When life becomes a game of chance

Doctors know that a completely safe blood supply is a fantasy.But some, like those who get bad transfusions, discover this the hard way. KAREN KISSANE reports.

DOCTORS have a name for illnesses caused by medical treatment: they call them “iatrogenic”, from the Greek for “beginning with the physician”. Tracey McCullagh, lying in hospital after the birth of her second child in 1990, didn’t know that word. But she knew the concept.

When a doctor armed with a consent form raced in to tell her that her day-old son needed a blood transfusion, she looked back at him questioningly. Was the blood safe? “He said, `Don’t worry. It’s been checked’.”
McCullagh, already frantic with anxiety over the child she had been allowed to hold only once, the child born orange with jaundice because his blood was not compatible with hers, the child now at risk of permanent brain damage, signed the form.

They nearly lost Corey several times in the next few days but he recovered. As a toddler he was a bit sickly – on antibiotics every month for minor infections – but McCullagh thought nothing of that. And when he cut himself she thought nothing of sucking the blood from the wound. “We didn’t know,” she says helplessly.

He was two-and-a-half before she was told that the blood that had given Corey life could have given him a chronic and potentially lethal disease, hepatitis C, and that his blood could infect others.

Bad blood. It wasn’t supposed to happen again, McCullagh had thought; things had tightened up since the AIDS tragedies of the ’80s and the blood supply was safe, wasn’t it? It certainly seems safe from HIV; there has been no recorded case of an Australian blood recipient catching that virus for 10 years.

But medical authorities estimate that up to 30,000 of the 130,000 Australians who have hepatitis C (HCV) allegedly caught it from blood transfusions or other blood products. According to the Haemophilia Foundation of Australia, 90 per cent of adult haemophiliacs have hepatitis C, allegedly caught from contaminated clotting agents used before HCV testing of blood donors began in 1990. People with haemophilia need clotting agents made from concentrates of donated blood to stop them bleeding uncontrollably.

The question of whether anyone is to blame for the spread of post-transfusion HCV will come before the courts next year in the first of dozens of legal suits against the Australian Red Cross. Corey McCullagh is among those seeking compensation, although he doesn’t know it yet. He doesn’t even know about his illness: “How do you tell a five-year-old?” his mother asks.

For people with haemophilia, who have seen 245 members of their community catch HIV from blood products, the hepatitis C epidemic confirms that they are the canaries in the mineshaft; problems in the blood supply that could endanger everybody hit them first and hardest. They, along with medical authorities, readily acknowledge what the rest of us have yet to understand: that the blood supply will never be completely safe, and that it was a fantasy to have imagined it ever could be.

The use of blood donations is only one concern. In this age of chronic blood-borne infections, everyone – doctors, dentists, athletes and people wielding home first-aid kits – must re-think how they deal with the blood of others.

Hepatitis is inflammation of the liver, and the different hepatitis viruses have little in common other than their result, which is liver damage. The most serious cases end in liver failure or cancer. Hepatitis C is often a silent infection and most carriers don’t know they have it, which explains how they could have continued to donate blood in the days before the blood bank was able to test for the virus.

The story of hepatitis C and the blood supply is confirmation that the blood banke nightmare – the undetectable spread of a serious illness through donations – remains all too possible.

The hepatitis C bug has been with us for millennia but it was not until it was cloned that a test could be developed to detect its presence in blood. Normally, no one could be accused of negligence for not screening for a virus before a specific test became available for it. With hepatitis C, the issue is not so clear. The law firm Slater and Gordon is acting for more than 300 potential litigants and has filed suits against the Australian Red Cross on behalf of 20 in Victoria and another 20 in New South Wales. Many of the cases involve women who received transfusions when they haemorrhaged after childbirth. Cases are also proceeding with other law firms.

A Slater and Gordon partner, Andrew Grech, says it is alleged that Australian blood banks were negligent for not introducing indirect or “surrogate” testing for hepatitis C before the specific test became available. Surrogate tests of donors’ blood looked for irregularities in liver enzymes, which it was thought might be linked to hepatitis viruses.

“In the United States, some blood banks had implemented surrogate testing in 1982,” Grech says. “Australia introduced the first generation of hepatitis C tests in February 1990.

We allege that surrogate testing here could have prevented well over half of the infections among recipients of blood in the 1980s.”
The chairman of the national blood transfusion committee, Dr Richard Kimber, declined on legal advice to comment on how Australian authorities came to their decisions. He said: “I firmly believe that what the Australian system did . .

. (was) totally correct at the time.”
Dr Katrina Watson, head of the liver clinic at St Vincent’s Hospital, was not privy to their discussions. But she points out that: “At the time that surrogate testing was being done in some parts of the world and not in others, it wasn’t clear whether surrogate testing was offering an advantage. People didn’t really know whether it was detecting a virus or whether it was just detecting the fact that those people had a slightly different liver function profile. The studies that have confirmed the value of doing surrogate testing have been done in retrospect.

” Overseas, some blood bankers have said that they did not use surrogate testing partly because it had a high rate of “false positives”; many people would have been eliminated from donating who did not have hepatitis, which might have caused blood

In public health, decisions like this must often be made by weighing up conflicting interests rather than on the basis of clear right and wrong. This is the case even now with screening blood donations for hepatitis C. Dr Nick Crofts, the head of epidemiology and social research at the Macfarlane Burnet Centre, says: “You have got a window period for hepatitis C, when the virus can be transmitted despite the blood being screened.

“There is a test, PCR, that can detect a proportion of those cases, which looks for the viral genome rather than the antibody. Why aren’t we doing that? Because it’s $60 a throw, because it takes a couple of days, because it would just make the blood transfusion system unworkably expensive.

