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possible letter to the Australian Health Minister

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by alex3619, Jun 30, 2010.

  1. alex3619

    alex3619 Senior Member

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    Hi Jon

    I'll look into this in a day or two and get back to you. Thanks for the suggestion. Every avenue is worth looking into.

    bye
    Alex
  2. Megan

    Megan Senior Member

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    Hi Alex,

    I applaude your efforts to do this stuff as I know how hard all this can be with CFS.

    I have to say though that I agree with the concerns of Tina and Victoria. I just think the tone was a bit angry (aren't we all!) and the letter seems to assume they are 'against us'. eg. it assumes there is no consultation with world experts happening. This may or may not be true (to my amazement they have for example banned us from donating blood). The tone could just serve to get people off side and makes it easy for them to dismiss us as a bunch of crazies. They get letters like this all the time. It is important that statements are backed up with credible references and probably not really the role of patients to be lecturing policians on scientific matters when we are not scientists. We aren't really in a position to talk about unreleased studies as, with one exception, most of that is based on roumor. If I was a Minister, or staffer in a ministerial office I would be taking my scientific advice from medical people as patients like us are just not seen as qualified to do it.

    Generally speaking I think a better approach is to make shorter statements and provide them with credible references as paper attachments so they don't have to look up the internet, otherwise they just won't bother reading them (assuming you are doing a hard copy letter). I thought the WSJ or the new Nature articles were both better references than the Science one as they made it clearer that there had been DHHS interference in the scientific process.

    The biggest problem I see here is that the second positive study has not been released yet. I would think the best time to move would be after that happens, though we have the obvious problem that this is being held back. Without this we are left quoting the original Science article and the WSJ, while they will be able to quote back to us four negative studies. The issue of suppression of the NIH study is really an American issue so it is hard to see what we can do about it in Australia. I would expect that they are also taking much of their advice from Professor Andrew Lloyd who has been very negative about the XMRV findings from the start, though I would hope they are listening to others also.

    I am thinking the best strategy we could follow at the moment is to do our homework and be prepared to act on this once one of the two positive studies is released. Some ideas:
    * We should be expressing our concerns to the CFS Society of Australia, asking them to be ready to speak out on our behalf, either now or as soon as the positive studies are released
    * Suss out through any connections we may have eg. politicians or medical people or others as to the best way to go about this type of stuff
    * Speak to some of the AIDS activists who were around in the beginning with that one, I expect we could learn a lot from them
    * Be ready to contact journalists, as well as politicians, regarding the issue as they will be less worried about trying to keep things under wraps. And politicians respond to journalistic pressure (eg. I think the ABC Health Report owes us another story on XMRV after the one sided one they did with Myra McClure)

    In terms of what we should be demanding, like others have said I think testing covered by Medicare should be at the top of the list, though we still have the problem that we know there are no validated tests yet. I would agree with many of the other things you are asking for but again it is might be premature to be requesting these at this stage.

    I hope I will follow up on some of my above ideas myself, probably following up with CFS Australia before contacting outsiders about it. I need to put my money where my mouth is, so I thank you for spurring me on.

    Anyway, apart from my 2 cents worth, as others have said it's your letter and you are free to write what you want. More people doing more things from different angle can only be better than us all just sitting in our lounge rooms watching the net.

    As to what impact the election might have on all this? I would suspect with the current state of affairs it is not helpful to us as politicians are more likely to want to bury things during this time. On the other hand if the positive studies are released prior to the election it would give us a much stronger hand to demand a response from them as they would then be concerned with media coverage. Perhaps we should be as ready for this as possible. Lets hope those studies make it out before the election and then we can hit the media!
  3. Megan

    Megan Senior Member

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    PS.

    I think it is now becoming apparent from the Alter leak, and the 'videos' that we may not just be dealing here with XMRV but also with other MLV like viruses. If this is the case then any requests for further research would need to be extended to cover these other possibilities as well.
  4. alex3619

    alex3619 Senior Member

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    Hi Megan

    This is a very good point and I have been thinking about it but there is absolutely nothing published on this yet.

