Terminal disease sufferer appeals to John Key – Update & more questions
Continued from: Terminal disease sufferer appeals to John Key
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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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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: AllysonKia 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 PMDear 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 AMDear 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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Frankly Speaking... 
What would you expect Frank? Help from key!
Geez any excuse to not fund it.
Just like diabetyics get the run around .
I’m hoping, Peter…
The Nats have millions to throw at The Hobbit, rugby, and god knows what else, but they can’t afford drugs to keep people alive? Key will have blood on his hands when one of these people, god fobid, dies.
What the hell goes through his mind, you have to wonder.
What is clear is that there are many things that take priority over human life.
That appears the only possible conclusion, Robert.
The perception is that Key used breast cancer sufferers as part of National’s election strategy in 2008, and extended availability of herceptin from Pharmac’s nine week period, to twelve months, to win votes.
It defies belief that National is somehow “prevented” from providing treatment for Pompe Disease sufferers when their actions over herception demonstrated otherwise.
Let’s hope that common sense prevails on this issue.