Priorities?

National Government priorities:

Amount spent by government on the Rugby World Cup: $39 million

Total amount of public spending: $200+ million

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Amount spent on  ‘plastic waka’: $2 million

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Extra amount spent on “party fanzones” to cater for extra crowds: $5.5 million

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Amount spent by government on 34 new ministerial BMWs: $???   (“Commercially sensitive” – but retail cost, $200,000 each.)

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Amount spent by MPs on accomodation and travel  in just six months: $7.69 million

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Amount required to keep five people alive, who suffer from the rare Pompe disease:  overpriced  (according to the government),

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It seems that this government can spend millions on rugby, party zones, luxury limousines, ministerial travel and other perks – but spending money to save the lives of our fellow New Zealanders is “unaffordable?

Well, at least this illustrates the priorities of this government like nothing else does. It is obvious what is more important to John Key and his colleagues in the National Party.

What makes this tragedy even more ghastly is that in 2008, John Key campaigned on behalf of  women suffering from breast cancer for Pharmac to fully  fund herceptin. Pharmac at that time had decided to fund only a nine week course – whilst campaigners were demanding a full 12 month period of funding.

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Source

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Perhaps the difference between Mr Hill’s case, suffering from Pompe’s disease, is that 2008 was an election year and National was campaigning hard against an incumbent Labour government, led by an experienced, politically savy,  and fairly popular  prime minister.

National of course, won the 2008 election and Key “made good” on his election promise to force Pharmac to extend funding for herceptin,

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This year, is also an election year – but National is high in the public opinion polls and John Key is considerably ahead of his nearest rival, Phil Goff.  John Key therefore has no need to “play to the public“. He can afford to be “somewhere else” when a dying man knocks on his office door.

This is a shameful state of affairs. This government can find money to spend on luxury items; spend-up large on a rugby tournament and party zones; etc – but $5 million is somehow “unaffordable”?!?! Only the most soulless government could behave in this manner.

How craven for a Prime Minister not to have the courage to meet a dying man. And how gutless to have security guards do the Dear Leader’s dirty work in turning away Mr Hill.

Perhaps it’s not the sort of photo-op that Mr Key favours?

Mr Prime Minister – I challenge  you to  extend full treatment to Laurie Hill and other sufferers of  Pompe disease. I challenge you to do for sufferers of  Pompe disease what you promised for breast cancer sufferers in 2008.

Hell, I’ll even close down this Blog if you do. It’ll be one less critical voice niggling at you and your government.

Are you up for the challenge, Mr Prime Minister?

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+++ Updates +++

An email sent to the Prime Minister and  Minister of Health,

from:    [email]
to:    Tony Ryall <tony.ryall@parliament.govt.nz>,
Prime Minister John Key <john.key@parliament.govt.nz>
bcc:    [email]
date:    Sat, Oct 22, 2011 at 10:28 PM

Sirs,

You may be aware that there are five people in New Zealand who desperately require assistance to treat their condition, Pompe’s disease. These people are dying from their illness and require a treatment of myozyme to survive.

Three years ago, you campaigned to have herceptin extended from a 9 week treatment, to a full 12 months – effectively over-ruling Pharmac. This was done at the desperate request of women suffering from breast cancer.

I ask that you do the same for sufferers of Pompe’s disease. I’m sure you know who these people are.

You are your colleagues were only too happy to spend $36 million on the Rugby World Cup. Plus another $5.5 million on extensing the “Partyzones” in Auckland. Well, we now need that same generosity of spirit to help save five lives.

You may do it from a senseless of generosity and knowing it is the right thing to do.

Or, you may do it because it is hardly the sort of election issue that you want clouding your campaign.

The important thing is that  the right decision is made – there are five people counting on you.

Regards,
-Frank Macskasy

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Useful Email addresses

Prime Minister, John Key

john.key@parliament.govt.nz

Health Minister, Tony Ryall

tony.ryall@parliament.govt.nz

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Additional reading

Editorial: Behind a penguin on priority list

New Zealand Pompe Network

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Acknowledgement

Thanks to Sharlene for bringing this issue to my attention.

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  1. Red
    19 October 2011 at 12:49 pm

    I think we all know that Key is only interesting in photo opportunities and getting re-elected. I cant believe I voted for that man!!! 😦 Never again!!!

    • fmacskasy
      19 October 2011 at 7:43 pm

      In this case, Red, the lives of five people are hanging on Key’s decision. That’s an awful lot of power in one man’s hands.