    Bye
    Alex

  5. alex3619

    alex3619 Senior Member

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    Hi Megan

    Thank you for your thoughtful reply. I'll try to respond to most of the points you have raised.

    First I'ld like to say this is not about just getting our health minister to act. This about raising awareness, even if they think I am a crazy, if the hard confirmation is published they might take another look, and my letter will be on file. This is also being sent to every health and shadow health minister I can find (I might finish my list today) so that everyone is aware of the issues. This is also about having evidence that every minister was aware of the issues, or could have been if they were doing their job. I am looking to the future, not just today's response.

    I don't see my tone as angry, but I am biased of course. ;) However, angry probably gets more attention in political circles, as long as there is reasoned arguement, so I don't have a problem with it.

    I have absolutely no problem with others sending their own letters with different tones and points of view. The more the merrier - just leave a public trail.

    The Federal government had nothing do do with banning blood donation so far as I am aware (although I did ask them to). It was the Red Cross.

    Shorter, pointed, referenced statements have stronger immediate political impact. That is not all I am trying to do. Please send your own short statements and encourage others to do so.

    I had been waiting for a second study to be released. The DHHS interference is the reason I am posting this now.

    I will be looking at all current articles as my reference prior to releasing the email. The Science article was the only one at the time, and there is no point in updating my letter on this until just before release because things can change on an hourly basis.

    I have already made tentative comments to MS and autism groups. The autism groups didn't reply, the MS did. I have been thinking about HIV activists, but I also think that the prostate cancer activists have a stake in this as has been suggested on other threads. So might groups involved with GWS, fibromyalgia and related conditions. I am even considering making contact with the adult entertainment industry, as a "new" retrovirus has to concern them too.

    I have reached out to the ABC multiple times now, and have yet to receive any response. That second paper is critical I think.

    I do not expect them to act on my requests. I hope they file them and when they realise how serious this is they have at least some place to start with preliminary planning and policy formation. I am not naive enough to think they will do what I ask, but I do think that if we don't ask it will take even longer before something happens. If nobody expresses concern, why should they act? I mean, it will be obvious even we don't care.

    The comment on Medicare I agree with, I sometimes have a tendency to not state the obvious because, well, it is so obvious. Its probably better to make it explicit however, so I hope to add it to my email.

    The election might well distract everyone from doing something now, or paying proper attention. I am sending it to shadow ministers for several reasons however. They need to be aware of the issues if they win (it is the next goverment, not the current one, that will be making major decisions on this, so I am thinking several years in advance). This might also become an election topic. If they are aware of the possibilities, and a major confirmation is published, maybe it will become an election issue. Can you imagine the impact that having CFS as an election issue will do to the debate world-wide? Its a long shot, but then I am not pursuing just one strategy.

    Your suggestion that we should be ready to hit the media as soon as a major finding is published I am totally in tune with. :D

    I am also not just using this thread for advice. It is supplying others who might be interested with different points of view so they can formulate their own letters, in their own styles, even on different topics or with vastly different emphasis. This is also an electronic trail. I am not naive enough to think that if there is a political scandal somewhere somewhen then reporters wont go trolling for information - and they will find PR. This is a longshot of course, but I am a firm believer in covering all the bases.

    In regards the science, I have trust in the scientific process, and I am happy with the quality and integrity of many of the researchers. They don't need me actively batting on their side, although I am happy to support them should it become necessary. It is in the political arena that the real battle lies, and I am trying to turn my attention there. Having read The Prince. The Discourses, The Art of War and many others, I am simply trying to do what businessmen have done with military strategy - apply it to a new task.

    Bye
    Alex

  6. Melodie

    Melodie Guest

    Hi Alex

    Good to see you're still going strong! I understand what you are doing and where you are coming from and also applaud your expertise. Having scientific quals adds credibility to your letter.

