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Posts Tagged ‘herceptin’

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

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

28 November 2012 20 comments

Continued from: Terminal disease sufferer appeals to John Key

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

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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.

.

Full Story

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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,

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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

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

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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

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

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Follow-up email to Tony Ryall,

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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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Response from Tony Ryall’s office on  26 November,

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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

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

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

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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)

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Terminal disease sufferer appeals to John Key

12 November 2012 40 comments

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Allyson Lock and six other New Zealanders suffer from a terminal condition called ‘Pompe Disease’. Without medication, Allyson and her fellow sufferers have little hope for survival.

Allyson has appealed previously to the Prime Minister, along with her story in the media,

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Full Story

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In an act of increasing desperation, Allyson has written directly to  Prime Minister John Key, via his Facebook account,


Dear Mr Key

 

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

 

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

 

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

 

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

 

Sincerely
Allyson Lock

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The cost of treating Pompe Disease is high – around $1 million per patient – but not out of reach of the Health budget. Especially when one considers that Pharmac has saved over  $5 billion over the past 12 years in prescription costs,

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Source

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The money is there. We’re not short of a ‘bob or two‘.

As taxpayers we have forked out  millions on MP’s travel perkstens of millions on SOE staff bonuses; $100 million on consultants to sell down state assets;  an estimated $1 billion  on government  consultants fees, and more.

On recreational activities such as the Rugby World cup, we spent well above $200 million of public money  and  $555 million in stadium upgrades.

Government has even pledged $1.26 billion to the IMF, to help overseas bailouts.

When the government wants to spend on something, the cash seems readily available.

Allyson is now voicing her dire situation in the most nakedly emotive terms possible; she is begging for her life.,

WE are  KIWIS  and we  NEED  treatment! If we had cancer we would get treatment! We wouldn’t have to beg and plead for our lives.

 

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

During the  2008 election campaign, John Key was eager and willing to assist breast cancer sufferers by promising to extend funding for herceptin from Pharmac’s nine week period, to twelve months. This was despite Pharmac insisting that there were no increased   benefits to cancer sufferers and “the money would be better spent elsewhere”.

John Key was willing to over-ride Pharmac in that instance.

Seven people’s lives now depend on John Key doing the same; to direct Pharmac to fully fund Myozyme, to treat Pompe Disease.

This would be the proper, humane thing for Mr Key to do. He’s done it for breast cancer sufferers.

And it would certainly counter the endless series of “bad news” stories that has afflicted National over the past few months.

Time is running out for Allyson and her fellow Pompe Disease sufferers. There is no reason why the Prime Ministrer cannot act decisively on this mattrer. Yes, he’s done it for breast cancer sufferers.

It is not election year, but let’s hope that Key will do the right thing in this instance.

Seven lives depend on it.

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Email to the Prime Minister

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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.
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

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Support Allyson and her fellow Pompe sufferers

Write to John Key at “john.key@parliament.govt.nz” to encourage him to direct Pharmac to fully fund medication for Pompe Disease sufferers.

You could save a life with an email!

Thank you.

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