The Nasty Side of Organ Transplanting
Second Edition
Norm Barber
Copyright
Chapter 17
The Politics of Suppressed
Death Statistics
Australia
Until 1997 patient and organ graft survival statistics were printed in the Australian and New Zealand Organ Donor Registry Annual Report (ANZOD).66 Then they were excluded. Just like that. Crucial, easily understood survival data was excluded. These were the basic one-year and five-year survival rates, which are key indicators of the success of transplant technology. So why would such an important yet inexpensive data list be excluded?
I asked this question to the astute and usually articulate co-editor, Karen Herbertt, and this began a series of bureaucrat responses that exemplified the illogic that pervades the transplant industry.
Karen said they were short staffed and couldn't compile the data, an apparently reasonable response considering stagnant hospital budgets. Her answer, however, appears contradicted by the inclusion in her ANZOD 2000 Annual Report of complex survival data costing many times more to collect than the excluded basic survival rates.66
This complex and esoteric data includes donor details such as age, gender, occupation, ethnic origin, religion, virology screening, cardiopulmonary resuscitation, smoking and drinking status, refusal or consent of donor families, weight, health of donors, donor age of unsuitable kidneys, terminal serum creatinine and urea levels in donated kidneys, oliguria and hypotension effect on kidney graft survival plus pages of similar data for other organs. Also included are the time periods from admission to hospital to ventilation to brain death diagnosis and to the aortic cross-clamp application on the harvest table that terminates the patient�s life.
The ANZOD editors included tables listing usage rates of specific drugs to maintain harvest organs, data showing from which hospitals the donors originated and details of their deaths. Reasons for donor deaths include epilepsy, overdoses, hanging, melanoma, timber fell on head, run over by car, cerebral haemorrhage, hit by towbar, skateboard hit by car, football injury, hangliding, meningitis, shot by nail gun, choking, smoke inhalation and strychnine poisoning.
All the above make ANZOD Annual Reports fascinating reading, but fail to provide an overview of transplant effectiveness. It contradicts Karen�s statement that costs restrict compilation and publication of basic survival statistics.
Why Hide High Survival Rates?
The question kept arising in my mind. Why did they decide in 1997 to stop publishing survival rates in the ANZOD Annual Reports? A cynic could say that the more factual material people have about transplanting the more incisive the questions they can ask including the claimed 90% twelve month survival rate. One could also ask how the survival statistics are compiled. Are only reported deaths of transplant recipients used to determine who died? How do patients who tire of the anti-rejection drugs, and subsequently die, get recorded? Are normal death rates included? What is their standard statistic error estimate? And the big question � Why were the Australian survival rates so much higher than French, British and American rates and why was such a success suppressed? One would expect these issues could easily be clarified. Karen Herbertt suggested I contact the transplant hospitals myself.
I Smelt A Rat
So I phoned eight transplant hospitals around Australia and discovered that even receptionists could reel off the survival rates for organs their hospital transplanted. The only problem was when managers or senior doctors discovered my questioning and then stopped any further communication. They wanted to know my credentials and what exactly would I be writing and even then refused to supply percentages. It wasn�t enough to be a member of the public wanting to know simple transplant survival statistics at a public hospital.
I phoned Karen again saying how easy statistics were to be collected if hospitals were willing to supply them. Much easier than compiling detailed statistics on the complex disease and other characteristics of donated organs that were listed in the ANZOD Annual Report.
She suggested I call Graham Russ of the ANZDATA Registry, another survival data collection agency, which publishes the ANZOD Annual Report. Graham Russ and Karen Herbertt, as well as having other jobs, are the co-editors of the ANZOD Report. Graham wasn�t as fresh and clear as Karen and began made vague noises indicating he didn't understand what basic survival statistics were. He said ANZDATA, or whoever he was speaking for at that moment, were too busy and my request would go on the slow queue and cost a hundred dollars to print two pieces of paper. And he never even did that.
