Home > Social Issues, The Body Politic > Health Minister circumvents law to fulfill 2008 election bribe?

Health Minister circumvents law to fulfill 2008 election bribe?

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

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reaching-out-300x196

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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.

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

Full story

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

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

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

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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

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Four days later, I received this response,

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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

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*** Up-Date ***

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

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

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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,

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Pharmac 'saved DHBs billions' in medicine costs

Source

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

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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

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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.

 

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= fs =

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  1. RL
    18 December 2012 at 1:59 pm

    Very interesting reading.

  2. 18 December 2012 at 2:02 pm

    It is SO frustrating when they just ignore us! Whenever I ask the hard questions I get fobbed off, shoved around and cut off. You can bet, if anyone from Pharmac or the National Party got Pompe disease, they would all of a sudden fund it. I would like to see them fund it without using it as an election year bribe, as it might show they actually were concerned about us, but they aren’t! Plus, only 7 voters aren’t going to matter too much to John Key!
    It is obvious there is plenty of money available, and I’m really wondering why Pharmac are digging their heels in so much on this. They are using dying people to manipulate pharma companies, I think.

  3. 18 December 2012 at 2:08 pm

    Yes it sure is

  4. jayne hall
    18 December 2012 at 3:13 pm

    i contacted fair go a while ago and told them about allysons plight as yet have received no reply at all maybe all this above could be faxed through to them so they can see the bigger picture

    • 18 December 2012 at 8:08 pm

      I’ll be sending the link to this blogpost to mainstream media, Jayne. They may pick it up, hopefully…

  5. K.K.
    18 December 2012 at 7:01 pm

    just fund the ERT for these people!! I can not believe how much is spent on funding movies and others things in NZ….maybe you need to become a movie director Allyson Lock and get some of those funds in your pockets and fund the ERT yourself!!

    • 19 December 2012 at 7:16 am

      The director of those movies lives just a couple of roads over from us. Maybe I’ll pop in and ask him for some pointers!

  6. 18 December 2012 at 8:40 pm

    not to mention the 1.6 billion bailout for rich investors..

  7. 18 December 2012 at 10:39 pm

    Because none of them can spell the truth, Frank…

  8. Coroleen Davis
    18 December 2012 at 10:48 pm

    Bloody typical of this ripoff government…Look after them selves and there rich mates, never mind the people of this country and the sick!!!…It will come full circle and bite them where it bloody hurts…Lying, arrogant mongrels!!!

  9. 18 December 2012 at 10:49 pm

    jayne hall :
    i contacted fair go a while ago and told them about allysons plight as yet have received no reply at all maybe all this above could be faxed through to them so they can see the bigger picture

    Send it to campbell live I guarantee they will pick it up no trouble at all.

  10. Neil McCormick
    19 December 2012 at 12:23 pm

    Maybe time for a request ot John Campbell’s show in the new year – he seems to have taken over the hard ones from Fair Go.

    • 19 December 2012 at 4:38 pm

      Neil, I’ve emailed a follow-up Advisory to “Campbell Live”. Let’s see if they pick this up and run with it…

  11. 19 December 2012 at 12:45 pm

    However, “in the current fiscal environment” all of the MPs get a sweet backdated payrise – http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10854916

    • 19 December 2012 at 4:33 pm

      I’ve picked that up to, Cody. An interesting juxtaposition, I think, and worthy of another follow-up email to Mr Ryall…

      • 19 December 2012 at 4:39 pm

        I love what you’re doing here Frank. It’s awesome to see someone asking the questions, not backing down, and not taking the shallow “full of so much bullshit you can’t even find the answers” replies as a proper answer – love it!

  12. 19 December 2012 at 5:00 pm

    Cody Hayward-Morrison :

    I love what you’re doing here Frank. It’s awesome to see someone asking the questions, not backing down, and not taking the shallow “full of so much bullshit you can’t even find the answers” replies as a proper answer – love it!

    Thanks, Cody. I’ll keep at it – at least until they carry me away.

    I’ve heard on the “grapevine” that members of Parliament do read this Blog. So the “message” may be percolating through to them…

  13. Priss
    23 December 2012 at 3:14 pm

    I surprised the media hasn’t picked up on this Frank!

  14. Clive @ large
    28 December 2012 at 10:52 am

    I hate to say it, but the only way Key will act is when Alyson is in hospital with the disease taking it’s toll, and TV cameras filming her. Key doesn’t react to anything else except where it affects his public image.

    Stay staunch Alyson.

    • 28 December 2012 at 11:51 am

      Clive, the trouble is, the main stream media seem to have lost interest in this. This is extremely unfortunate, because i feel the only way this medication will be approved is if John Key is publicly shamed into funding it. And by the time i’m in hospital, my life is bascially over because there is no “home care” available to people who are permanently mechanically ventilated. So there will be no coming home, no living with my children any more, my husband will have to leave his job, we will lose our house (can’t pay the mortgage with no job), the only way my children will ever see me again is hooked up to a wall in a hospital. This will cost $3000 per day, much more than the medication needed to help me avoid the hospital. Crazy eh?

  1. 9 January 2013 at 5:32 pm
  2. 11 January 2013 at 1:53 am
  3. 20 January 2013 at 12:33 am
  4. 4 March 2013 at 11:26 pm
  5. 8 March 2013 at 9:48 am
  6. 8 March 2013 at 9:59 am
  7. 14 May 2013 at 11:51 am
  8. 14 May 2013 at 3:45 pm
  9. 20 May 2013 at 11:38 pm
  10. 5 August 2013 at 9:12 am
  11. 8 August 2013 at 8:06 am
  12. 8 August 2013 at 8:10 am
  13. 8 August 2013 at 8:16 am
  14. 8 August 2013 at 10:38 am
  15. 23 September 2013 at 6:13 am
  16. 27 September 2013 at 8:02 am

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