In September 2010 the above paper was published in the Medical Journal of Australia(MJA).
The paper was originally submitted for publication in September 2009 which was unfortunate timing for us as it coincided with the review of the PHTA account. Although publication was delayed until September 2010 a draft copy was supplied to Professor Magnusson during his review of the trust account and the network. However, as the article was embargoed we were denied any knowledge of the content and only knew that it contained risk statistics.
The paper offers good news in that our risks are diminishing with time but risk estimates and percentage do not provide more confidence for recipients than is currently already growing and we believe that the paper could have had an adverse influence on the reviewer’s recommendation when it came to the continuation of the trust account and support for recipients. We strongly believe that until we can be given a guarantee that no more recipients will develop CJD as a result of the Australian Hormone Pituitary Hormone Program (AHPHP) and until we no longer experience difficulties when accessing health care, then support and assistance for our cohort needs to be maintained.
Furthermore, the Executive Committee of the CJDSGN, recipients ourselves, had concerns about the accuracy of some of the background history provided in the paper and although we welcomed the fact that the Australian recipient community is considered to be at a very low risk of developing iatrogenic CJD, and acknowledge that the paper refers to a possible single discrete contamination event, we do challenge the fact that information available does not clearly identify higher-risks periods. For those of us informed that we had received a contaminated batch, a batch common with two of the cases and the only batch received by one of the women, this came as a second and even more devastating blow in 1992 when the DoHA encouraged our treating doctors to recontact those of us involved to communicate this additional news. It was also our opinion that the paper in no way acknowledged the enormous impact of the notification on our lives and the lives of our families and we felt compelled to set the record straight. Although we acknowledge that the paper was published to review risk percentages this data does not bring back those who have died, take away the guilt of the parents who consented to hGH therapy for their children, or change the devastation and heartache for so many. What happened to us cannot be forgotten and we need to assure that something as devastating as this never happens again.
We consulted with Associate Professor Steven Collins, our medical director and co-author of the paper and on his advice David Ralston and I submitted a letter to the editor in response to the paper. It was published in the Medical Journal of Australia in February 2011. Our intention was to set the record straight and correct, what we considered, were some inaccuracies. This paper does however offer some good news which came about when the MJA inquired during the publication process what the purpose of the paper was. Recommendations on changes to the infection control guidelines were subsequently included and this certainly may provide, with time and education, an end to discrimination and delays for recipients of human growth hormone (hGH), treated for short stature, and recipients of human pituitary hormone gonadotrophin (hPG) as a fertility treatment.
Download ‘Iatrogenic Creutzfeldt-Jakob disease in Australia
Download ‘Letter to Editor and response- published Medical Journal of Australia – February 2011