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,
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.
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,
The money is there. We’re not short of a ‘bob or two‘.
As taxpayers we have forked out millions on MP’s travel perks; tens 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.
Email to the Prime Minister
Date: Sun, 11 Nov 2012 17:34:10 -0800 (PST)
From: Frank Macskasy “firstname.lastname@example.org”
Subject: A request for mercy
To: John Key “email@example.com”
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
Support Allyson and her fellow Pompe sufferers
Write to John Key at “firstname.lastname@example.org” to encourage him to direct Pharmac to fully fund medication for Pompe Disease sufferers.
You could save a life with an email!
= fs =
– 10 November 2012 –
– Selwyn Manning & Phoebe Fletcher –
– 7.3% unemployment – Pike River Mine – US Elections –
Issue 1: Does the Pike River Mine report herald a change in the culture of self regulation and deregulation?
Issue 2: Big gay red shirts and David Beckham’s intelligence rated by the thickness of bat feces – is it Prime Ministerial?
and Issue 3: What can the world expect from an Obama win?
Citizen A broadcasts 7pm Thursday Triangle TV
Acknowledgement (republished with kind permission)
= fs =
Retrieved from my files, this little item from the Otago Daily Times in March 1997,
I wonder what Bolger might have to say to Mr Banks now? Perhaps they could arrange a chat over a cuppa tea in a cafe in Epsom…
= fs =
For a better New Zealand…
~ Cleaner rivers
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~ Less on Roads - more on Rail
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