    My concern with the Aus gov if and when they give funding, is that it will be for useless bloody Wesslian studies. Well Dr Lloyd must have been receiving funding (was it through the, I can hardly say it, Fatigue Clinic?) so far for GET and CBT. If me/cfs Aus is advising the government, are we to trust that they are going to make it clear about the pitfalls of not replicating the Science study with exact methodology (and cohorts)?

    Also, another idea (no need to give me feedback btw, just keep on with what you're doing) for one of your letters: after they have established the prevalence of XMRV in aus, and start looking at testing stored blood samples, the blood bank etc, these can be an invaluable resource for retrospective studies. Research can be done using these repositories to determine effectiveness of retroviral drugs etc. For example if they can find someone who had HIV and also XMRV (detected from an old stored blood sample), they can test them now for viral load etc of XMRV after having used HIV drugs for some time. This will help determine how effective the HIV drugs were on XMRV. This was mentioned on another thread so I guess you read it. The point that could be made to gov is not to discard any of these old blood samples.

    I will be busy for a few hours, but if you have a shortish list - say ten or fifteen different sources - of email addresses you need please ask.

    Can we please list these email addresses for everyone to use here.

    For anyone: the Federal MPs emails are in a pdf file on this page: http://www.aph.gov.au/house/members/index.htm

    Scroll down a little to:

    " Contact list of Members of Parliament

    * List of Members, Vol 85, 1 July 2010 (PDF – 241 Kb) " and there is the list.

    You may need to enlarge the font cos there are dots between first name, last name and "MP" on the email addresses.
  7. alex3619

    alex3619 Senior Member

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    Hi Melodie,

    Replying is not a burden and doesn't distract from my letter writing, as this is a different part of my brain and so qualifies as a rest. Trolling through lots of government nonsense wears me out quickly, so it is taking longer than I hoped, although it may be done in a few hours. I can only do that kind of thing for ten minutes at a time, my brain doesn't like working that way. :( All contact addresses will be posted with the email, as this is actually a part of my message, listing everyone I have contacted with this round. The health ministers have to know who is being informed. Any that come back as undeliverable I will also make not of and comment on this thread, hopefully after I have tracked down useful addresses.

    My request for research is specific to XMRV not CFS in general. Also, while I have liked the idea of using stored blood samples, it is becoming clear there is often a problem with them. While I also like the idea of broader ME and CFS research being funded, this is not my current focus. I have a feeling that biopsychosocial research into CFS may be finally coming to an end, although this could also be wishful thinking - they may just switch target populations.

    Bye
    Alex
  8. alex3619

    alex3619 Senior Member

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    Hi, I've identified email for all the ministers so now I need to find media outlets. I should be sending the email within 24 hours. Bye, Alex
  9. alex3619

    alex3619 Senior Member

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    main letter

    ----- Original Message -----
    From: Alex Young
    To: nicola.roxon.mp@aph.gov.au
    Cc: Peter.Dutton.MP@aph.gov.au ; deputypremier@ministerial.qld.gov.au ; caloundra@parliament.qld.gov.au ; dp.office@tebbutt.minister.nsw.gov.au ; office@perry.minister.nsw.gov.au ; office@primrose.minister.nsw.gov.au ; office@sartor.minister.nsw.gov.au ; northshore@parliament.nsw.gov.au ; gallagher@act.gov.au ; burke@parliament.act.gov.au ; daniel.Andrews@parliament.vic.gov.au ; david.davis@parliament.vic.gov.au ; michelle.obyrne@parliament.tas.gov.au ; jeremy.rockliff@parliament.tas.gov.au ; greens@parliament.tas.gov.au ; minister.health@health.sa.gov.au ; morphett@parliament.sa.gov.au ; kim.hames@mp.wa.gov.au ; kwinana@mp.wa.gov.au ; minister.vatskalis@nt.gov.au ; matt.conlan@nt.gov.au ; 60minutesmail@nine.com.au
    Sent: Sunday, July 04, 2010 5:34 AM
    Subject: Major risk to Australian Public Health: XMRV


    Mr. Alex Young
    (Contact details deleted, AY.)

