main letter
----- Original Message -----
From: Alex Young
To:
nicola.roxon.mp@aph.gov.au
Cc:
Peter.Dutton.MP@aph.gov.au ;
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daniel.Andrews@parliament.vic.gov.au ;
david.davis@parliament.vic.gov.au ;
michelle.obyrne@parliament.tas.gov.au ;
jeremy.rockliff@parliament.tas.gov.au ;
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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.
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.