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The Haemophilia Society

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					     vCJD in the UK
The Patient’s Perspective

       Chris James
    Haemophilia Society
                 October 2009
• What are the expectations of patients
  in the UK?
• Do they want to be tested and if so to
  know the results?
• Who will do the tests?
• What support will be available?
• What would be the implications of a
  positive test in terms of health care?
              The UK Risk
• Everyone who ate beef in the UK between
  1980 and 2001 has a very low but continuing
  risk of developing vCJD

• There is an additional slight increase in risk
  for people who recieved plasma products in
  the same period
    What have patients been
• Between 4,000 and 5,000 received a letter in
  2004 – all those with haemophilia who were
  treated with UK plasma products between
  1980 and 2001 are ‘at risk for public
  health purposes’

• Also offered chance to find out if you were a
  recipient of an implicated batch

• From a question to UK Parliament we know
  the implicated group is 802
    Developments in 2009
• Discovery of abnormal prions at autopsy of a
  man with haemophilia – announced Feb

• UK Government updated its risk assessment
  – probable cause plasma products

• Further letter to patients – caused
  considerable anxiety within the haemophilia
         Completion of Risk
•   In 2009 UK Government published full risk

•   Main finding – risk was greater from non-
    implicated batches than implicated batches of

•   No change to risk status of patients but greater

•   UK Government sent letter to go to patients from
    Haemophilia Centres

•   UK Society intervened and produced our own
        Impact on Patients
•   Suffering discrimination due to being „at risk
    for health purposes‟

•   Yet another infection following HIV and
    HCV – “....will it never end?”

•   Uncertainty over vCJD and the risks

•   Are haemophilia patients are being singled
    out as an easily identifiable group?
               The Test
Department of Health:

“Mapping out the consequences of
  screening blood donations for PrP ”SC

• Sets out the DOH‟s view testing, its
  implications, and how the health
  services would react
• Trade-off – creation of new at risk
  groups, risk reduction, legal, supply etc
                  The Test
•   Potential for testing those „at risk‟
•   Clinical Governance Advisory Group –
    recommended help in gaining access to
•   Increase Positive Predictive Value of test
•   Access to a test with a specificity below that
•   May test positive but balance of probability
    would be against being infected let alone
    go on to develop clinical symptoms
•   Raises problems with communication
               The Test
• Difficult to judge meaning of a
  “positive screening test” (Gigerenzer,
• Possibilty of raised anxiety
• Simple explanation can be effective in
  communicating meaning and avoiding
  high levels of anxiety (Wilkinson et al,
                 The Test
•   Testing may not be emotionally devastating
•   Best predictor of depression post-testing is
    pre-test depression, not test results
    (Broadstock et al, 2000)
•   N.B. These people had decided to undergo
    testing, and were treated in the context of
    intensive pre and post test counselling
•   Against the positive there is a reported
    case of a suicide on being told of a
    “positive” HIV test and one amongst those
    “at risk” of vCJD
                  The Test
•   Qualitative research is currently being
    completed in the UK
•   Exploring how individuals judged to be „at
    risk‟ of prion disease reacted to notification
    of status
•   Relatively few individuals
•   Provisional results suggest that most were
    able to deal with the unwelcome
    information and continue their lives
                                (Elam et al, 2009)
 Care and Support- Informed
• Ensure access to designated
  neurologist and National Prion Centre
• Meeting demand for additional testing
• Provision of „normal‟ medical care not
• Deal with problems raised by potential
  refusal of life insurance, employment
• Helpline support provided by Society
      UK Society Position

• We call for any test for vCJD to be
  brought in as soon as available and
  with proven efficacy

• “Gold standard” Pre and Post Test
  Counselling and funding for on-going
  helpline support
      vCJD – Meeting with
      Department of Health
• for people with haemophilia to
  give their views and experiences as
  people at risk of vCJD
• to inform people with haemophilia,
  and those responsible for their care of
  current vCJD issues
• describe opportunities for participation
  in research studies
    Thank You