Should I worry about the blood that saved my daughter?

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Old 08-17-2004, 06:45 PM
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Should I worry about the blood that saved my daughter?

From the Globe and Mail - http://www.theglobeandmail.com/servl...OD17/TPHealth/




Should I worry about the blood that saved my daughter?

When news came this month that a second person had become infected with variant Creutzfeldt-Jakob disease from a transfusion, memories of a frightening phone call came rushing back for The Globe's ALANNA MITCHELL




I still remember the day I got that phone call: Friday, May 3, 1996, at about noon. My daughter, the hellishly cheery voice told me, was one of several thousand Canadians who had received a blood transfusion containing some blood products from donors who developed the fatal Creutzfeldt-Jakob disease, the human form of mad-cow disease.

I put my head in my arms and cried so hard that colleagues came into my office to see what was wrong. My daughter, then 5, had been fully transfused at birth, a measure that saved her life. We'd dodged all sorts of health bullets since then, and thought it was all behind us. And now this.

But what was this? What were the implications of the fact that she had received blood from someone who then died from CJD?

The cheery voice couldn't tell me. And when I investigated, I found that nobody else could, either. At the time, doctors did not know whether CJD could be transmitted by blood transfusion.

They only knew that there had not been a documented case of transmission by transfusion so far. They said it was theoretically possible. I remembered when they used to say that about HIV, too, and it was cold comfort.

But it has been more than eight years since that phone call, and my family had moved on. Until earlier this month, that is, when a snippet from the respected medical journal The Lancet caught my eye. It told of a second person who had been infected by blood transfusion with the British-born form of CJD, which is known as variant or vCJD. In 1996, the first case of vCJD emerged in Britain. It was linked to the consumption of beef from a cow infected with mad-cow disease.

Clearly, it was time to ask more questions.

Kumanan Wilson, an assistant professor in the University of Toronto's department of medicine, has been one of the foremost researchers on transfusions and CJD in Canada since the issue first hit the public radar 10 years ago. He took time out from his holidays to provide some answers.

The nub of it is that vCJD is quite a different beast from classic CJD and is transmissible by transfusion, but it turns out that classic CJD probably is not. Because of research done in the intervening years, fears about whether classic CJD can be spread through the blood supply are far less today than they were 10 years ago.

Back in 1994 and 1995, fears about the safety of the blood supply ran deep and wide. Canada's Krever inquiry into the HIV-tainted-blood scandal was in full swing; one hematologist who testified at the inquiry said he believed that CJD could be the next big threat to the blood supply.

At the time, the American Red Cross had already recalled blood products from donors who later developed CJD. In 1995, the Canadian Red Cross followed suit, informing about 900 hospitals that they had blood supplies from a donor who went on to develop CJD. Each hospital then had to decide whether to inform patients who had received the blood. A few did, including my daughter's hospital; many did not.

Later that year, Health Canada declared that it would no longer accept blood donations from people known to be at risk of developing CJD.

At the same time, five studies were launched around the world to see what happened to people who had received the CJD-donor blood, and to check out the blood-transfusion history of people who died from CJD.

When vCJD hit Britain in 1996, doctors were immediately worried about the blood supply. They reasoned that if people could get vCJD from eating meat, it was likely they could get it from blood, said Dr. Wilson.

Classic CJD affects only neurological tissue and can be transmitted by transplants of infected neurological tissue. But the new type, vCJD, also attacks lymph tissue, which is intimately connected with the body's blood supply. And in vCJD, the concentrations of prions, the malformed proteins that cause the infection, are far higher than in classic CJD.

Meanwhile, the results of some of the "look-back" studies on the transfusion history of people who developed classic CJD were coming in. The logic behind the studies was that because blood transfusions have been common for 60 years, looking back at transfusions given to people who later died from classic CJD might hint at whether blood was involved in the deaths.

The studies found that people who died from classic CJD had not received more transfusions than other people. As well, the rate of classic CJD in the population has remained stable over 60 years, even as transfusion has grown more common.

For classic CJD, it all added up to what doctors now consider a closed case, said Dr. Wilson. As an extreme precaution, though, Canadian Blood Services does not accept blood from people who have classic CJD in their family. (People like my daughter, however, are as free to donate blood as anybody else.)

And if the blood-services agency finds out that a donor went on to develop classic CJD, it tracks down the blood and withdraws whatever is left in the system. Again, this is just to be on the safe side, given the mounting evidence that classic CJD cannot be transmitted through blood, noted Lesly Bauer, manager of strategic communications for Canadian Blood Services in Ottawa.

However, because of the growing evidence that vCJD can be transmitted through the blood supply, the focus instead is on making sure that donors are barred from giving blood if they have lived in the United Kingdom and several other parts of Europe where tainted beef was consumed.

And as for my daughter? She's so busy living life to the fullest that she rarely gives a thought to her blood. Now 14, she's happy, healthy and preparing for high school in the fall.

Guarding our blood

To protect against possible transmission of variant Creutzfeldt-Jakob disease (vCJD) in the Canadian blood supply, you cannot donate blood or plasma:if you have spent a total of three months or more since 1980 in the United Kingdom (England, Scotland, Wales, Northern Ireland, the Isle of Man and the Channel Islands) or France;if you have spent a total of five years or more since 1980 in Belgium, Germany, the Republic of Ireland, Liechtenstein, Luxembourg, Italy, the Netherlands, Portugal, Spain, Switzerland, Austria and Denmark;if you have had a blood transfusion or have had medical treatment with a product made from blood in the U.K. since 1980;if a blood relative (parent, child, sibling) has developed Creutzfeldt-Jakob disease.

Source: Canadian Blood Services website
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