    The Hon Nicola Roxon MP, Minister for Health and Ageing,

    Re: Xenotropic Murine Leukemia-related virus Virus

    There might be two million Australians already infected by the transmissible retrovirus XMRV, many of whom are disabled, all of whom are at risk. Even a conservative estimate would now have to be 660,000 otherwise healthy Australians infected with XMRV. A leaked report of confirmation of the original findings from October 2009 from studies by the US FDA and NIH confirm the prevalence, but these studies are not published yet. Animal studies support that this virus is transmissible through blood transfusion, and it is confirmed that XMRV is in the blood supply. This virus is associated with both prostate cancer and chronic fatigue syndrome.

    I have sent you two previous emails about the risks from the transmissible retrovirus XMRV. I have requested that you commence planning to deal with this potential pandemic but that acting on this planning had to wait on the science. The science debate on prevalence and transmissibility is largely over, the time to act is now. Even if pathogenicity is later disproved, this is not something we can delay acting on.

    A copy of this email is being sent to every health and shadow health minister in Australia for whom I can find direct contact details. It is also being sent to selected media outlets and CFS patient information forums. A full list is included at the end, as is a copy of both of my previous two emails. I intend to send a similar updated email after every major new scientific publication. There are reports of many more studies awaiting publication . Even more studies have commenced.

    This action is prompted by the USA DHHS delaying publication of two important scientific papers on this topic that were about to be published and have passed peer review:

    http://www.nature.com/news/2010/100702/full/news.2010.332.html?s=news_rss

    One of these papers has since been published, but the other hasn’t.

    Just to recap the evidence, pathogenicity of this virus is not proven, but transmissibility is all but proven, as is prevalence. The original finding published in Science Express on 8 October 2009, which showed a high association between XMRV and CFS has now been confirmed by two US studies from the FDA and NIH, both of which await publication (although some reports say this is only one study). The prevalence of XMRV in the healthy population appears to be between 3 to 7%. This does not include prevalence of the sick, disabled or dying. This virus is now associated with prostate cancer and chronic fatigue syndrome. It has been implicated in autism, atypical multiple sclerosis, fibromyalgia, myalgic encephalomyelitis, Gulf War syndrome, and possibly breast cancer. Several of these illnesses are growing in incidence, as you are aware.

    The virus does not contain an oncogene, but it is a retrovirus with a hormone response element. It inserts into the DNA and is hypothesised to confer hormone sensitivity to nearby genes. This includes oncogenes, which can then be switched on by stress or sex hormones (male and female), and so cause cancer. The neuroimmune diseases it is implicated in are all very similar, including biochemistry and symptoms. The virus appears to require an immune trigger before causing disease, and is suspected of being a risk with vaccination in those with the virus - but vaccination will probably only cause a premature trigger as these people are already at high risk. The lifespan of CFS patients might be twenty-five years less than the rest of the population.

    I was very pleased that the Australian Red Cross Blood Bank has indefinitely deferred the donation of blood from patients with CFS. However, this is only a small subset of people with the virus, many of whom are still healthy. Like with HIV, XMRV can lie dormant for years or decades before causing illness or death. Those infected but not yet sick may be capable of spreading the virus, and there is no barrier to their donating blood.

    Three antiretroviral drugs are known to treat XMRV in the lab. Off-label treatment with these drugs is anecdotally reported to be achieving good results after three months of treatment.

    Several feature documentaries are currently being made that deal with these issues.

    The time for action is here. Please let me know as soon as possible what your preliminary action is likely to be, and keep me updated with further information as you make it public.

    As this is a federal election year, this might well be an election issue if a pandemic is confirmed.

    What needs to be done:

    1. Immediate and ongoing government consultations with world experts need to commence if it hasn‘t already.

    2. Australian scientific studies on this virus need to commence, so funding needs to be made available as a national priority.