  2. 22 October 2011 at 12:25 pm

    I’m one of the Pompe patients in NZ. I had to leave the country to go on a drug trial in the United States to try and save my own life so I get to see my young children grow up. I also voted for John Key because I thought he was a decent man. But never again. Thank you for this blog.

  3. 22 October 2011 at 12:52 pm

    Allyson :

    I’m one of the Pompe patients in NZ. I had to leave the country to go on a drug trial in the United States to try and save my own life so I get to see my young children grow up. I also voted for John Key because I thought he was a decent man. But never again. Thank you for this blog.

    Allyson, I’m only too happy to help. I have sent Key’s office a link to this page (no response yet) to let them know that you folks are not forgotten. I will do what I can to help.

    Let’s hope that Key understands what is required of him to help.

  4. Deborah Kean
    23 October 2011 at 3:37 pm

    The most interesting thing about Herceptin is that the “grassroots” campaign for it, was actually a drug company initiative! (I believe it’s called ‘astroturfing’? )
    Pharmac were correct – Herceptin will help only a fraction of the breast cancer patients in New Zealand. Those who think it’s vital are wrong!
    Totally different from Pompe’s disease… Shame, Key!

  5. Steve
    23 October 2011 at 5:22 pm

    The Health Ministry spent $14.1m on methadone programmes in New Zealand in the year ended June 30, 2010. It spent $118m on alcohol and drug treatment in the same period.
    More than half of all prisoners have continuing drug or alcohol problems and the Corrections Department spends $4m each year on treatment programmes within prisons.
    How come these losers… whoops, sorry, “disadvantaged people” get funded yet people who are actually sick dont?

  6. Deborah Kean
    24 October 2011 at 2:28 pm

    People with drug and alcohol problems don’t exactly have it easy, Steve! We’re not going to get anywhere by deciding who is “deserving” and who is not. It’s been established by now that alkies and druggies don’t lack “will-power” or strength of mind, but that they do in fact have physical problems – addiction is a problem of brain chemistry. They are in fact disadvantaged, and I say that as someone who didn’t want to believe that – my first (abusive) husband is an alkie, and trust me, I would rather believe he’s bad!
    Would you refuse treatment to a smoker with lung cancer, or an alkie with liver problems? Or a diabetic with kidney disease? This “deserving” versus “undeserving” dichotomy must end, it’s just a divide and conquer strategy.

  7. 24 October 2011 at 2:48 pm

    Deborah, don’t people who abuse alcohol and drugs have a choice whether or not to embark on this road? I did not have a choice as to whether or not I have this genetic disease, it was something I got at conception through no fault of my own. And indeed my parents would never have known they were carriers of this disease. Alcoholics and drug abusers had a choice to do drugs or abuse alcohol. To say they had no choice is to say that it was inevitable that this would happen to them. And you cannot possibly beleive that? I remember reading this story…A man came across a young man sitting in a gutter, forlorn, helpless, homeless…he said to the young man in the gutter, “what made you become like this”. The young man replied “my father was an alcoholic, this is what I learned, I could never have hoped to become any better”. The same man came across a well-to-do high acheiver and said to him, why have you become this person you are today? The young well-to-do man said, “well, my father was an alcoholic, I did not want to end up that way, so I CHOSE a different path”.
    I used to be a smoker. I gave up because I CHOSE to give up. I didn’t ask the government for free smoking patches. I don’t expect the government to help me if I screw up. That is MY decision.
    Is it ok to treat a smoker or an alcoholic but NOT someone like me with a disease I didn’t give to myself? Is it ok to treat a smoker with lung cancer but not someone with a genetic disease? Is it ok to treat a diabetic with kidney disease but not someone with a genetic disease? Why am I undeserving? Do you know that a lot of the methadone users sell their methadone to make money to buy more drugs? Yes I KNOW this is true! Why is a smoker deserving, why is an alcoholic deserving, but not me?
    This is what Steve was getting at.