” There are alternatives to donated blood but Australian authorities have been criticised for being slow to respond to the need for them. “Autologous” donation allows elective surgery patients to donate their own blood, either ahead of time or in theatre just before an operation. And there are machines that can recycle a patient’s own blood during surgery. But neither practice is common in Australia.

“In America, nearly one million people donated units of their own blood last year, and in Europe, countries like Germany use blood salvaging far more than we do,” says Dr Richard Davis, a South Australian anaesthetist who has been lobbying for such
measures for years.

He says that, from senior doctors down, Australians have relied on the Red Cross for so long that there is a reluctance to change. “Red Cross donors are decreasing and for the first time ever, serious blood shortages are occurring.”
In some countries, being offered the chance to donate one’s own blood for elective surgery is becoming the new “reasonable standard of care”, with some American states making it a legal requirement, says Dr Katherine McGrath, associate professor of
pathology at the University of Newcastle and former director of haematology at the Royal Melbourne Hospital.

McGrath argues that authorities must decide what kinds of surgery merit autologous donation – at present it is available ad hoc, and is easier to get if you live near a big hospital or have private health insurance. He says it would cost less if it did not have to have the same stringent testing as donated blood. After all, it is destined only for the same veins from which it came.

Peter moves stiffly, a legacy of the bleeds that have broken down his joints. His already limited life – no action sports, hours each month spent in home treatment of bleeds – contracted further when he felt the first symptoms of HCV a decade ago.

“I spent my weekends in bed, recharging my batteries, so that I could go in to work on Monday; on weeknights I was in bed by half-past seven and I couldn’t understand why.”
HE can rarely plan to go out socially because he never knows when he will have a good or a bad day. Liver tests show he has serious damage but he must live with the uncertainty of not knowing how bad the illness will get; doctors cannot predict which cases will develop into liver failure or cancer.

While haemophiliacs have suffered most from contaminated blood products, they will also be among the first to benefit from its new man-made alternatives. Science is a long way from being able to create artificial whole blood, a complex fluid with many cells that perform different functions, but there is now a genetically engineered form of the clotting agent Factor 8.

And, in America, companies are testing on humans a synthetic plasma volume expander that also contains haemoglobin, the protein that carries oxygen around the body, says Dr Peter Schiff, the clinical services manager of the bioplasma division at CSL,
the former Commonwealth Serum Laboratories. (Plasma is the straw-colored liquid that holds the blood cells).

“There are two approaches,” Dr Schiff says. “Some companies are just using ordinary red blood cells taken from blood that has been collected, and they can be stored for four or five weeks. After that the plasma is still useful, but the red cells can’t function any more as red cells, and the haemoglobin is extracted from them. Other companies are inserting the haemoglobin gene into cells that can be grown in the laboratory.

” Artificial products can be sterilised but Schiff is reluctant to pronounce them completely safe. He predicts that they will be increasingly used but that human blood will still be needed for at least the next 20 years. But, even in a brave new world with synthetic alternatives to all blood products, the risk of catching viruses through everyday contact will remain.

As more is learnt about how this can happen, doctors and dentists have revolutionised the way they work to try to limit exposure to nicks. Hospitals are increasingly challenged about the way they save money by re-using “single-use” equipment, which might increase the risk of patient-to-patient transmission of viruses. Such equipment is chemically sterilised between patients but is too fragile to survive autoclaving, the most efficient form of sterilisation.

Even sports authorities have changed their health policies, with the AFL now insisting all players be vaccinated against hepatitis B, and that injured players, whose bleeding cannot be stemmed, leave the field.

It is taking longer for the message about treating blood with caution to reach the wider public. A disturbing 25 per cent of people with hepatitis C cannot trace how they caught it; some might have become infected by sharing razors or toothbrushes with carriers. Body-piercing and tattooing remain popular despite their links with hepatitis. And then there are drugs: about 100,000 current and former intravenous drug users are estimated to carry the virus and up to 8000 more catch it every year. Nick Crofts sees the most urgent step in stopping the spread of disease among drug users is to legalise heroin and improving education campaigns and needle- exchange programs. Katrina Watson would like to take it a step further: “To me the single most important prevention is the education of the at-risk population, which is children.

“The kids who are at a party when someone says, `Try this’, are not going to go down to the local needle exchange for the first time and say, `I’m thinking of trying this’. They’re going to do it in the back yard at a party, in the dark. I see it as a matter of urgency to tell all kids, in all Australian schools, many times.”
The British writer Richard Titmuss described blood donation as modern society’s ultimate form of altruism – a transcendental selflessness.

It still is. Blood donations continue to keep Peter alive; for him, as with most of the people who allegedly caught hepatitis C from the blood supply, the gift of blood that infected them also helped save their lives.

Australia continues to have one of the world’s safest blood supplies, due to rigorous screening and testing of donations.

It has had no scandals such as those in Germany, France and Japan, where bureaucrats and businesspeople knowingly allowed contaminated material to reach patients, killing hundreds with HIV.

But, Dr Kimber, the chairman of the blood transfusion committee, says that any treatment carries risk and the blood supply is only as safe as modern technology can make it. It is not known what else might be out there, from an alphabet of hepatitises to other disease-bearing organisms. The Canadian Red Cross last year made the largest recall of blood products in its history after two donors were diagnosed with Creutzfeldt-Jakob Disease (CJD), which might be linked to mad cow disease.

Kimber says there is no evidence that CJD can be transmitted through blood, and that the Canadians were being excessively cautious. But it was some time after the arrival of AIDS that it was realised it could be transmitted by blood.

Either way, Peter and the other canaries in the mineshaft will continue to watch and wait for what they and the medical journals call “TNV”: The Next Virus.

First published in The Age.