Hard News: Helen Kelly's letter
74 Responses
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The ministry’s response.
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She should give sativax a go. And there has been one case where it has been funded by pharmac.
http://www.stuff.co.nz/national/health/76355498/medical-marijuana-funding-approved-for-northland-woman
Although it looks like it took from at least October to January to get approval. -
Rosemary McDonald, in reply to
The ministry’s response.
We have similar letters on Misery Of Health letterhead saying basically the same thing.
"You have not provided us with sufficient information in a form that we require.
The fact that we have failed to specify the exact criteria and the exact information we require to process your application is your fault, not ours. So, tough shit."We, with the help of a MOH contractor, put in numerous applications for funding for a particular piece of equipment. They would have funded, quite happily, a more expensive piece of equipment, one that was in their 'book'...but that piece of equipment would not have been fit for the purpose intended. For numerous reasons...all of which we had to go into with extraordinary detail. We needed Doctors letters and OT letters and even support from CYF (because we were foster parents at the time).
This process took 18 months.
When I heard that Helen had to apply to the Misery of Health for this...I thought..my god...she hasn't got 18 months.
I get that there are protocols Russell....but make no mistake about this...the Ministry of Health has an army of petty minded bureaucrats that simply love this kind of thing.
Even if every single box had been ticked and every single minutiae had been covered they would have bounced this application back.
Because that's just who they are.
Kia Kaha ,Helen.
Try again...
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The prime minister, and his previous ministers of health are all incompetent buffoons. Drugs r bad (tm).
Except if your drinking your drug. Then its good.
Key
http://static2.stuff.co.nz/1329971788/319/6470319_600x400.jpg
http://www.stuff.co.nz/content/dam/images/1/4/e/q/6/9/image.related.StuffLandscapeSixteenByNine.620x349.14epo3.png/1429477947845.jpg
Bolger
http://www.stuff.co.nz/content/dam/images/1/4/e/q/y/7/image.related.StuffLandscapeSixteenByNine.620x349.14epo3.png/1429477947845.jpg
English
http://www.stuff.co.nz/content/dam/images/1/4/e/r/g/m/image.related.StuffLandscapeSixteenByNine.620x349.14epo3.png/1429477947845.jpgand not to miss the other hypocrites
Cunliffe
http://www.stuff.co.nz/content/dam/images/1/4/e/q/i/b/image.related.StuffLandscapeSixteenByNine.620x349.14epo3.png/1429477947845.jpg
Clark
http://www.stuff.co.nz/content/dam/images/1/4/e/r/4/z/image.related.StuffLandscapeSixteenByNine.620x349.14epo3.png/1429477947845.jpg -
Commenting from a State with legalized medicinal (and recreational) cannabis, stories like this are really sad. It's so strange that a country like NZ, generally thought to be liberal minded if not terribly progressive this century, takes such a hard line on this issue. Come on in, Pete - the water's fine.
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I don't know the cause of Ms Kelly's lung cancer. Often it is a direct result of smoking cigarettes. The government of New Zealand sanctions the use of tobacco products that cause dramatic and negative effects on the population's health and wellbeing. It has a conflict of interest in that it also produces substantial revenue from taxes and excise duties on the sale of the product.
How curious it has such a pious attitude to cannabis - when the science overwhelmingly shows cannabis is exponentially less harmful or costly than tobacco (and alcohol - which also has a free ride).
Give the woman a break. She's fatally ill.
It's hard not to make the corelationship between the government's opposition to Kelly's application because, well, she has publicly opposed them on trivial matters like workplace safety and zero-hours contracts - which may be unfair but where there's smoke, maybe there's fire man. -
Unless they were residing isolated in a dark cave, a politically aware ‘maze bright’ bureaucrat would have seen HK’s application coming from a mile away.
They would have known that Helen simply does not give up. And, that she will do her work for social justice in a very public way.
An intelligent bureaucrat would have sat around a table with Those Who Can Make This Happen and said…"sooner or later NZ will have to approve applications like this…why not let this pesky woman have a win here and expedite this? Or we are going to look like a miserable bunch of a’ holes who are making this personal."
Unless it is.