    • Deborah Kean
      24 October 2011 at 3:31 pm

      I didn’t say it’s ok to treat a smoker or an alcoholic but not an ‘innocent’ victim! Please, don’t misinterpret me. I never said you were undeserving, you’re twisting my words. Please don’t do that, I deserve better.
      My point was that this blaming thing really makes me very cross! A woman years ago, permanently forfeited my friendship, by saying that my mother had died of a rare auto-immune disease because she had a “negative” attitude! Health professionals annoy me greatly, because most of them do the blame thing, and trust me, I know – my son is a cardiothoracic nurse, and he’s right into the deserving/undeserving patient thing – not that he allows his views to affect his nursing practice of course!
      My father was an alcoholic. My ex husband is an alcoholic. I am a tee-totaler as a result. I am a smoker, and I choose to be a smoker. I shall stop when I want to and not one moment before.
      However, no alcoholic sets out to be one! Up until very recently, alcoholism was believed to be a ,matter of will-power and good or bad character. Now we know it’s genetic. As with all genetic problems, there are people with no family history, who nevertheless have the faulty gene. You can if you wish have a glass or two, of something with dinner, The alcoholic can’t stop there, and many, perhaps most of them don’t realise that’s true of them until it’s too late.
      I have a genetic disease, as well. It’s extremely painful and somewhat debilitating, but you don’t catch me whinging – especially against people who are “lucky” enough to be “disadvantaged”. Have a bit of compassion for others, or is all your compassion reserved for your sweet self? My point was and continues to be, don’t buy into the divide and rule strategy! Key and NACT would love you to do that

      • 24 October 2011 at 3:58 pm

        Deborah, I have not ever, nor will I ever, refer to myself as a “victim”, innnocent or otherwise. People who know me well would agree with that. Nor do I ever whinge about my condition. YES I DO go into bat for myself and for my fellow Kiwis who have this disease to get treatment for us with Pompe disease.
        Let’s not be politically correct here. Do you think that people who bring sickness upon themselves should be more deserving of treatment because they are cheaper to treat than someone with a rare genetic disease like myself or my twin brother or my 3 other fellow Kiwis with this same disease?
        My husband, who happens to be Steve from the above post, is the son of an alcoholic. Steve chooses NOT to be. It IS all about choice. Steve doesn’t drink a drop of alcohol. That is his CHOICE!
        It is not true that ALL people with genetic problems have no family history. With Pompe disease this is true, but not ALL genetic diseases.
        IF I was only “disadvantaged” this would actually be ok! BUT…I’m DYING! Without intervention from Pharmac and John Key, I WILL DIE! I don’t just have pain that will keep me from doing my usual day to day stuff. I have a genetic disease that is slowing robbing me of my ability to use my muscles, and in particular my diaphragm muscle. This of course leads to respiratory failure. I have had this happen to me one already. When my diagphragm weakens more I will eventually (within the next year or so) end up on a ventilator via a tracheostomy in my throat. I will be permanently hospitalised, in a wheelchair and unable to breathe for myself. My husband will have to leave his career in order to care for our young sons who are only 8 and 10 years old. We will lose our house because he will be unable to pay for our mortgage. So my little boys…lose their Mum, their home, my husband loses his wife…maybe I would like some compassion “for my sweet self” from Pharmac!

    • Type1Diabetic
      31 March 2013 at 6:17 pm

      First of all, I take much offense to the “diabetic with kidney disease” comment. Diabetes is a genetic disease. Type 1 is completely genetic and an incredibly difficult disease to manage – I deserve my disease no more than you deserve yours and if I or any other diabetic were to get kidney disease then we certainly wouldn’t deserve it.

      Furthermore, I get that you’re upset and angry but that doesn’t mean you can put other people down. Saying that just because your one friend was able to choose not to be an alcoholic, all alcoholics can choose not to is a complete fallacy. I mean, good for him but you’re ignoring so many other factors. The “I did it so everyone can” is one of the most destructive and worst fallacies there are… Many drug users end up using either through massive emotional trauma – like being molested or through being raised in violent families where taking drugs was expected of them. They’re victims and should be helped (in an ideal world we’d help them before). You present this false dilemma – like the only option is to help you or help them and that’s a stupid dilemma. As a society, we should help them and you – you both deserve the help.

  8. 24 October 2011 at 3:03 pm

    Interesting comments here…

    Personally, I prefer not to try to choose who is “deserving” and who is not; who merits healthcare and who doesn’t; or how much each person is allocated… that seems a huge responsibility for people to make about others. And considering our human propensity toward making mistakes, it’s something we can often get wrong.

    I watched “The Court Report” on TVNZ7 this week, and it was perhaps one of the most insightful media reports on crime and prisons I’ve ever seen. It was an interesting glimpse into what separates some folks in society from others.

    I encourage folks to watch this; http://tvnz.co.nz/content/3602661.xhtml

    What does this have to do with healthcare for those who need it? Perhaps, on the face of it, very little. But taken as a whole; in the context of we we treat each other – a lot more than we might realise?