    3. Preliminary steps need to be undertaken to commence antiretroviral trials in Australia, prior to coverage under the PBS. Coverage should include not only XMRV treatment protocols, but blood tests under Medicare. This is particularly important to those already disabled by this virus as most will struggle to afford testing or treatment.

    4. Blood banks need to be screened for XMRV contamination prior to the development of XMRV neutralizing methodologies. Stored blood samples might be tested so we have an idea of who this virus has already been transmitted to though the blood banks.

    5. Free or subsidized testing needs to be offered to the entire public to allow us to identify who has the virus so that public health education can be effective.

    6. A public health education campaign needs to commence to prevent undue panic. This virus is probably treatable, but not curable.

    6. Work needs to commence on a vaccine against this virus. It is very important to get the science right as vaccination with an ineffective vaccine can trigger the virus. This virus is simple with a slow mutation rate, so developing a vaccine should be very easy in comparison with influenza or HIV.

    Thank you for your urgent attention to this matter.



    Bye

    Alex Young

    B.Sc. (biochemistry), B.Inf.
  10. alex3619

    alex3619 Senior Member

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    appendix 1

    Appendix 1: Two prior emails on this topic



    ----- Original Message -----

    From: Alex Young

    To: nicola.roxon.mp@aph.gov.au

    Sent: Wednesday, October 14, 2009 8:10 AM

    Subject: Good news for health, but planning required

     

    The Hon Nicola Roxon MP


    You may be aware that the probable cause of ME and CFS, and possibly fibromyalgia and atypical multiple sclerosis, has been identified: the retrovirus XMRV. The proposed new name for these disorders is XAND: X Associated Neuro-immune Disease. A test is currently aviailable, although a better test will be available within six months. I would like to suggest that the government begin preparation to facilitate this test being subsidised under the PBS, especially for the disabled.


    The government might also like to consider commencing planning for the tens of thousands of patients with this condition who are currently disabled, as a treatment or cure might be available within twelve months. It is too early to give a precise timeframe, but it isn't too early to do some simple preliminary planning.


    Consideration should also be given to implementing routine screening of blood donations for XMRV, as it has been in the population for decades and can be transmitted by blood. Preliminary data gives a population incidence of this disabling and fatal virus at just under four percent. It is also known to cause cancer.


    Prompt attention to this matter could save Australia billions of dollars a year and benefit hundreds of thousands of Australians and their families. I am one of them.


    I can supply links and references if you require them, but so much information has become available since the publication of the paper in Science on October 8 that a simple search will overload you with information. The website for the research institute is:


    http://www.wpinstitute.org/xmrv/index.html

    Please be aware that the details found in the press are significantly out of date, and even more neuroimmune disorders are under investigation for the involvement of this virus.


    Thank you for your time and attention.


    Alex Young (Disabled long-term CFS patient)

    B.Inf. (1st.Hons), B.Sc. (Biochemistry)

     

    (Please note that the Wall Street Journal link has been updated to work correctly as of today's date.)

    ----- Original Message -----

    From: Alex Young

    To: nicola.roxon.mp@aph.gov.au

    Sent: Wednesday, April 07, 2010 8:46 PM

    Subject: Wall Street Journal Blood Supply Risk, Planning required

     

    The Hon Nicola Roxon MP, Minister for Health and Ageing,


    The following link is to an article in the Wall Street Journal, regarding the risk to public health of the virus XMRV:

    http://online.wsj.com/article/SB10001424052702303450704575160081295988608.html

    Planning should have already commenced to deal with this potential pandemic. This virus may yet turn out to be innocuous, but over six percent of the world's population might be affected, based on realistic estimates. This is calculated from combining the percentages of healthy people who are infected, with percentages from those illnesses that are suspected to be caused by it. The 6% figure could rise to 10% if certain worst case assumptions are real, but this is unlikely. However, if over two million Australians turn out to be infected with a potentially lethal retrovirus, you can expect serious repercussions to Australia. Planning must commence now, if it hasn't started already.