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Russell Brown, in reply to
I don’t know the cause of Ms Kelly’s lung cancer. Often it is a direct result of smoking cigarettes.
In her case, it's not.
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Sushila Butt, in reply to
mpledger , you mentioned about Pharmac funding sativex to Alisha and i am her mother , this is incorrect , it is DHB who has funded it from their non pharmeceutical budget. Pharmac is useless like Peter Dunne and shouldnt exist on taxpayers money. Peter Dunne goes overseas and uses taxpayers money on luxury limosuine and also he cant pay his own laundry, we taxpayers pay for it . When i read about Helen Kelly my heart goes for her as my daughter was in the same situation, and your advice for trying sativex , i also agree . My daughter was approved to use sativex in a months time by the minister and she was on sativex since September , I hope everything goes well for Helen Kelly
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Sushila Butt, in reply to
I will advice Helen Kelly to try sativex , The minister knows her case and it shouldn't take a day to approve her to use this medication , as it is legal to use in NZ , and if it does Peter Dunne has real problem and he should be chucked out of the parliament as a associate minister of health . As I read Helen Kelly is using Morphine and the cost of Morphine is expensive , the DHB should pay for her cost of her sativex replacing morphine . At least try it and if it doesn't work then you know. Please take this as a advice.
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Good on you Russel for valiantly ,comprehensively & patiently shining a light on the dickensian & kafkaesque legislation that presumes to call itself a policy [ ie the MOD act ].Hard to know where to start when critqueing this utterly shambolic hypocrysy & socio-cultural dysfunction .....lookin at the calendar now - are we really living in the 21st century !!
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Russell Brown, in reply to
When i read about Helen Kelly my heart goes for her as my daughter was in the same situation
Thank you for commenting Sushila, and my best wishes to you and your daughter.
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Sofie Bribiesca, in reply to
Even if every single box had been ticked and every single minutiae had been covered they would have bounced this application back.
Same with my Doctors application for a surgery. Sent back as insuffficient and once we pushed it straight back to them with one minor detail, my wish was granted.
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Sofie Bribiesca, in reply to
Hi Sushila, how is Alisha ? I read she improved dramatically. Do you think sativex could be an alternative way over epilepsy drugs like Tegretol ? One drug I would love to eventually eliminate from my life. Anyway glad to read you got sativex. Kia kaha.
ok getting coat....
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Further to the government's "we're never changing the law" branding position. From a Wellington insider:
FYI, a former staffer in Simon Power's office told me back in 2010 that when the Law Commission review into drugs came out, Eagleson called Power and said, literally, 'Don't you fucking dare.'
So this is what we're up against. And it's what makes pinning it all on Dunne such a distraction. New Zealand's drug policy has improved about as much as it can with the law-reform fatwa in place. We go into UNGASS 2016 as one of the enlightened countries. But we'll never be able to actually do what's right in our own domestic policy while the present, deeply cynical political leadership persists.
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linger, in reply to
One episode of Wendy Zukerman’s Science Vs podcast surveyed the evidence for effectiveness of medical marijuana, including against epilepsy. (For pain relief, yes; as a cure for cancer, probably not -- no consistent effect in lab and no in vivo human study at all; for epilepsy, maybe, but not much evidence beyond anecdote. Zukerman deplored the lack of evidence resulting from political pressure against approval or funding of research into possible positive effects.)
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Russell Brown, in reply to
Same with my Doctors application for a surgery. Sent back as insuffficient and once we pushed it straight back to them with one minor detail, my wish was granted.
I think the best thing for Helen and her doctor to do is get those assays pronto – stop being end users and call Bloom Farms directly. And then find medical ethics experts who will not only support their case but rain down judgement on the rest of the criteria.
The hospitalisation criterion needs to be simply rejected with expert backing from a palliative care specialist. It is unreasonable and should not be allowed to stand.
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Russell Brown, in reply to
as a cure for cancer, no
Slightly surprising, given the trials on treating fast-growing brain tumours. It's not conclusive, but it's way better than anecdote. Stronger than the epilepsy evidence, from what I've been able to make out.
And I say that as someone who's been pretty sceptical about many medical cannabis claims.