  9. 24 October 2011 at 3:15 pm

    Frank, I can’t watch that show because it won’t allow me because I am in the United States at the moment. Would love to know what was said.
    The interesing thing you said about preferring not to choose who is “deserving” and who is not… this is exactly what Pharmac has to do. They DO decide who is going to get the health dollar and who is not. In my case, unfortunately, it is NOT me. My young sons would of course disagree with Pharmac’s decision. They would prefer to grow up with their Mum taking care of them. And I of course would absolutely beg for the chance to do that.

  10. Steve
    24 October 2011 at 3:37 pm

    Deborah,
    All I am asking for is parity. If they are happy to make a decision to help people who have made poor choices, then they must help those who have no choice.
    They dont have money to provide support to everyone so they must decide. I personally belive that people who chose to live within the laws of society should take precidence over those who do not. That $4 million would easily keep deserving people alive.

    • Deborah Kean
      24 October 2011 at 3:55 pm

      Well, of course you deserve parity! My point is that they *do* have enough money to provide support to everyone, it’s just a matter of priorities, as Frank said.
      For goodness’ sake, who are you to decide who is deserving and who isn’t? OK, I am going to be more “self-disclosing” (to use shrink talk, which I hate) than I wanted to be. My oldest son (who was adopted away from me as a baby) is in Odyssey House right now, he’s a P addict. When his adoptive mother dropped that bombshell on me a few months ago, it was hellish, I assure you. No doubt you’d drop him in the undeserving category – I mean, he’s used P, shock horror! Yet he’s just a 38 year old father trying to get clean so he can get access to his 3 year old son again, a guy who’s not got over being given away to a wonderful woman married to a complete bastard… and who probably has an addictive personality as a result – but who also probably has inherited from his grandfather (my father) problems of brain chemistry leading to addiction.
      Be practical. Would you want all help withdrawn from ‘criminals’ and ‘addicts’ so it could be given to the middle classes? If so, then be prepared for the criminals and addicts and their angry children, to take it out on your house, yacht and business. Do you want to go back to the 19th century when (as my mother told me) bureaucrats withheld old age pensions from ‘undeserving’ people – a typical mean-minded Scots thing to do, I thought at the time. (NZ was settled by the Scots, after all!)
      But maybe like Allison, you’re not even in NZ?

  11. 24 October 2011 at 4:04 pm

    Oh Deborah, the reason I am NOT in New Zealand right now is because I had to choose life over death. I am from Masterton in New Zealand, but i CHOSE to come to Florida to try and save my life so that I could see my wee boys grow up. I’m currently taking part in a clinical trial for a new medicine which will HOPEFULLY arrest the progression of my fatal disease. My husband, Steve, is currently in New Zealand looking after our wee boys so that I am able to take part in this clinical trial. And just so you know, i’m adopted too, and my birth father by all accounts is not the most “deserving” of people to ever have walked the earth. I refuse to use this as an excuse to be a total loser.

    • Deborah Kean
      24 October 2011 at 4:21 pm

      “And just so you know, i’m adopted too, and my birth father by all accounts is not the most “deserving” of people to ever have walked the earth. I refuse to use this as an excuse to be a total loser.”

      OK, you want my sympathy, but insulting my son isn’t the way to get it. Don’t be a bee-atch, okay? I wasn’t referring to C’s birth father, but his adoptive father, who messed him up. It’s already been established, I think, that you don’t have any compassion for anyone but your own family – but I would like to urge you to spare a thought for people who can’t afford to go the USA?
      Think about Rau Williams, an older Maori man who was denied dialysis* in the 90s, because he had a degree of dementia. He died. I saw a heap of middle class people in the media saying “he should go private, dirty little beneficiary that he is” (he was on National Super, but it seems that is a benefit when a rural Maori gets it…
      These people were unimpressed by the fact that no private hospital offered dialysis back then.

      * Denied by Tau Henare, who should forever be ashamed.

      • 24 October 2011 at 5:01 pm

        NO I don’t want your sympathy at all. I want Pharmac to fund treatment for us with rare diseases in New Zealand. Call me a bitch if you want, I don’t care. You can ask my friends and family if I have compassion for my fellow Kiwis. I also could not afford to come to the USA. We had to do a ton of fundraising to be able to afford for me to come here. It was a last ditch effort to save my life. There are at least 2 more Kiwis coming to the USA for the very same reason. None can afford it, but we have to choose to travel, or die. I certainly do, and have, spared many thoughts for my fellow Pompe patients across New Zealand who cannot get treatment. This is why we have supported each other in our desperate attempts to get treated. This is why I support and will help each and every New Zealander who wants to travel to the USA to get help. Yep i’m a bitch, proud of it!