    The best case scenario is, of course, that this virus turns out to be an innocuous "passenger" virus, in which case only the cost of preliminary planning will be wasted. I, and many others, are not yet advocating urgent action, as the science isn't there yet. The need for urgent action may yet arise before the end of the year, so your office should be tracking public announcements from the USA regarding this virus.


    As for treatment, a number of antiretrovirals have some efficacy in the lab, although human trials have not commenced. If the risks are confirmed by further research, then between 340,000 (using Japanese prevalence data) to two million Australians will require urgent antiretrovirals at considerable cost, as many of these people are disabled and could not afford commercial purchase of these drugs at current rates. Of course, only mass screening will enable all these people to be identified, so that has to be planned for as well. As the potential cost to Australia for drug subsidy could easily be in excess of twenty billion dollars a year, urgent attention to this problem is required.


    The good news is that with this treatment several hundred thousand disabled Australians may be able to reenter the workforce.


    Thank you for your attention,

    Alex Young,

    B.Sc., B.Inf.
  11. alex3619

    alex3619 Senior Member

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    appendix 2

    Appendix 2: List of Ministers and Other Officials or Media Contacts Emailed



    Federal

    The Hon. Nicola Roxon MP, Minister for Health and Ageing: nicola.roxon.mp@aph.gov.au

    Hon. Peter Dutton, MP, Shadow Minister for Health and Ageing: Peter.Dutton.MP@aph.gov.au



    Queensland

    The Hon Paul Lucas MP, Deputy Premier and Minister for Health: deputypremier@ministerial.qld.gov.au

    Mr. Mark McArdle, Shadow Minister for Health: caloundra@parliament.qld.gov.au



    New South Wales

    The Hon. Carmel Tebbutt BEc, MP, Deputy Premier, Minister for Health: dp.office@tebbutt.minister.nsw.gov.au

    The Hon. Barbara Perry MP, BA LLB, Minister Assisting the Minister for Health (Mental Health): office@perry.minister.nsw.gov.au

    The Hon. Peter Primrose MLC B, Minister for Disability Services: office@primrose.minister.nsw.gov.au

    The Hon. Frank Sartor MP, Minister Assisting the Minister for Health (Cancer): office@sartor.minister.nsw.gov.au

    Mrs. Jillian Skinner MP, Shadow Minister for Health: northshore@parliament.nsw.gov.au



    ACT

    Ms. Katy Gallagher MLA, Deputy Chief Minister and Minister for Health: gallagher@act.gov.au

    Mrs. Jacqui Burke, Shadow Minister for Health: burke@parliament.act.gov.au



    Victoria

    The Hon. Daniel Andrews MP, Minister for Health: daniel.Andrews@parliament.vic.gov.au

    Mr. David Davis MLC, Shadow Minister for Health: david.davis@parliament.vic.gov.au



    Tasmania

    The Hon. Michelle O’Byrne MP, Minister for Health: michelle.obyrne@parliament.tas.gov.au

    Mr. Jeremy Rockliff MP, Shadow Minister for Health: jeremy.rockliff@parliament.tas.gov.au

    Mr. Paul O’Halloran MP, Shadow Minister for Health: greens@parliament.tas.gov.au

     

    South Australia

    The Hon. John Hill BA, DipEd, LLB, JP, Minister for Health: minister.health@health.sa.gov.au

    Dr. Duncan McFetridge MP, Shadow Minister for Health: morphett@parliament.sa.gov.au



    Western Australia

    The Hon. Dr. Kim Hames MLA, MB, BS, JP, Minister for Health: kim.hames@mp.wa.gov.au

    Mr. Roger Cook MLA, BA, GradDipBus (PR): kwinana@mp.wa.gov.au



    Northern Territory

    The Hon. Konstantine Vatskalis MLA: minister.vatskalis@nt.gov.au

    Mr. Matthew Conlan, Shadow Minister for Health: matt.conlan@nt.gov.au



    Media Outlets

    Sixty Minutes: 60minutesmail@nine.com.au

    Other media outlets will be emailed separately due to anti-spam filters, including the ABC's Four Corners and Catalyst.



