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The Nasty Side of Organ Transplanting.

Chapter 21

The Politics of Suppressed Death Statistics

Australia

The Australians began hiding patient survival statistics just before the end of the last century. They had been published in the Australian and New Zealand Organ Donor Registry Annual Report (ANZOD) then excluded.^[137] Why would they remove such crucial data?

I asked this of then co-editor of the Annual Report, Karen Herbertt, in 2001 and she said they were short staffed and couldn't compile the data, an apparently reasonable response considering stagnant hospital budgets. Yet this was contradicted by the inclusion of complex data in her ANZOD 2000 Annual Report, data costing far more to collect than basic survival rates.^[138]

This data included ages of donors and recipients, gender, occupation, ethnic origin, religion. It included virology screening, cardiopulmonary resuscitation rates, smoking and drinking status, refusal or consent of donor families, weight and health of donors. Also, the age of unsuitable donor kidneys, terminal serum creatinine and urea levels in donated kidneys plus the oliguria and hypotension effect on kidney graft survival plus pages of similar data for other organs. It included 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 donor’s life.

The ANZOD editors included tables listing drugs used to maintain harvest organs and hospital origin of donors. It included reasons for donor deaths: 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, swallowed an apple and strychnine poisoning.

It’s fascinating reading but fails to provide an overview of transplant effectiveness. Simple survival data would show whether life expectancies of organ recipients are increasing, how Australia compares with other countries and whether previous figures were falsified.

Why Hide High Survival Rates?

Why would they decide in 1997 to stop publishing survival rates in the ANZOD Annual Reports? A cynic might suggest that reliable statistics give critics more ammunition for asking questions. For example: Are deaths counted only if they're reported to the transplant organisations? What about deaths from other causes? What is the standard statistic error estimate? What was the survival rate of those who missed out on a life-saving transplant? One would expect these issues to be easily, if not eagerly clarified.

I contacted the ANZDATA Registry in Adelaide. They publish the ANZOD Annual Report. Professor Graeme R Russ was then co-editor with Karen Herbertt. He made vague noises pretending he didn't understand what constituted survival statistics. He said ANZDATA were too busy and my request would go on the slow queue and cost a hundred dollars to print two pieces of paper. Even that didn't happen. This was back in 2001. I approached ANZDATA again in 2006. They were better this time. Lee Excell provided some data and other people to contact though she wasn't wild about sharing data, either.

Matthew Hee, at the government funded “Australians Donate” organisation, copied Russ’s vague mumbling then added high-pitched giggling sounds. He passed the buck to colleague Bruce Lindsay who was never available due to attending to personal needs or in a meeting. Other Australian donation agencies responded similarly – high pitched giggling from men; hostility and aggression from women.

Karen Herbertt has left the South Australian Organ Donation Agency. You don't know how good someone is until they're gone. The Agency has since left its shopfront office in Adelaide’s hospital/university precinct. They've retreated to the business section where the receptionist hides behind slits of protective glass.

The Mythical 90% One-Year Survival Rate

Australian organ donor agencies use promoters to give lectures in schools. They avoid quoting precise data claiming instead a 90% one-year survival outcome for vital organs. They call this their “ballpark figure”. 90% is accurate for kidney transplants but this claimed 90% one-year survival rate for other vital organs such as pancreas' and hearts appears deception.

Australian 1997 heart transplant survival statistics were published by the government agency, ACCORD, (since replaced by the mysterious Australians Donate). ACCORD claimed an impressive one-year 90% survival rate for heart transplant recipients.

Incredibly, the German one-year survival rates listed in Mario Deng’s study, Effect of receiving a heart transplant: analysis of a national cohort entered on to a waiting list, stratified by heart failure severity were 71% for the years 1997-2000. The Henry Mondor Hospital in Paris with its large and experienced cardiac transplant unit was even lower at 62%.^[139]

Deng’s conclusions were corroborated in the United Kingdom by the Clinical Effectiveness Unit of The Royal College of Surgeons of England. They 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% [of these] had died,…” while the three-year survival of those not getting a transplant was: “…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.”^[140]

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 claimed 1997 Australian 90% one-year survival rates indicate? The answer is simple: the government agency, ACCORD, was lying. So were the organ donation agencies quoting this figure in schools.

But things haven't changed and government funded registries obfuscate the simplest survival data. The Australia and New Zealand Cardiothoracic Organ Transplant Registry (ANZCOTR) doesn't print stand-alone one-year survival rates in its 2005 Report. They mix one-year results with the previous twenty years then average them out at 83.9% leaving us none the wiser as to the most recent one-year survival rate.^[141]I asked Ross Pettersson at ANZCOTR for the latest one-year data but he said was too busy to provide them.

The politics of heart transplanting

Mario Deng’s team concluded that only patients with a high risk of dying while on the waiting list improved their life expectancy with a transplant. Those with medium and low risk of dying while on the waiting list didn't improve their life expectancies with a heart transplant. So why bother giving them new hearts?

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 due to their general bad health when compared to those of medium and low risk who, perhaps, got heart transplants that weren't necessary. This would reduce the average life expectancy of heart transplant recipients to such low levels that the public might question why we as a society bother with the procedure.

To dissuade the public from asking this question scarce hearts are transplanted into less desperate patients 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.^[142]

This begs the question that waiting lists might be padded with people who could benefit more from other forms of medical treatment.