  12. Deborah Kean
    24 October 2011 at 4:13 pm

    Allyson :

    Let’s not be politically correct here. Do you think that people who bring sickness upon themselves should be more deserving of treatment because they are cheaper to treat than someone with a rare genetic disease like myself or my twin brother or my 3 other fellow Kiwis with this same disease?

    Don’t misquote me, I never said that! You’re misinterpreting me again…

    It is not true that ALL people with genetic problems have no family history. With Pompe disease this is true, but not ALL genetic diseases.

    Another thing I never said… I said that some people with genetic conditions (as opposed to acquired conditions) have no previous family history,. It’s called mutation.

  13. Steve
    24 October 2011 at 4:18 pm

    i am not aware that its compulsory to use P in this country therefore it was his own decision which then means YES i would consider him less entitled to treatment than Allyson.
    The government have decided that regardless of this he still deserves treatment so therefore so should Allyson. I would have just shot him.

    • Deborah Kean
      24 October 2011 at 4:26 pm

      “The government have decided that regardless of this he still deserves treatment so therefore so should Allyson. I would have just shot him.”
      Thanks so much for having said you would like my son to be murdered. As I said to your Mrs, if you want my sympathy, and you evidently do, insulting my son is not the way to go about it.
      In my opinion, Allyson just joined the undeserving category – or maybe the unlucky category for having a husband who advocates wanton killing?
      What if one of your sons reacts to the trauma of your situation by becoming a criminal or an addict? Shoot him? No, I didn’t think so, shame on you.

      • Steve
        24 October 2011 at 4:29 pm

        Deborah,
        there is nothing you have that i want.

      • 24 October 2011 at 4:32 pm

        Steve doesn’t want your sympthy Deborah. He wants his wife to be well. Thank you for welcoming me to the “undeserving” category.
        If one of our sons reacts to the trauma of our situation by becoming a criminal or an addict, then surely this is their own choice. It is not compulsory that they would react in this way and we would certainly not enable them by saying they had no choice but to do so.

  14. 24 October 2011 at 4:23 pm

    Deborah you said and I quote “As with ALL genetic problems, there are people with no family history, who nevertheless have the faulty gene”. This is not a misquote at all. I’m not misinterpreting you, this is what you actually said.

    I know all about mutations, and how this works. I am not a stupid person.

    All I want is the right to be treated, and the right for my fellow Kiwis with rare diseases to be treated. It is not all about my own sweet self. It is about the right of people to get treatment.

    • Deborah Kean
      24 October 2011 at 4:31 pm

      You missed my point, which is that people from families with no history of a condition can suddenly sport that condition. If your condition is an exception, I would be amazed, frankly!
      I never said you should not be treated, I simply said that you and your husband have no right to decide that others do not have that right!
      As I said to him, the money exists, but Key thinks it should be spent on rugby or tax cuts for idle rich.
      Disgusting.

      • 24 October 2011 at 4:34 pm

        Well that part we definitely agree on Deborah!

  15. 24 October 2011 at 4:34 pm

    I am fortunate enough to live in Canada where there is enough value put on my life that I have been receiving treatment for Pompe Disease for about 18 months. At about the time I started treatment, my health was worsening at such an alarming rate that it was predicted that I would require mechanical ventilation in about two years. That means that I would have a hole cut in my neck and a machine would breathe for me. I would be stuck in a wheelchair. I had a host of mobility issues but the breathing was the most alarming for me.

    After 18 months of the same treatment that Pharmac has denied the patients in NZ, my lung capacity is about half again what it was. Lying down (sleeping), it has doubled. I can now look at the future with anticipation instead of fear. Certainly some people respond better than others, but the patients there should have the same opportunity that I have had.

    Our healthcare system is a bit different than yours, but I had a conversation with the person here that made the final decision to treat me. He would probably be equivalent to the head of Pharmac. He said he would much rather be able to treat someone in my position than a group of people that want to take one pill a day instead of two. He was illustrating that decisions are not always difficult and that it just takes someone with will and clear thought to make them. I pray that someone in the process there has the will to step up and say this isn’t right!