    Patient Forums

    These sites are being separately advised due to submission requirements: Phoenix Rising and Co-cure.
  12. alex3619

    alex3619 Senior Member

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    Hi

    For an update: two emails bounced and I will have to do something about it, even if it means phoning interstate. At least one media outlet has acknowledged my email, and one health minister, to date. Given that their offices only opened a few hours ago, much can yet happen.

    Bye
    Alex
  13. I liked the final draft a lot, top work Alex.


    I think along with the media, sending this info to info@getup.org.au would be a good idea, especially if the science comes in before the election & the major parties ignore it - also send it to some contact point at the federal greens, they are tipped to pick up more senate spots & hold the balance of power there after the election.
  14. alex3619

    alex3619 Senior Member

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    Hi Ash,

    I'll look at this tomorrow, as I am still suffering payback from an intense weekend - feel free to PM me to remind me if I don't mention it in a day or two. On a good note, a shadow minister has now expressed interest - but I think I will keep all replies confidential for now, especially positive ones, and always if they ask for confidentialty. We need allies and alienating them would be a bad move. If this becomes something that is discussed in parliaments around Australia then when some of the research we are expecting finally gets published they will have a head start on coming to terms with it. Its still early days though, and while this minister said they'ld look into it, it doesn't mean they will agree iwth anything or do anything. This is about raising awareness at the polical level. For those of you reading this outside Australia, don't ignore politicians just because they are not in the current goverment.

    One of the shadow ministers I emailed was a green. If you would like to suggest good candidates, or would like to pass this on yourself, feel free to do so. I wanted the letter public for a reason, and I have no problem with anyone using it to further our cause. We just need to keep a list of every candidate who was sent a letter so that we dont spam them due to over-enthusiasm.

    bye
    Alex
  15. alex3619

    alex3619 Senior Member

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    Hi

    Someone else has supported my request by emailing every minister. If you are Australian and concerned, please email a short note to them to comment - or write your own letter even if you have a different viewpoint. They need to know people are interested (we probably shouldn't presume they are aware of how important this is for us). The addresses for the NT minister and the ACT shadow minister are wrong I think, I will be checking this shortly.

    Bye
    Alex
  16. alex3619

    alex3619 Senior Member

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    Hi, I found out why emails to Jacqui Burke failed, she is no longer in office. I have another email from a homepage for the NT health minister, I am retrying now. Bye, Alex
  17. alex3619

    alex3619 Senior Member

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    9,744
    Logan, Queensland, Australia
  18. alex3619

    alex3619 Senior Member

    Messages:
    6,650
    Likes:
    9,744
    Logan, Queensland, Australia
    Hi, at least one politician who is not a minister is now looking into this. I have received advice that a hard copy letter is better as ministers receives so many emails that most are overlooked. I do not have a working printer and can't get out much to post mail anyway, but anyone who can might like to think about this. Bye, Alex
  19. alex3619

    alex3619 Senior Member

    Messages:
    6,650
    Likes:
    9,744
    Logan, Queensland, Australia
    Hi More responses are coming in. I do not intend to list them or this thread will be a series of short comments on replies. Bye, Alex
  20. alex3619

    alex3619 Senior Member

    Messages:
    6,650
    Likes:
    9,744
    Logan, Queensland, Australia
    Hi,

    I just received a hardcopy letter from Katy Gallagner, MLA, the only one who has sent me a physical reply. She notes how widely I have distributed the email, and says "You concerns have been noted and I will ensure the appropriate officers within my Department are advised of your concerns".

    Emailing to many people at the same time can get noticed.

    Bye
    Alex

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