact that this is a repugnant, loaded question – shouldn’t we be asking,

A. Where are the jobs?

B. Didn’t John Key pledge the creation of 170,000 new jobs?

C. Why isn’t National “focused on work” – as in creating jobs?

Blaming beneficiaries – many of whom were in paid employment  not too long ago – is like blaming the office cleaner at Lehmann Bros for it’s bankruptcy and collapse.

In asking this “question”, National isn’t seeking an answer. It is pushing a subtle, subliminal message that beneficiaries are on “long-term welfare dependency“.

As Paula Bennett herself said,

No. There’s not a job for everyone that would want one right now, or else we wouldn’t have the unemployment figures that we do.

The real tragedy is that far too many low-information voters actually believe National’s rubbish.

22.

Selling minority shares in four energy SOEs and Air  New Zealand.

Not only is this the only honest question that is not loaded or framed in a pre-determined manner – but I suspect that the rationale for this entire leaflet is this one, single question.

As the reader will note, the respondent is asked to “Please tick the three issues that are important to you“. In other words, National is worried that the issue of state asset sales may be impacting on their polling.  But they’re uncertain. So they are trying to determine how deeply people are opposed to asset sales.

This questionnaire contains two “dog whistle” issues (crime and welfare), plus other issues surrounding economic growth, education, and health.

How will asset sales rate amongst all these issues?

If  all/most respondents rate asset sales as one of the top three – then they’re in trouble.

If asset sales is a minor choice, or hardly rates at all, it will embolden National to stay on-course with selling Mighty River Power.

This is the real crux of the matter.

23.

Raising achievement and accountability in schools

Again, a loaded question, as it assumes that there is a problem with accountability in our schools.

What – have all the principles left for Australia? Have all the School Boards resigned en-masse?

As for “raising achievement” – see #12, #13, and #15 above.

24.

Rebuilding Christchurch

Another question  with double meaning.

Firstly, it suggests to the respondent that this is an issue of important to National. Otherwise, why include it on the leaflet?

Secondly, how does the respondent rate this? Should it be chosen above asset sales in priority? Or is asset sales more important? Now we begin to see the craftiness of this questionnaire…

25.

Practical environmental policies supporting growth

A coded question.

What National is really asking is; “Is  environmental protection ok, so long as we can do mining on conservation land or protected marine  areas, as money is more important than protecting trees and fish?”

It is a dishonest question.

But then, the entire leaflet and it’s contents is dishonest.

And worst of all, at a time when the public are expected to tighten their belts; 2,500 state sector workers have been sacked; and essential services like MAF Biosecurity are being run down – National is wasting our tax-dollars on rubbish like this.

They forgot to ask one last question,

Should we be spending your money on leaflets like this?”

.

.

= fs =