    There are some hard questions that need to be asked. Why does Pharmac think they are so much smarter than the about 40 other countries that have decided to fund this? Do they understand the responsibility that we all have to participate in research? When we don’t do that directly, we have the opportunity to do it indirectly by purchasing products and enabling companies to further their research. This is very very important. We all know that wonderful things come out of research, not just for Pompe. A $5m expenditure has a negligible affect on the budget, so what is really going on here? How can healthcare be withheld so that a ball can be kicked around? Is this really happening? Really?

  16. 24 October 2011 at 5:50 pm

    Allyson :

    … It is about the right of people to get treatment.

    Part of the problem of state spending cutbacks is that it pits people-against-people. Those who miss out look at those who qualify for treatment and resentment builds. It’s a fairly common tactic of dividing the community and individualisation; folks become self-oriented, just to survive.

    It’s bad enough when the well-off and rich complain, “why should I have to pay for someone else’s medical care” – and then social division extends to others in the community. I’ve even heard some on unemployment benefits criticise other welfare recipients – totally missing the irony of their comments. The irony being that most of us are in the same boat.

    It’s a fairly human response, I guess.

    The ‘trick’ is not to fall into the trap set by our elected representatives (who have their own political agendas), but to remember that if we look out for each other, we are stronger.

    Regarding this week’s “Court Report” episode, I simply don’t believe I could do it justice by paraphrasing what the guests said. One of them was a visiting ex-MP from Britain, Jonathan Aitken, who went to prison for perjury. It has given himself insights into why some are in prison. Another was criminologist John Pratt, who explained, in very simple terms why prison works as ca deterent to ordinary people – but not to those who end up in jail.

    It was probably the most easy-to-understand explanation I’ve heard in my life.

  17. 24 October 2011 at 6:06 pm

    Steve :

    i am not aware that its compulsory to use P in this country therefore it was his own decision which then means YES i would consider him less entitled to treatment than Allyson.
    The government have decided that regardless of this he still deserves treatment so therefore so should Allyson. I would have just shot him.

    One of my closest family members suffers from MS (multiple schlerosis), and is pretty much an invalid by now. Twenty years ago, he was an outgoing; energetic; happy-go-lucky young man with a lovely family of his own and two very profitable businesses. Now, he is bedridden.

    When his MS was diagnosed, he took it rather badly. He simply couldn’t cope and became a heavy user of drugs. He lost his family, who couldn’t cope with him, and his businesses collapsed.

    I guess it’s easy to say he chose drugs. But knowing him, and seeing how his frustrations grew as his disease took over, I could understand why he took a self-destructive road of drugs and alcohol.

    Could he have made other decisions? Perhaps. I suspect he was too proud and his head-strong persona (which, in his business dealings, was a positive trait) of resolving his own problems created a sense of denial.

    To an outsider, he’s a ‘druggie’. To me, he’s a family member who I still love dearly, and has been dealt a bad hand, for which he has no ability to deal with.

    In my view, he should be given the support/treatment he needs (though there’s no cure for MS) – as well as for those who suffer other conditions such as Pompes. You folks are strangers to me – I’ve never met any of you – but I wouldn’t have it any other way.

    • Deborah Kean
      24 October 2011 at 6:25 pm

      I am sorry to hear about your family member Frank! We can’t really know why someone starts using drugs, what kind of stressors they have – but when they want to get free, they want, need and deserve our help and support. I would help my son if he would let me, but he doesn’t want any part of me, He blames me for the hellish life he had with his adoptive ‘father’…
      It should not be either/or but both/and – regardless of desert. Part of me wants to say “sod the bloody alcoholics, no new liver for you, you horrid old drunk!” But the other part of me knows that’s wrong. Just because I am lucky enough to be able to resist the temptation to have that first drink (though once I do, I can’t resist the second the third and beyond!) that doesn’t make me a better or worthier person.

  18. 25 October 2011 at 3:43 am

    Deborah I hope that one day your son can find a way to look at you as the lady who gave birth to him and adopted him out in the hope that he would have a good life. The pain and anguish that would have gone along with giving your baby away would never have left you. Maybe your son will come to know that one day and you will have a good relationship with him. I hope so anyway.

    I think we are all in agreement that people need to be treated. When it comes down to who is deserving and who is not, John Key and Pharmac have drawn a clear line in the sand about who can have treatment and who cannot.

    I enjoyed the above debate actually, it’s very emotive and interesting. We should not be pitting ourselves against each other when we all quite clearly believe in fairness to all people in New Zealand.

