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Patients kept in dark about CJD timebomb;
MP calls for those at risk of infection to be made aware

November 19, 2001 Western Daily Press by Tristan Cork
MORE than 20 people who could have the CJD timebomb in their blood have not been told, health chiefs admitted last night.

Twenty-two people were given blood contaminated with new variant Creutzfeldt Jakobs' Disease, and all but one will not be informed they could develop the human form of mad cow disease.

The Government said it would not tell the patients because the "current ethical advice"was that it would be better for them not to know. But MPs last night demanded those involved should be told amid fears they could unwittingly pass the disease on if they go on to give blood themselves.

The revelations came to light after it emerged a 12-year-old boy with haemophilia was given contaminated plasma from a donor with new variant CJD (nvCJD).

Health chiefs informed his parents, and the National Blood Service and the Department of Health found 21 other patients had given infected blood.

But the CJD Incident Panel, the Government's group of health specialists trying to manage the CJD outbreak, decided not to inform those patients known to have been exposed. A Labour MP called for that decision to be reversed. "I understand that we do not want to create a panic, but people should be told, " said Dai Havard MP.

But scientists say links between so-called mad cow disease and nvCJD have not been conclusively proved, and the health chiefs admitted they did not know whether those who received infected blood would definitely develop the disease.

"Because we don't know if they will develop the disease, the current ethical advice is that patients would not benefit from such uncertain knowledge, " said a spokesman for the Department of Health. Scientists have warned the transfer of mad cow disease into humans could be the biggest medical problem of the early 21st Century. Some predict hundreds of thousands of people could die from the disease, because the incubation period is thought to be as long as 20 years. The disease is incurable, and seems to affect mainly young adults who die a slow and agonising death.

Some scientists are warning nvCJD is a ticking timebomb in the population, although new cases of the disease remain steady at around 20 a year.

So far 111 people have been definitely diagnosed with the disease, and 102 have died, although it is not known how many people have the disease in their blood.

Now health chiefs fear the latest scare could cut the number of people offering to give blood, with those who fear they could be infected not wishing to pass the disease on to anyone else. MORE than 20 people who could have the CJD timebomb in their blood have not been told, health chiefs admitted last night.

Twenty-two people were given blood contaminated with new variant Creutzfeldt Jakobs' Disease, and all but one will not be informed they could develop the human form of mad cow disease.

The Government said it would not tell the patients because the "current ethical advice"was that it would be better for them not to know. But MPs last night demanded those involved should be told amid fears they could unwittingly pass the disease on if they go on to give blood themselves.

The revelations came to light after it emerged a 12-year-old boy with haemophilia was given contaminated plasma from a donor with new variant CJD (nvCJD).

Health chiefs informed his parents, and the National Blood Service and the Department of Health found 21 other patients had given infected blood.

But the CJD Incident Panel, the Government's group of health specialists trying to manage the CJD outbreak, decided not to inform those patients known to have been exposed. A Labour MP called for that decision to be reversed. "I understand that we do not want to create a panic, but people should be told, " said Dai Havard MP.

But scientists say links between so-called mad cow disease and nvCJD have not been conclusively proved, and the health chiefs admitted they did not know whether those who received infected blood would definitely develop the disease.

"Because we don't know if they will develop the disease, the current ethical advice is that patients would not benefit from such uncertain knowledge, " said a spokesman for the Department of Health. Scientists have warned the transfer of mad cow disease into humans could be the biggest medical problem of the early 21st Century. Some predict hundreds of thousands of people could die from the disease, because the incubation period is thought to be as long as 20 years. The disease is incurable, and seems to affect mainly young adults who die a slow and agonising death.

Some scientists are warning nvCJD is a ticking timebomb in the population, although new cases of the disease remain steady at around 20 a year.

So far 111 people have been definitely diagnosed with the disease, and 102 have died, although it is not known how many people have the disease in their blood.

Now health chiefs fear the latest scare could cut the number of people offering to give blood, with those who fear they could be infected not wishing to pass the disease on to anyone else.


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