This story was first published on 18 December 2012. It is still current, but there are new developments afoot.
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.
On 22 November 2012, Tony Ryall sent this response to the blog author,
In turn, on the same day, I emailed Mr Ryall with this correspodence,
Date:Thursday, 22 November 2012 9:41 PM
From: Frank Macskasy “firstname.lastname@example.org”
Subject: Pompe Disease sufferers: A request for mercy
To: Tony Ryall “Tony.Ryall@parliament.govt.nz”
Cc: Chris Laidlaw RNZ <email@example.com>,
Dominion Post <firstname.lastname@example.org>,
Daily News <email@example.com>, Daily Post <firstname.lastname@example.org>,
Grant Robertson <email@example.com>,
Hutt News <firstname.lastname@example.org>,
John Key <email@example.com>,
Jim Mora <firstname.lastname@example.org>,
“Joanna Norris ( DPT)” <email@example.com>,
Kim Hill <firstname.lastname@example.org>,
Morning Report <email@example.com>,
NZ Herald <firstname.lastname@example.org>,
Nine To Noon RNZ <email@example.com>,
Otago Daily Times <firstname.lastname@example.org>,
“email@example.com” <firstname.lastname@example.org>, Q+A <Q+A@tvnz.co.nz>,
Southland Times <email@example.com>, The Press <firstname.lastname@example.org>,
The Wellingtonian <email@example.com>
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
Government honours Herceptin promise
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.
Four days later, I received this response,
From: “Nicole Hine (MIN)” “Nicole.Hine@parliament.govt.nz”
To: Frank Macskasy “firstname.lastname@example.org”
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.
Private Secretary – Health
Office of Hon Tony Ryall
*** Up-Date ***
Finally, Mr Ryall’s response, dated 5 December was as follows,
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
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,
Another attempt to persuade the Minister to see the logic of this situation,
Date: Tuesday, 11 December 2012 9:17 PM
From: Frank Macskasy “email@example.com”
Subject: In response to your letter dated 5 December
To: Tony Ryall “Tony.Ryall@parliament.govt.nz”
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.
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,
- When National wants something – it will find the necessary money required.
- This is not a matter of available funding, but rather one of political will (or lack of).
- 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.
To be updated on Saturday, 3 August: Opposition parties work together on “orphan drugs”
= fs =