    • 25 October 2011 at 8:19 am

      Well said, Allyson. *thumbs up*

      • 25 October 2011 at 8:48 am

        Thank you Frank. And thank you also for the opportunity to discuss this extremely important issue.

      • Deborah Kean
        27 October 2011 at 7:50 pm

        Thank you Allyson for your kind remarks about my son, I do hope you’re right about him!
        You’re absolutely right, of course, we are in agreement that all people need to be treated. You’re right too, that we should not be pitting ourselves against each other!
        I wish you all the best for the treatment you are presently under-going.
        Deb

  19. 27 October 2011 at 5:23 pm

    Allyson :

    Thank you Frank. And thank you also for the opportunity to discuss this extremely important issue.

    You’re welcome, Allyson. And I promise you that I will raise this at the next public meeting that John Key appears at. He’s not ducking for cover on this one. 😦

  20. Jena
    18 November 2011 at 1:06 pm

    America Cup campaign $36 million. It is about priorities; Kids living in poverty

  21. 1 April 2013 at 8:15 am

    Type1Diabetic :
    First of all, I take much offense to the “diabetic with kidney disease” comment. Diabetes is a genetic disease. Type 1 is completely genetic and an incredibly difficult disease to manage – I deserve my disease no more than you deserve yours and if I or any other diabetic were to get kidney disease then we certainly wouldn’t deserve it.
    Furthermore, I get that you’re upset and angry but that doesn’t mean you can put other people down. Saying that just because your one friend was able to choose not to be an alcoholic, all alcoholics can choose not to is a complete fallacy. I mean, good for him but you’re ignoring so many other factors. The “I did it so everyone can” is one of the most destructive and worst fallacies there are… Many drug users end up using either through massive emotional trauma – like being molested or through being raised in violent families where taking drugs was expected of them. They’re victims and should be helped (in an ideal world we’d help them before). You present this false dilemma – like the only option is to help you or help them and that’s a stupid dilemma. As a society, we should help them and you – you both deserve the help.

    I think if you read this whole post you would find that i agree that we all need help. Perhaps you should have read the whole lot before you posted?

    • Type1Diabetic
      1 April 2013 at 8:56 am

      I’m glad you decided that everyone deserves help so the second part of my comment can be ignored. However, the first part still is relevant – if you’re going to make comments about diabetes and diabetics then please pay careful attention to the type of diabetes and make sure you distinguish these. There’s a bunch of us out there who don’t appreciate being lumped in with the “fat and lazy” stereotype and who don’t even remotely deserve it.

  22. 1 April 2013 at 10:55 am

    Type1Diabetic :
    I’m glad you decided that everyone deserves help so the second part of my comment can be ignored. However, the first part still is relevant – if you’re going to make comments about diabetes and diabetics then please pay careful attention to the type of diabetes and make sure you distinguish these. There’s a bunch of us out there who don’t appreciate being lumped in with the “fat and lazy” stereotype and who don’t even remotely deserve it.

    Can you tell me where i said that type 1 diabetics are fat and lazy? I have 3 nieces and nephews who are type 1 diabetic and none are fat and lazy. I really think you need to read this post thoroughly before you jump on your bandwagon and start ripping in to me.

    My reference to diabetes was, why do diabetics get treated and not those with rare diseases. Aren’t we equally deserved of treament?

  23. 1 April 2013 at 10:56 am

    Allyson Lock :

    Type1Diabetic :
    I’m glad you decided that everyone deserves help so the second part of my comment can be ignored. However, the first part still is relevant – if you’re going to make comments about diabetes and diabetics then please pay careful attention to the type of diabetes and make sure you distinguish these. There’s a bunch of us out there who don’t appreciate being lumped in with the “fat and lazy” stereotype and who don’t even remotely deserve it.

    Can you tell me where i said that type 1 diabetics are fat and lazy? I have 3 nieces and nephews who are type 1 diabetic and none are fat and lazy. I really think you need to read this post thoroughly before you jump on your bandwagon and start ripping in to me.
    My reference to diabetes was, why do diabetics get treated and not those with rare diseases. Aren’t we equally deserved of treament?

    *treatment

    • 1 April 2013 at 11:28 am

      Unless I’ve missed it, no one (except Type1Diabetic) has referred to diabetics as “fat and lazy”. And it they did, I’d be removing their comment and banning them from my blog. I have a very short tolerance for trolls (not calling you a troll Type1Diabetic) that is measured in micro-millimetres.

