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I have a 6 year old with end stage cancer DIPG, starship are…

Customer Question
I have a 6...

I have a 6 year old with end stage cancer DIPG, starship are bringing in a trial that excludes my daughter due to receiving radiation the only treatment available. My dau is very much alive. There is a scientist that has a gene therapy that could help my daughter. He has medical approval for his treatment from MOH, however due to what hesays is

Lawyer's Assistant: Because laws vary from place to place, can you tell me what state this is in?

The scientist says is a silly regulation the EPA will not allow. What chance have we got that this experimental gene therapy would be allowed to be used in nz on compassionate grounds. Sorry for delay I had to go to jeda my daughter.

Lawyer's Assistant: Has anything been filed or reported?

No

Lawyer's Assistant: Anything else you want the lawyer to know before I connect you?

Areyou in nz

Submitted: 1 month ago.Category: New Zealand Law
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1/2/2018
Solicitor: Chris The Lawyer, Lawyer replied 1 month ago
Chris The Lawyer
Category: New Zealand Law
Satisfied Customers: 23,396
Experience: 38 years qualified as a lawyer; LLB, MMgt and FAMINZ.
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I am a New Zealand lawyer based in Wellington and will help you with your question today. Please give me a minute to read the question

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Solicitor: Chris The Lawyer, Lawyer replied 1 month ago

Is the scientist referring to a United States standard?

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Customer reply replied 1 month ago
No the scientist lives in whangarei and is a private researcher not affiliated with anybody. Just has 20 years research completed on gene therapy. Here in nz the EPA is in nz. The MOH is in nz. I live in whangarei. My dau is diagnosed brainstem tumour
Customer reply replied 1 month ago
No I do not want to pay more money ATM, preference it all n writing so I can go they it later
Customer reply replied 1 month ago
Can I use compassionate grounds to allow the scientist / dr to administer the gene cancer fighting therapy? Are you still there?
Solicitor: Chris The Lawyer, Lawyer replied 1 month ago

Thanks, ***** ***** this. The Environmental Protection Agency deals with potentially hazardous biological organisms, which is why I suspect they have regulations in place preventing the use of this therapy.They do have an approval process for using new organisms. Have you actually made an application as yet?

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Solicitor: Chris The Lawyer, Lawyer replied 1 month ago

I suspect that new therapies like this may not be specifically covered by regulations but I would have thought that if the hospital board has approved use, then the EPA would have been involved. Do you know if the hospital board has talked to the EPA about the use of this therapy?

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Customer reply replied 1 month ago
the scientist, not me did and they refusal dr Sinclair believes is unfounded. However I have a bigger problem to hand and do not have time to fight his cause. Is there anything going that can be done on compassionate grounds humanitarian grounds??? Can I serve an injunction to him to force him to inject it into my daughter. Where is the loophole. There is no time for me to fight for that scientis
Customer reply replied 1 month ago
Starship are getting a trial in that newly diagnosed brainstem tumours can avail of, it cannot include my daughter as she has been radiated. Pls look up avaaz petition clinical trial at starship for DIPG. My petition has nearly 2000 people.
Solicitor: Chris The Lawyer, Lawyer replied 1 month ago

It may be possible to seek judicial review of the decision, and seek urgent interim relief, which would have the effect of an injunction. These sorts of applications can be prepared and filed fairly quickly although as you will realise at this time of the year the courts are not as available. But there are judges on standby.

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Customer reply replied 1 month ago
Due to circumstances would judges be available for compassionate grounds? Nothing has been prepared or filed. I have no representation. I need someone to help my cause. I have documentation from scientist for reasoning of EPA rejection. But I would rather focus on getting some therapy for jeda my daughter and compassionate grounds could be the only way. Do you have any compassionate grounds experience?
Solicitor: Chris The Lawyer, Lawyer replied 1 month ago

Obtaining therapy on compassionate grounds is not really a legal issue but depends on those in authority being prepared to bend the rules. There isn't really a legal concept of a remedy of compassionate grounds. The answers are unfortunately usually political and that if you can persuade a politician or a very senior civil servant to make a decision on compassionate grounds, then this therapy may be permitted. Have you approached any political figures about this?

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Customer reply replied 1 month ago
The gene therapy has been approved for use medically in nz but not used as a treatment due to modified gene. EPA has disapproved this. Whether both governments have spoken to each other, I do not know. My thing is that I want approval to try this experimental gene therapy on my dying daughter. Is there a loop hole that this is possible please?
Customer reply replied 1 month ago
I have not approached a politician about this particular issue. What politian would be the best humanitarian one
Solicitor: Chris The Lawyer, Lawyer replied 1 month ago

The only suggestion I have is that if your scientist has the treatment available, to just go ahead and use it. If anyone tried to prosecute you it would be difficult to oppose any penalty which had any meaning. You are probably aware that in the debate about the use of cannabis, that many go ahead and use it even though it is illegal. Gene therapy would be a little different of course.

The Minister of Health is

Hon Dr ***** *****

Contact Email

*****@******.***

Phone

+64 4(###) ###-####/p>

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Customer reply replied 1 month ago
Thank you for that advice. The petition on line is going to ***** *****e. My many supporters have written in to minister about getting a clinical trial into starship jeda can avail of. But I have not approached the minister about having found my own trial. Not sure how to proceed.
Customer reply replied 1 month ago
Can I ask you further questions as time goes on? I must dash, you have been help thank you. Can I definately have a written copy of our correspondence please. Or will it just come automatically? I want my hisband to read it later.
Solicitor: Chris The Lawyer, Lawyer replied 1 month ago

You could try your local member of Parliament as well, but generally going to the Minister is best. The petition will no doubt go to him, but if you are seeking an exception on the compassionate grounds, then a more personal approach may be more effective.

I would suggest just trying to ring his office or even sending an email, emphasising the urgency.

You can print off the exchanges of messages at any time. The question remains open until you have accepted the answer, and you are therefore free to ask any further questions

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Customer reply replied 1 month ago
we did think about just doing anyway but worried it could lead us open to prosecution for potential medical abuse or experiementation? Or something? Pls tell us what could happen? Our child has nearly died 3 times and each time she rallies as she wants to live so much. We do many alternative therapies and something is working as we are about 6 months beyond the norm. We really have little time.
Solicitor: Chris The Lawyer, Lawyer replied 1 month ago

There would be risks but you would need to balance those against the possibility it may work. But I dont want to suggest that you should break the law of course. Have you thought about contacting the papers or TV news?

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