vCJD in the UK The Patients Perspective

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vCJD in the UKThe Patients Perspective

• Chris James
• Haemophilia Society UK
• October 2009

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Issues

• 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?

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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

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What have patients been told?

• 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

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Developments in 2009

• Discovery of abnormal prions at autopsy of a man
  with haemophilia announced Feb 2009
• UK Government updated its risk assessment
  probable cause plasma products
• Further letter to patients caused considerable
  anxiety within the haemophilia community

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Completion of Risk Assessment

• In 2009 UK Government published full risk
  assessment
• Main finding risk was greater from
  non-implicated batches than implicated batches of
  plasma
• No change to risk status of patients but greater
  anxiety
• UK Government sent letter to go to patients from
  Haemophilia Centres
• UK Society intervened and produced our own
  guidance

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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?

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The Test

• Department of Health
• Mapping out the consequences of screening blood
  donations for PrPSC
• Sets out the DOHs view testing, its
  implications, and how the health services would
  react
• Trade-off creation of new at risk groups, risk
  reduction, legal, supply etc

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The Test

• Potential for testing those at risk
• Clinical Governance Advisory Group recommended
  help in gaining access to test
• Increase Positive Predictive Value of test
• Access to a test with a specificity below that
  required
• May test positive but balance of probability
  would be against being infected let alone go on
  to develop clinical symptoms
• Raises problems with communication

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The Test

• Difficult to judge meaning of a positive
  screening test (Gigerenzer, 2002)
• Possibilty of raised anxiety
• Simple explanation can be effective in
  communicating meaning and avoiding high levels of
  anxiety (Wilkinson et al, 2007)

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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

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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)

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Care and Support- Informed choice

• Ensure access to designated neurologist and
  National Prion Centre
• Meeting demand for additional testing
• Provision of normal medical care not
  compromised
• Deal with problems raised by potential refusal of
  life insurance, employment etc
• Helpline support provided by Society

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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

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vCJD Meeting with Department of Health

• Purpose
• 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

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Thank You

• chris_at_haemophilia.org.uk