      My belief is that National’s under-funding of health services often results in stresses on those affected. People end up fighting each other for limited resources when , in reality, the real enemy is sitting on the Niinth Floor of the Beehive, and his cronies occupy well-padded ministerial chairs with their well-padded back-sides.

      We do have the money to offer good medical care and specialised medicines for those who need it. It’s National that has made a conscious decision to focus expenditure elsewhere. Like subsiding World Rugby tournaments. Or a billion dollars on “consultants”. Or an unknown subsidy for Rio Tinto.

      The money is there.

      • Type1Diabetic
        1 April 2013 at 1:49 pm

        Allyson :
        I used to be a smoker. I gave up because I CHOSE to give up. I didn’t ask the government for free smoking patches. I don’t expect the government to help me if I screw up. That is MY decision.
        Is it ok to treat a smoker or an alcoholic but NOT someone like me with a disease I didn’t give to myself? Is it ok to treat a smoker with lung cancer but not someone with a genetic disease? Is it ok to treat a diabetic with kidney disease but not someone with a genetic disease?

        It seems to me there is a very clear implication in Allyson’s comment that diabetes isn’t a genetic disease and that diabetics who get kidney disease are like smokers who get lung cancer (IE it’s their fault they got it). Maybe the implication wasn’t intended, Allyson, but regardless it was offensive and I wanted to make sure that the error was corrected. I’m glad you know the difference between type 1 and type 2 but most people don’t and it can actually be harmful for type 1s. I’m not trying to “rip into you”, I’m just trying to dispel this horrible myth around diabetes.

        As for the funding, I fully believe the government should fund all (effective) treatments / cures for diseases. I’m certainly not arguing that any disease is more worthy of being treated than another.

        • Type1Diabetic
          1 April 2013 at 2:12 pm

          I take your earlier comment to mean that the implication wasn’t intended. So I’m sorry for misinterpreting your comment – but I think it was ambiguous and as such, I’m glad my comment is there so that anyone less educated than yourself, Allyson, may become more educated about the types of diabetes.

  24. Allyson Lock
    1 April 2013 at 1:59 pm

    Type1Diabetic :

    Allyson :
    I used to be a smoker. I gave up because I CHOSE to give up. I didn’t ask the government for free smoking patches. I don’t expect the government to help me if I screw up. That is MY decision.
    Is it ok to treat a smoker or an alcoholic but NOT someone like me with a disease I didn’t give to myself? Is it ok to treat a smoker with lung cancer but not someone with a genetic disease? Is it ok to treat a diabetic with kidney disease but not someone with a genetic disease?

    It seems to me there is a very clear implication in Allyson’s comment that diabetes isn’t a genetic disease and that diabetics who get kidney disease are like smokers who get lung cancer (IE it’s their fault they got it). Maybe the implication wasn’t intended, Allyson, but regardless it was offensive and I wanted to make sure that the error was corrected. I’m glad you know the difference between type 1 and type 2 but most people don’t and it can actually be harmful for type 1s. I’m not trying to “rip into you”, I’m just trying to dispel this horrible myth around diabetes.
    As for the funding, I fully believe the government should fund all (effective) treatments / cures for diseases. I’m certainly not arguing that any disease is more worthy of being treated than another.

    I was not giving offence, if you took offence it is of your own choice. I know the difference between Type 1 and 2. I never said anything about being fat and lazy. I did not say that diabetes was not genetic. And if you want to dispel the myth that all people with diabetes have it of their own volition, clearly you have chosen the wrong vehicle to air your frustration. Perhaps a blog relating to that subject in particular would be of better service to you? There is no point in trying to tell me what I already know about diabetes.

    • Type1Diabetic
      1 April 2013 at 2:43 pm

      I was not giving offence, if you took offence it is of your own choice.

      That’s stupid. No one chooses to take offense. What you said caused offense – through implications that you apparently didn’t intend – once you made clear that those implications weren’t intended, I retracted my offense. Either way, whether someone intends offense or not is irrelevant; rape apologists, as a random example, don’t intend offense but that doesn’t mean people who are offended choose to be or that you should be condescending to them.

      There is no point in trying to tell me what I already know about diabetes

      When I first “tried to tell you what you already knew” it was because your comment implied that you didn’t. After you clarified your statement and showed that the implication wasn’t intentional, I stopped telling you about diabetes.

  1. 12 April 2012 at 5:59 pm
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  11. 31 March 2013 at 11:48 am
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