Home > Social Issues, The Body Politic > Terminal disease sufferer appeals to John Key

Terminal disease sufferer appeals to John Key

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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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  1. 12 November 2012 at 3:32 pm

    Hi Frank, just one thing about the cost…the lady who has been turned down 4 times, is estimated to cost approximately $325,000 per year to treat.

    • 12 November 2012 at 3:55 pm

      So even cheaper than the Fairfax story?

      That means even less reason for the Prime Minister to ignore this tragic situation, Allyson!

      • 12 November 2012 at 4:05 pm

        Yes even cheaper than the Fairfax story

  2. Robbie Kaiviti
    12 November 2012 at 3:49 pm

    All a question of priorities Frank and you know that governments priorities are usually to be found up their collective arsses.

    • 12 November 2012 at 3:55 pm

      Yeah, I know, Robbie. I’m hoping Key makes a ‘mistake’ and decides to fund treatment for these people…

  3. Sentient Headmounted Laser
    12 November 2012 at 3:56 pm

    Same deal with my disease and plenty of others. Its hard, but I personally don’t mind, needs of the many, needs of the few.

    However, the problem largely comes down to big pharma, and they use… you guessed it… PATENTS! most of these drugs can be made for pennies if you don’t pay the dollars in royalties and licenses. My own tale: http://pirateparty.org.nz/2012/09/16/a-patent-patient/

    • 12 November 2012 at 4:08 pm

      Personally, i DO mind. I have young children who i want to see grow up. Why should the needs of anyone else be any different than mine? Why should their rights be more than mine? And patents have absolutely nothing to do with this.

  4. 12 November 2012 at 4:14 pm

    email sent. hope it helps!

    • 12 November 2012 at 4:20 pm

      Thank you very much!

  5. Monique Jones-Ciochetto
    12 November 2012 at 4:32 pm

    Another issue that has never fully been explored is we, as tax payers who support health funding, have never been told that the government does not fund every illness. There are quite a long list of diseases and illnesses that are not funded by Pharmac/Goverment for many different reasons.

  6. 12 November 2012 at 4:35 pm

    I am not a citizen of New Zealand , however I am a Pompe victim and cannot use the treatment for this aweful disease due to allergies to the treatment. Im losing my fight with this disease and have only been diagnosed a year ago . My diaphragm strength is already a minus 10 , a normal person should be at 50 and the lowest acceptable is minus 20 . Its a dirty shame to allow the citizens of your country to suffer from this illness, If it were your child i bet you would sign the papers for treatment in a heartbeat !!!! It is rare but ts out there and who knows you could be carrying the gene yourself and not even know it .No one should have to travel to another country or anywhere to be treated for a disease of any type ,

    • 12 November 2012 at 9:35 pm

      Well said, Julie!

      Thank you for your kind comments. :-)

      And our thoughts are with you…

  7. Jacqui B
    12 November 2012 at 5:04 pm

    The government can afford to pay for the funding.

    • 12 November 2012 at 9:34 pm

      Damn right they can, Jacqui. They can find the cash when it’s one of their pet projects, or subsidies for companies like Warner Bros.

      They sure as hell can find the funding for medication for people whose lives depend on it!

  8. M Saph M
    12 November 2012 at 9:35 pm

    Mr Key on your watch we have lost many Kiwi’s …. how many more have to die on your watch Mr Key, while you are racking up the bodies the people are watching and remembering that YOU and YOUR party care MORE for MONEY than you do for Kiwi lives …. this kind of leadership will never be remembered for anything great ….. especially if you turn away from these Kiwi’s who need help to fund their medicines …. DO something that will leave a positive legacy & be a Kiwi that others can be proud of …. the choice is yours!!!!!

  9. Leah Mexted
    12 November 2012 at 9:42 pm

    They wasted 30 million on a yacht. Who did that benefit?

  10. Jacqui B
    12 November 2012 at 9:59 pm

    I have noticed that they don’t fund as much medication as they used to.

  11. Strawberry Paddocks
    12 November 2012 at 11:25 pm

    It’s pretty mean when a government treatrs it’s own people this way. I showed my father this blogpost and he was disgusted by it. He’s been a National man all his life, one of “Rob’s Mob”, and proud of it. But he’s liking Key less and less and said he’ll probably stay home at the next election.

  12. Angela Biggs
    18 November 2012 at 4:08 am

    I’m not a kiwi, but your comments ring true for so many countries..all the governments seem the same. Plenty of money for pet projects that make them look good. In our country (UK) at present it’s stupid wind farme which line the pockets of land owners and the turbine companies, using subsidies. The amount of power they ACTUALLY produce (as opposed to PROMISE to produce) is enormous, but the governments’ blind commitment to them is nothing short of idiotic. The huge amounts of WASTED money that instead could save lives is sickening.
    I also agree about the monies made by the companies re drug cost. I know research costs a fortune, but worldwide these costs must have been recouped long ago. Now lives lost through pure greed.
    No company works for charity, but there must be a balance, and they surely have some sort of conscience?…or maybe not.How do the shareholders sleep at night??

  13. 22 November 2012 at 9:50 pm

    I have received a reply from Health Minister Tony Ryall – my email to the Prime Minister was forwarded on as maybe it wasn’t as important an issue for Key as the Herceptin thing in 2008…

    Anyway, Ryall’s reply was not very helpful and raised more questions than it answered. So a response has been sent tonight, and hopefully we can get some clarification from the Minister regarding the disparity in one rule for breast cancer sufferers and another for Pompe Disease sufferers.

    Stay tuned for a blogpost update on this matter.

  14. Leigh
    20 December 2012 at 6:48 pm

    To all who have supported Allyson and the other 6 sufferers of this disease I do hope the voices of many will one day be heard by Mr Key. I myself although not sufferring from this terminal illness i understand the fustrations of daily worries and financial hardship brought from this condition not to mention the partners and families. Mr Key make our country different, give our nation a heart, Im sure if it were you or me with a count down on our lives wouldnt we be finding a cure, $1million is small compared to time Im sure we can think of a number of things that surpass this figure, what does 3 days of war spend?

    To all her friends, readers and families Im here to follow your plight and await any outcome so that your sufferring isnt burdened with fustration, anguish and helplessness.

    Ms Leigh (Care Giver for Dementia and Challenging Behavior Senior Citizens NZ )

  15. 20 December 2012 at 8:51 pm

    @ Angela, Leigh, and others…

    Well said. If politicians had the compassion of you folk (and others who’ve contacted me privately), this matter would never have arisen…

  1. 26 November 2012 at 5:21 pm
  2. 9 January 2013 at 5:32 pm
  3. 11 January 2013 at 1:53 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. 31 March 2013 at 12:05 pm
  8. 14 May 2013 at 11:51 am
  9. 14 May 2013 at 3:45 pm
  10. 20 May 2013 at 11:38 pm
  11. 8 August 2013 at 8:00 am
  12. 8 August 2013 at 8:06 am
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  14. 8 August 2013 at 8:16 am

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