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The studies Zukerman was commenting on were more scattershot, looking at effects on various different types of cancer in mice. Doesn't rule out the possibility of some effect against some types of human cancer -- but doesn't support it at all either. (Also, behind that label "no consistent effect" is the fact that some of the mouse tumours showed faster growth...)
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Russell Brown, in reply to
The University of London study – 50/50 THC/CBD in conjunction with radiotherapy for brain tumours – is quite an attention-grabber.
It’s being taken seriously in some surprising places:
Researchers have been studying the medical benefits of marijuana for years, but this month marks the first time the National Institute on Drug Abuse (NIDA), a research group funded by the US government, has acknowledged that cannabis extracts may help kill certain cancer cells and reduce the size of others.
NIDA quietly revised a page on its website titled, “DrugFacts: Is Marijuana Medicine?” this month to state that, “Evidence from one cell culture study suggests that purified extracts from whole-plant marijuana can slow the growth of cancer cells from one of the most serious types of brain tumors.”
The update acknowledges research published last November in the journal Molecular Cancer Therapies by scientists from St. George’s, University of London. The researchers found that THC, the main psychoactive ingredient in weed, and cannabidiol, an extract, caused “dramatic reductions” in the growth of glioma tumors in mice. Glioma accounts for 80 percent of malignant brain tumors in humans.
I have a friend battling glioma, so this is very relevant to my interests.
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linger, in reply to
The “in conjunction with radiotherapy” part is a fairly important concession – because one thing that is quite well established is that marijuana can moderate negative side effects of conventional cancer therapies (e.g. pain and appetite loss). So marijuana may allow more aggressive chemo or radiation with greater chances of success; but that's different from claiming that marijuana by itself can cure cancer.
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Russell Brown, in reply to
So marijuana may allow more aggressive chemo or radiation with greater chances of success; but that’s different from claiming that marijuana by itself can cure cancer.
No, it’s more than simply making other therapies more bearable. From the first link in my comment:
Senior author of the new study, Dr. Wai Liu, of the University of London, says the one-two punch of THC and CBD is really what makes cannabis yield such impressive effects.
“We think this is due to the different pathways that these cannabinoids hit,” Liu told Medical Daily in an email. “Specifically, THC works via receptors, whilst CBD may not need them; consequently, using them together results in a ‘priming’ effect in tumour cells, making them more sensitive to the ‘cell killing’ effects of irradiation.”
There are one or two other studies suggesting the same thing.
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Scott A, in reply to
What puzzles me is why there such a profound opposition to medicial marijuana from the Beehive? Is it really that much of a vote losing issue?
I guess Curia would know...
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Russell Brown, in reply to
I guess Curia would know…
I've said before I think this is how any campaign has to go: to make the issue a political liability for the government. If Curia says that's the case, things will change.
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Well frankly I’m not surprised at the Ministry’s response, though I am still confused about their reasons. A couple of years ago I attended a health select committee hearing regarding medicinal cannabis, on behalf of an excellent submission by William Rae, in my capacity as a cannabis researcher.
Prior to attending this committee hearing I contacted the relevant official in the Ministry and spent some time discussing Mr Rae’s submission and the approach I would be taking on his behalf. At that time I felt there was a sense of mutual agreement about how meeting might proceed, i.e. in the context of a positive and rational approach to this issue.
Upon attending the hearing and sitting next to the official I’d spent an hour discussing matters with, I was amazed at the Ministry’s opposition to almost everything we had discussed and to the official’s complete ignoring even of my presence.
I was left with the sense that the Ministry has a particular view of medicinal cannabis, which is most likely mediated by officials’ understandings of how the current government would not welcome any advice that would run contrary to their stated position: pretty much what former minister SimonPower said. This leaves me feeling terribly sad for people in the position of Ms Kelly, and more than a little angry. The Ministry’s approach is, in my view, an abuse of power, and the more strongly they are called on it the better.
FYI regarding Sativex, IMHO it is potentially unsuitable for some pain relief issues and also nausea, as it is relatively slow acting. This has been noted in the UK, where a GP supported his patient to import raw cannabis instead. See:
http://clear-uk.org/legal-medicinal-cannabis-in-britain-achieved/
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