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Permission to save your own life?

  • March 7th, 2011

Lloyd Morrison posted on his Facebook page about a heartwarming, inspiring, but puzzling story from The Australian. It reports on young mother Natalie's near miraculous response to an experimental German drug treatment for leukemia. Natalie's fiance Andy arranged for her to qualify to become part of the study.The headline suggests it could cause a rewrite of "treatment rules".

But the report does not touch on the 'rules'. The law around drug experimentation is inexcusable.  I do not understand why people have accepted the huge intrusion on freedom that lies in prohibiting access to new drugs until they've been through years of testing.

For Natalie death was considered imminent and near certain. She and her fiance were willing to pay for treatment. Why should she have to qualify for a study, gain the privilege of being part of an experiment, to have this treatment.

The Australian does not explain. Perhaps in this case it was unavoidable, perhaps the drug is rare, and the team who can administer it are specialists. But it seems that often people are denied the chance to buy treatment simply because drugs are not proven. When the alternative is death, why should that be of the slightest interest to the law? The huge cost and delay of getting drugs through the registration process may be condemning thousands of Natalies who do not have husbands as effective and persistent as Andy Fairclough.

Why should not people be free to consent to any treatment they want, at any stage of testing, if their alternative is death anyway. The law can not compel them to have treatment, no one is any longer punished for attempting suicide, so what is the moral foundation for banning people at death's door from buying and using any drug they want?

This is not a challenge to the role of Pharmac – in my opinion they do a great job for New Zealand. Their effciciency masks the consequences of our continuing decline in relative wealth. It enables us to keep access for most of the population to drugs that would otherwise be drifting out of our reach.  Nor is this a demand for more to be spent on health.  I commend Tony Ryall's lifting of what I'm told was Annette King's edict banning public hospital involvement in administering drugs brought in privately by desperate families.

I'm thinking more about a human rights challenge to the incredible bureacracy around health experimentation, and the time-wasting "ehtics" committees, at least so far as they affect those with a poor prognisis. What about allowing New Zealand to become a destination for medical tourists, looking for treatments the FDA or the Australian government will not allow them to have. We could supervise for integrity, and fully informed consent. Leaving it to the individuals and their families is consistent with the right to suicide (and our freedom to drink or eat or motorcycle or mountain climb ourselves to death).

I would not hold my breath for anything useful out of our two bodies with the Orwellian false names – the "Human Rights Commission", and the "Human Rights Review Tribunal", but it would be interesting nevertheless to see if and  how they would rationalise away the right of people to seek out treatment they believed in, when condemned to die, using their own resources, without going overseas. It is paradoxical that we have less freedom than countries without the lip-service law we have, who have not given such enormous powers to their medico-legal establishment.

Perhaps reasonable arguments could be drawn from our Human Rights Act prohibition on discrimination againt those with disability. Maybe it could be founded on sections 8, 10 and 11 of NZBORA. It could be useful to run such a case through to our Supreme Court.

I think Canada has the "green eye" policy of prohibition writ in law. I should check, but I think t is simply illegal to use your own money to get medical services outside the state system. I must see how the priests on the Canadian Supreme Court have rationalised their rulers' usurpation of the individual right to do whatever one wishes that does not harm others, to say nothing of the right "not to be deprived of life except on such grounds as are established by law and consistent with the principles of fundamental justice" (as it is expressed in section 8 of NZBORA).

Comments

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  • Christine Murphy
  • March 7th, 2011
  • 11:05 am

It all seems so simple does it? Is it really that easy to reconcile "desperate families" and "informed consent". And what of time lines, you say "we could supervise for integrity", that is what we do now, how long would it take in your world, and by whom would it be done?
As for public hospitals, when a drug, about which the physicians necessarily know little, is complicated to administer, or goes wrong, which of our limited resources are you going to divert to do this? You are happy to take care away from a family wanting a well known treatment, and give it to a family wealthy or desperate enough to buy something themselves. I take it you will personally contact the families that miss out and explain that money talks.
If they want private health care, which is what buying unapproved drugs is, let them fund it themselves. Your mates in the private insurance market will be happy to help out right? No, didn't think so. And even if they did, if it went wrong would you rush them to a public hospital to pick up the pieces? Thought so. And again someone else misses out. or do they all have to sign a do not resuscitate order?
I am sure you know law, but perhaps you should leave health to those who know a little more than you do.

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I love you Christine Murphy. I do not know whether you are part of it, but I  couldn't have written such a piercing spoof of  establishment medical conceit –  "perhaps you should leave health to those who know a little more than you do".

How dare any non-doctor suggest that dying people be free to make their own decisions in NZ instead of having to go overseas to do it!

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  • Kiwiwit
  • March 9th, 2011
  • 9:49 am

I think the most interesting comment in your blog is “[Pharmac’s] efficiency masks the consequences of our continuing decline in relative wealth.” If you accept that “efficiency” equates with “monopoly” then I agree. One could extend this argument to ACC, Kiwirail, and all the other state monopolies. The point is, New Zealanders are living on borrowed time and whether it is due to the cost of the Christchurch earthquake, the dismantling of Pharmac required by free trade agreements, oil price rises, or any of the other factors that are now hitting our economy, these cosy state monopolies and feather bedding practices we depend on to mask our decline in wealth are about to come to an end. As they are in Ireland, Spain, Portugal and Greece right now.

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  • Christine Murphy
  • March 9th, 2011
  • 11:28 am

 I am pleased to provide amusement for you Stephen, even if you didn’t read what I actually wrote. I didn’t actually say that “dying people [shouldn’t] be free to make their own decisions in NZ”. I just questioned whether the tax payer should fund it.What I ask you, though I note you feel no particular need to answer questions put to you, is who should miss out, and why?In real terms health funding is not growing. You suggest adding complex and untried new treatments to that picture. Therefore something has to go. What precisely?Plenty of non-doctors are able to sensibly comment on health. Your post just doesn’t place you amongst them. You apparently failed to consider even the most obvious flaws in your suggestion.
I am pleased to provide amusement for you Stephen, even if you didn’t read what I actually wrote. I didn’t actually say that “dying people [shouldn’t] be free to make their own decisions in NZ”. I just questioned whether the tax payer should fund it.

 
What I ask you, though I note you feel no particular need to answer questions put to you, is who should miss out, and why?
 
In real terms health funding is not growing. You suggest adding complex and untried new treatments to that picture. Therefore something has to go. What precisely?
 
Plenty of non-doctors are able to sensibly comment on health. Your post just doesn’t place you amongst them. You apparently failed to consider even the most obvious flaws in your suggestion.

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Christine – I did not go through you comment interpolating mine because I was in a hurry, and gobsmacked by the compression of so many of the establishement's objections in one comment.

But in courtesy I should have pointed out that nowhere did I suggest that anyone should pay for non-official or non-registered treatments other than those who want to try them. You want me to comment on each of  your arguments. I ask you to give the same kind of attention to what I wrote. Throughout I said and assumed that people who want more than the state has tested and approved should pay for it themselves. 

You did raise the red herring of possible recourse to the state system if a course of treatment goes wrong. That is scarcely material. Under our current system a dying patient will be cared for by the state whatever they are doing to themselves, whether they follow doctors instructions or not, and whether they exacerbate their treatment costs or not. Any hospice or tertiary care cost imposed by a drug that is non-standard is not likely to vary much outside the normal range for people dying. Indeed there is an argument that people electing to try new treatments at their own cost should be credited with the saving their private treatment allows the state system.

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