Matthew Hee, at the �Australians Donate� organisation, copied Graham�s vague mumbling and, along with verbal responses, added high-pitched giggling sounds. Matthew said Bruce Lindsay was the person to speak to but, Bruce was never there and was either attending to personal needs, in a meeting or visiting a doctor. Other Australian donation agencies responded similarly � men mumbling and giggling and women becoming hostile and aggressive. The men must follow the same training manual.
Karen Herbertt was unusual. She generally responded to questions as if under an obligation to inform the public. The others acted as if briefed to deceive and confuse.
The Mythical 90% One-Year Survival Rate
During Australian school lectures transplant coordinators pretend to be unsure of exact survival data and will say 90% is the one-year survival outcome for vital organs. They call this their �ballpark figure�. Ninety per cent survival may be true for kidney transplants, which aren�t necessarily life saving procedures anyway, and for which the patients� survival rates may even be higher if they miss the transplant and stay on dialysis. The claimed 90% one-year survival rate for other vital organs appears to be deception.
The last published heart transplant survival statistics for Australia for 1997 were published by the defunct, ACCORD, a government transplant promotion agency replaced by the mysterious Australians Donate. ACCORD listed heart transplants as having an impressive one-year 90% survival rate. Incredibly the German survival rates listed in Mario Deng�s study for 1997 were 71%. Even lower is the Henry Mondor Hospital in Paris with its large and experienced cardiac transplant unit having a 62% rate.67
The Clinical Effectiveness Unit of The Royal College of Surgeons of England, did a Cardiothoracic Transplant Audit for the years 1995 to 1999. The audit discovered that �Within six months of listing 52.5% of patients on the heart transplant list had been transplanted and 11.0% had died,�� while survival of those not getting a transplant was �After three years, the waiting list mortality was 16.9%�� The study concluded that
�Thoracic transplantation is still limited by donor scarcity and high mortality. Overoptimistic reports may reflect publication bias and are not supported by data from this national cohort.�67a
Even the Registry of the International Society for Heart and Lung Transplantation report a one-year survival of 78% in 1999. So what do the much higher Australian survival rates indicate?
Anne Keogh from St Vincent�s Hospital in Sydney, Australians Donate and the International Society for Heart and Lung Transplantation told me in an email that we shouldn�t be surprised by Australia�s higher survival rates implying this is due to superior post-transplant aftercare treatment. Australia doesn�t import human heart valves or cardiac tissue from United States and Europe because their disease-free and personal history standards are lower than in Australia suggesting the Europeans and Americans are killing patients by transplanting infected organs and materials into them.
This is a comforting thought but the Australian transplant industry now hides both its survival figures and collection methodology indicating something is amiss. Nor does the contemptuous reaction to enquiries instil confidence.
If Australia has such high standards of disease control and post transplant care then why is the industry unable to fund the collection and publication of simple survival statistics? They spend millions on glossy pamphlet and television promotion. Even a fool would suspect a cover-up by both the government and industry.
Mario Deng�s Study Conclusions
Mario Deng�s team concluded that only patients with a high risk of dying on the waiting list improved their life expectancy with a transplant. This begs the question of why bother putting scarce transplantable hearts into people of medium and low risk of dying while on the waiting list when it doesn�t improve their life expectancy.
The answer is that if all scarce transplant hearts were allocated to the most seriously ill heart patients then more life expectancies would be increased. This isn�t done because they would still live shorter periods than those of medium and low risk who, perhaps unnecessarily, got heart transplants. This would reduce the average life expectancy of heart transplant recipients to such low levels that the public would question why we bother with the procedure.
To dissuade the public from asking this question scarce hearts are transplanted into less desperate patients and whose life expectancy, on average, won�t improve. This less desperate group has such little use for a transplanted heart that 9% of them in Deng�s German study were removed from the list because their health improved before a heart became available. 68
This could again beg the question that the waiting lists might be padded with people who could benefit more from other forms of medical treatment. If the Australian 90% figure is true then perhaps heart patients in less need get transplants while those more desperate are left out to maintain higher transplant survival rates.
|