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From: TSS ()
Subject: Patients kept in dark on CJD risk, Blood donor died in CJD cluster
Date: May 16, 2005 at 8:21 am PST

-------- Original Message --------
Subject: Patients kept in dark on CJD risk, Blood donor died in disease cluster
Date: Mon, 16 May 2005 10:18:55 -0500
From: "Terry S. Singeltary Sr."
To: BSE-L
CC: CJDVOICE


Patients kept in dark on CJD risk
Blood donor died in disease cluster
Paul Whitehouse
BLOOD donated by a Yorkshire vCJD victim was given to patients who were
not told of the risk to their health for seven years, it has emerged.
Matthew Parker died in 1997 at the age of 19 in Doncaster after
contracting the illness, with his case attracting widespread publicity
because he was part of a so-called cluster of three cases linked to the
village of Armthorpe.
Before he was diagnosed, he had donated blood which was used to treat
seven people. When it became clear he had contracted vCJD, medical
authorities were told he had donated blood, but a deliberate decision
was taken not to tell the patients.
Now his father, John Middleton, is demanding a public inquiry to
determine why.
He told the medical authorities his son had donated blood at the time of
his diagnosis but never made the fact public.
He has spoken out after discovering the deliberate decision was taken to
avoid contacting those who had received his blood.
The patients would only have discovered the truth if they had attempted
to give blood themselves. They would have been advised they were
unsuitable but only told of their possible infection with vCJD if they
specifically questioned the decision.
However, it is understood the health service overturned its policy last
year following the death of a vCJD victim who may have been infected
through a blood transfusion.
Those given blood sourced from Matthew, who was an unusual blood group,
are believed to have been contacted privately and offered counselling.
Mr Middleton said: "As soon as I knew Matthew had vCJD I told them. The
doctor seemed shocked and I gave them Matthew's donor card, which had a
serial number on it which would have allowed them to trace the recipients.
"I left it in their hands, I couldn't tell them what to do, but I am
shocked that they didn't contact the people involved.
"It is absolutely disgusting because I thought it had been my duty to
report it for the sake of those people.
"Matthew had still been incubating the disease when he gave blood and my
heart goes out to the people who were given it.
"I am not a scientist and I don't know what drugs might have been
available.
"I think there should be an independent inquiry into what has happened.
I would be happy to talk to anyone if there was an investigation," said
Mr Middleton, who now lives in Cleethorpes.
The circumstances surrounding Matthew's blood throw open the debate on
whether those affected by potential health problems should be told. It
appears a new drug currently being tested on several vCJD patients
including North Yorkshire teenager Holly Mills may be beneficial and Mr
Middleton believes anyone potentially affected has the right to be told
so they could explore possible treatments.
Mr Middleton spoke out about the situation as it was also revealed that
the Armthorpe cluster could also have claimed the life of a fourth victim.
Matthew had grown up in Wickett Hern Road in Armthorpe, though he was
living elsewhere at the time of his death.
Another resident of the same road, Sarah Roberts, 28, died three years
after Matthew as a result of the same disease.
A third victim, Adrian Hodgekinson, lived in Harrogate but had been a
regular weekend visitor to Armthorpe to see relatives for 14 years until
1986.
The information linking another victim to the district has been made
available by the National vCJD Surveillance Unit in Edinburgh, which
monitors the spread of the disease in this country.
Their records confirmed that four victims either lived in or had links
with a five kilometre (three mile) area in Armthorpe.
Little information has been made available about the last victim, other
than that she lived in Doncaster for a short period and had some
connections with Armthorpe.
Although she is understood to have been in Lincolnshire at the time she
died, she was registered to an Armthorpe GP for five years until 1993.
An inquiry was launched by health services into the Armthorpe cluster
but failed to identify any direct links between the deaths.
No comment was available from the Department of Health about the
situation last night.
paul.whitehouse@ypn.co.uk


16 May 2005

http://www.yorkshiretoday.co.uk/ViewArticle2.aspx?SectionID=55&ArticleID=1027374

TSS





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