How seriously do doctors take reaction reporting?

In the last few days, I have been accused by various ill-informed people that I am incorrect in saying that vaccine reactions are not generally reported. They insist that reaction reporting is mandatory in Australia (it's not - several states, NSW among them, have rules to require reporting of vaccine reactions but there is no enforcement) but they are not correct. There is no federal regulation forcing medical professionals to report reactions when they occur and even in states where there is a requirement, the actual rate of reactions being reported is pathetic - between 1% and 10% - and there are no penalties for not reporting.

In going through our archives (I think I may have mentioned that we have been in the process of digitising all of our records - a very, very long process even though we have a fantastic photocopier/scanner that is sheet fed and very fast) I have been rediscovering many pieces of correspondence which I will share with you as the time is available and it seems appropriate.

Since we were challenged on the statement that vaccine reactions are not reported (and the government itself admits that they are not but uses the excuse that other countries with mandatory reporting don't get more than 10% of reactions reported so we're doing well!) I thought it might be a good time to share this very sad story with you. May I point out that to the best of my knowledge, out of all the reports of serious injuries and deaths that we have submitted to the government, there have been less than 5 that have ever been followed up by ADRAC (The Adverse Drug Reactions Advisory Committee) and of those 5, none of them have been classed as causally related to the vaccine even though, like this case, many of them have a very close temporal link and the reactions are repeated following subsequent doses of vaccination.

Of course, all names have been deleted including the name of the ADRAC official.

24 January 2004

Mr. XXXXXXXXX

Adverse Drug Reactions Advisory Committee

PO Box 100

Woden ACT 2606

Dear Mr. XXXX,

I am writing to you in reference to ADRAC Report No XXXXXX dated 30/10/03.

I apologise for the delay in replying, but I have been overseas since November and have only recently returned. Can I please ask that all future correspondence regarding reactions reported by the Australian Vaccination Network be addressed to myself since I would be the person who contacts parents for further details on reactions?

In regard to this reaction, the parent’s name is XXXXXXXX and her daughter’s name is XXXXXXXXX. XXXX's telephone number is XXXXXXXXXX and she is happy to discuss her child’s reactions further with either yourself or another representative of ADRAC.

I will tell you what I know of this case and why I believe quite strongly that this child’s injury was as a direct result of the vaccinations she received.

XXXXXX was a healthy, full-term child born via induction who had no chronic or acute conditions prior to receiving her first series of vaccines (DTPa, IPV) on 28 March 2003.

A bit over 2 weeks past this vaccine, on 14 April 2003, XXXXXX began to experience seizures. On admission to hospital, there was evidence found of retinal haemmorhage and a subdural haemorrhage though there were no bruises found on her skin.

The parents questioned whether the vaccines could be responsible since the child had been screaming on and off from the time of vaccination until the time of the first seizure. She also had a persistent high cry since the time of vaccination.

The hospital staff refused to listen to anything these parents said and, upon discovering that the child’s father had been home alone with XXXXXXX at the time, the child was removed from the family, made a ward of the state and neither parent was allowed to have access. This family has two older children who had never had these sorts of problems and were apprently healthy. Despite this, the child was placed in care.

The mother pleaded with the authorities to make sure that her child would not be vaccinated again because she was convinced it was the vaccine which had led to her problems.

Her pleas fell on deaf ears and, on 27/7/03, XXXXX was again vaccinated whilst in care.

A short time later, she displayed flu-like symptoms, her seizure activity increased and she again experienced a brain haemorrhage so severe as to require brain surgery be performed.

I’m sure that you will have no trouble looking back only a few years in time to find that until very recently, vaccination was contraindicated in anyone with an unstable neurological condition.

Of course, the fact that XXXXXX displayed exactly the same (though more severe) symptoms following vaccination would indicate to anyone that the cause of the condition had been found. If only the government had listened to these parents, perhaps this child would not now be on high doses of seizure medication, with partial paralysis, vision problems and who knows what other health problems?

Even more telling is the fact that for some strange reason, all of XXXXXX's medical records seem to have gone missing. Every time this child is brought to a doctor or to the hospital, her mother is told that all previous records seem to be gone.

I hope that you do follow this case up and that it is discussed at the next meeting of ADRAC. You see, in your letter to XXXXXXX regarding this case, you wrote that, “...this report has been reviewed by the Committee and the expert opinion is that the clinical phenomena reported are extremely unlikely to have been causally related to the immunisations both because of the timing and the lack of other reports describing similar events.”

Now, that is very interesting because I would have absolutely no difficulty in showing you tens of reports just like this one following a vaccination - many of them in Australia.

In addition, I find that the blue card system is truly inadequate. I enclose a copy of the adverse reaction report form which the AVN sends out to parents wanting to report reactions. As you will see, we collect much more data than you do and therefore, we may be more likely to catch trends when they occur. Of course, these trends would be much easier if you did something simple like keeping track of lot and batch numbers associated with vaccines.

I would like to request a telephone conference with yourself and anyone else who would be involved in this process to discuss updating the blue card system so that it actually tells you more relevant information. Your prompt response to this inquiry would be very much appreciated.

I look forward to speaking with you at your earliest convenience.

Kind regards,

Meryl W. Dorey,

I do have to let you know that ADRAC never replied to my request for a conference nor did I get any more information from them as to the status of their 'investigation' into this case.

The mother involved was able to lobby her local Member of Parliament and after several months, regained custody of her child who, the last time I spoke with her (which was some time ago), evidenced signs of severe brain damage, was blind, still partially paralysed and suffered from almost constant seizures despite high levels of medication which had her in a zombie-like state.

No apology was ever forthcoming from the government department involved for not only removing this child illegally from a loving and caring family environment or for being so remiss in their duty of care as to revaccinate a child who had a serious reaction previously as well as an unstable neurological condition.

None of the doctors involved - including those in the hospital - reported either reaction to ADRAC. The AVN reported these events which was why there was any follow-up at all.

How many other children and adults are reacting to vaccines every day in Australia?

We may never know. But what I do know is that doctors are still not reporting reactions when they occur and the government does nothing to remedy this situation.

Please - if you or someone you know of has had a reaction to a vaccine - even if it was years ago - make sure it is reported. Visit our website or forward these details to someone else - www.avn.org.au and click on the link at the top of the page that says - Report a Reaction.

If you would like to have hard copies of our reaction report form - especially if you are a health practitioner and would like to keep them in your office - please send an email to janiece@avn.org.au and ask her to send them to you via return email so you can print them out or, if you don't have access to a printer, provide her with your address details and she will be happy to send you some hard copies.

You do not need to know all of the information - just fill in what you can. We will then forward that report (totally de-identified so that nobody will be able to contact you without your consent) to the government. We need better statistics on vaccine reactions and with your help, we can force the government to take this issue seriously.