Home > Social Issues, The Body Politic > *** UP-DATED! *** NEWSFLASH!!! *** On TV3’s Campbell Live Wednesday night!

*** UP-DATED! *** NEWSFLASH!!! *** On TV3’s Campbell Live Wednesday night!

On TV3’s Cambell Live, Wednesday (not Tuesday) night;

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mum-not-prepared-to-wait-and-die

Acknowledgment: Dominion Post – Mum not prepared to wait and die

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Allyson Lock, and six other New Zealanders are suffering from a rare condition called Pompe Disease. It is a condition that is treatable – but which PHARMAC refuses point blank to fund because of “price”.

Allyson is “lucky”. She is receiving treatment from a pharmaceutical company as part of a trial. For this, she has to travel to Australia every two weeks. As I wrote in a previous blogpost,

The travel involved leaving on Wednesday by driving from Masterton to Palmerston North; flying from Palmerston North to Auckland; flying from Auckland to Brisbane; driving next day to a hospital; having treatment; next day flying from Brisbane to Auckland; staying in Auckland overnight; then flying from Auckland to Palmerston North, and then driving from Palmerston North, home to Masterton. In the meantime her husband took time off work to care for their children. (Travel, food, and accomodation costs are met by the drug company.)

This routine takes place every two weeks.

Source: “One should judge a society by how it looks after the sick and vulnerable” – part tahi

There are others with Pompe Disease not so “fortunate”, and PHARMAC’s decision is efftively a death sentence.

This blogger has supported Allyson and her fellow sufferers ( aas well as others with rare diseases). Correspondence with Health Minister, Tony Ryall, yielded this deeply callous response,

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email-tony-ryall-pompe-disease-5-dec-2012-b

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Not enough money to fund treatment for ill New Zealanders – but plenty to throw at new BMWs?  Rugby World Cup tournaments?  Or subsidise movies? Or other corporate welfare? Or bail-outs for finance companies? Or pay rises for MPs?

Campbell Live has taken an interest in Allyson, and will be featuring a story on her tomorrow night(Wednesday 15 May).

This blogger encourages the reader to tune in to Campbell (tv3, at 7pm, ot TV3-Plus, at 8pm) and share in Allyson’s story.

[This blogpost has been up-dated. The original screening time was tonight, Tuesday, 14 May. The date is now Wednesday 15 May.]

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Previous related blogposts

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

Terminal disease sufferer appeals to John Key

National Party Supporters and their ‘Empathy’ for a woman with a terminal disease

“One should judge a society by how it looks after the sick and vulnerable”

“There’s always an issue of money but we can find money for the right projects” – John Key

Health Minister circumvents law to fulfill 2008 election bribe?

Priorities?

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= fs =

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  1. 14 May 2013 at 12:14 pm

    Thank you Frank. I think Campbell Live will make a fabulous job of this story. They were a great bunch of people!

  2. Madame Flutterby
    14 May 2013 at 12:15 pm

    Shared with my facebook friends and groups! And will be watching TV3 tonight. 🙂

  3. Aaron
    14 May 2013 at 12:20 pm

    I’m sure if a member of the National Party, or their family, or their friends had it, then funding would magically appear.

  4. Anna
    14 May 2013 at 12:39 pm

    Wow. This is unbelievable! Ka aroha to Allyson and I really hope this is sorted out for her.

  5. Chris Ford
    14 May 2013 at 1:02 pm

    Hi Frank, current spending limits of course don’t apply to corporate welfare, only social welfare! What a sad neo-liberal age we live in! Fight the power, Frank, as that’s what we can do!

  6. Robert J
    14 May 2013 at 1:19 pm

    Great advocacy on your part, Frank. Hopefully Campbell Live do a good job highlighting this injustice. Best wishes to Allyson for her bravery and tenacity – have no doubt she will prevail.

  7. Procrastinator
    14 May 2013 at 2:00 pm

    Absolutely outrageous. Ryall, Key and the rest of them – how do they sleep at night?

    I’m surprised this issue isn’t more widely publicised. Campbell Live should help at building awareness and campaign for change. Frank, seriously consider posting this matter on The Daily Blog, as much publicity as possible is needed. Hang in there, Allyson, don’t lose hope.

  8. K
    15 May 2013 at 10:44 am

    Glad I didn’t miss it. Will watch! Thanks Frank.

  9. Julie Kremke
    15 May 2013 at 11:46 am

    I met Allyson through an online support group for hundreds of others with Pompe. I think its a shame she has to spend so much time away from her family to travel for treatment for this disease , all because of a government of such a beautiful country denies coverage for this dreadful disease. Im certain if a child or other family member developed Pompe , treatment would become top priority then. This to me makes no sence. A countries people should be the governments top priority . How can any country remain strong and beautiful if it’s peoples health needs are not met.

  10. lisa corbett (nee cameron)
    15 May 2013 at 12:35 pm

    my hat goes of to Allyson she is a very strong and brave lady is a wonderful mother and wife and a shame she has to travel all the way to oz every 2nd weekend it should be funded here in nz

  1. 14 May 2013 at 10:16 pm

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