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Not being vegetarian, I’ve often felt uneasy as the BSE and CJD scandals
have unfolded, wondering what I might have eaten in the past.
But I’m lucky.
Imagine having to stick out your arm virtually every day to take an
injection that might be contaminated with CJD.
That’s just what haemophiliacs in London over the age of 16 have to do when
giving themselves Factor 8 blood clotting treatment.
The story hit the papers again last week because it has been confirmed that
several batches of Factor 8 have come from blood donated by a man who died
of variant CJD. These batches of Factor 8 went on to be used by a number of
haemophiliacs.
Of course, the Labour government, just like the Tories before them over BSE,
repeatedly states that there is no evidence that CJD can be transmitted
through blood. Sound familiar? We’ve been here before. Remember the repeated
statements that there was no evidence that humans could contract a human
form of BSE through the food chain? But it happened.
The simple truth is that we don’t know for sure what the risks are. The
scientists aren’t to blame - they are working hard to figure out how CJD
works, what causes it and what makes it spread.
But in the meantime, haemophiliacs are forced to treat themselves with
medicine that may in fact give them CJD. Faced with this dire situation,
some haemophiliacs are simply refusing treatment, preferring to carry on
bleeding rather than take such a horrifying risk.
These risks, though, do not need to be run. There is a safe, synthetic
version of Factor 8 available. It is given freely to every single
haemophiliac in Scotland and Wales. In fact, even if you are Scottish or
Welsh living in England you will get the safe version, but English adults
cannot.
To receive the safe treatment in England, you have to be under 16 and
uninfected by HIV or Hepatitis C which you would have already got through
earlier Factor 8. If you are older or you have already been infected with
either of those two diseases, you are not eligible for safe treatment. The
idea that because you’ve been infected with Hepatitis C it is ok to make you
run the risk of further infections is distasteful.
I first found out about this issue because a close relative of mine has
haemophilia. I have witnessed first hand the psychological torture of having
to have a treatment that though it may save you from bleeding, may also give
you something far, far worse.
Of course the political problem is that there aren’t many haemophiliacs in
numerical terms - so there’s not a lot of votes in this one. And we know
that the Government only listens when it has a big gun to its head - the
welcome but partial climb-down last week on the proposed tube privatisation
for one.
But in the run up to a General Election, Governments, strangely enough,
develop much better hearing. So I hope they are listening on this one. I’m
doing my best on the GLA to make them listen, but we need to put greater
pressure on the Department of Health. If you’d like to help make them
listen, please write to Lord Hunt, Department of Health, Richmond House, 79
Whitehall, London, SW1A 2NS. I would be grateful for a copy of any replies
you receive.
Lord Philips, who chaired the official inquiry into BSE, concluded that we
must make sure “precautionary measures can be taken to protect human health
in a situation of uncertainty.”
Well, the precautionary measures are available. They’re already in use in
Scotland and Wales and for children. Don’t adults in England deserve the
same?
(c) Lynne Featherstone, 2001
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But in the run up to a General Election, Governments, strangely enough, develop much better hearing. So I hope they are listening on this one. 