Variant Creutzfeldt-Jakob Disease (vCJD)

If you lived in the UK, France or the Republic of Ireland between 1st January 1980 and 31st December 1996 for a total period of 6 months or more (or received a blood transfusion in these countries at any time after 1/1/80) you will be permanently deferred from donating blood in NZ.

What is vCJD?

  • Variant Creutzfeldt-Jakob disease (vCJD) is a prion which is smaller than a virus. It is a rare human condition that affects the brain and causes severe mental failure, dementia and eventually death. It is fatal and there is no available treatment.
  • It was first identified in the UK in 1996 and even after 20 years there is still a lot about vCJD that is not known.  We don't know how many people could develop vCJD in the future or how long it will take for symptoms to appear, if they ever will.  Related diseases have appeared more than 30 years after exposure.

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How has vCJD been spread in the past?

  • The most common form of spread has been through food.
  • vCJD has also been spread in the UK by transfusion of blood components and possibly by injections of manufactured blood products.

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Can vCJD be transmitted via blood transfusions?

  • Yes. It is known that the abnormal prion protein (vCJD prion) can be spread by blood transfusion.
  • If we can avoid a serious and significant risk for people who receive blood transfusions we must take the necessary steps. When diagnosed, the disease is always fatal. The only means for avoiding any risk for spreading vCJD by blood transfusion is to stop collecting blood donations from people who have lived in affected countries during the outlined period.

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Is it possible to test donors for risk of vCJD?

  • Unfortunately not at the present time, as there is no suitable test available.
  • Attempts have been made to develop a test but they have not achieved sufficient sensitivity for testing blood donations.  No tests for vCJD are commercially available at present.  As New Zealand does not have the resources to develop a test ourselves, we look to several overseas laboratories who are continuing to work on this currently. It will likely be several years before any test might be available.  We continue to monitor developments.

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How come I can donate in the UK but not in NZ?

  • In the UK, the Government and Blood Service have taken dramatic steps to reduce the vCJD risk. While donor’s red cells and platelets are collected and used (due to the short shelf life they have no alternative), all of the plasma collected from blood donations is destroyed and anyone who has ever received a transfusion or injection of a blood product is prevented from donating. Instead plasma is purchased from North America and shipped to the UK for use in their hospitals to reduce the vCJD risk, but at a great cost to their health services.

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Why don’t we follow the lead of the UK and just destroy the plasma component instead of a permanent deferral?

  • New Zealand donors who meet the vCJD donor selection criteria are regarded internationally as having one of the lowest risk levels for vCJD. It would not be possible to obtain safer plasma for transfusion or manufacture of specialized plasma products elsewhere in the world.
  • New Zealand has enough eligible donors and potential donors to provide sufficient blood and blood products, including plasma.  Collecting a whole blood donation and destroying the plasma is an extremely costly process.  It is a last resort and only necessary in the UK and Ireland because there is no alternative.

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Why can’t we collect blood from people who have lived in the UK during that time period and use it for those from there?

  • vCJD is a devastating fatal disease and we are required to do everything within our control to reduce the risk of spreading this infection through a blood transfusion.  We are obligated to ensure all people in New Zealand has access to a safe and certain blood supply, regardless of where in the world they come from or have visited. 
  • It is not safe or practicable to try to provide separate compartmentalized Blood Banks for different recipients.

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How many cases of vCJD have occurred in NZ and other countries?

  • Fortunately, NZ has not experienced any case of vCJD – we are one of the few first world countries, along with Australia, that have had no cases. We are regarded as having one of the lowest risks for vCJD in the world.
  • The most recent data from the UK CJD surveillance unit identifies 178 deaths in the UK and 52 (including 27 in France and 5 in Ireland) elsewhere in the world as of April 2016.  While the number of cases of vCJD in the UK has reduced significantly in recent years UK authorities continue to be concerned with the risks based on data they continue to gather from testing tissues removed from patients during surgical operations.

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When was the last time someone "caught" the disease or developed the symptoms?

  • No one, anywhere, can answer your question at present. The long incubation period for vCJD means it may take years or decades between the time a person ‘catches’ the condition and develops disease. 
  • In the past two years, two cases have been reported: one each from Italy and the UK.
  • It is now believed that some people may not necessarily develop disease but may be able to spread the condition from time to time.

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Why am I excluded if I don’t have any signs of having vCJD?

  • Studies on thousands of UK tonsil and appendix tissue samples removed during surgical operations show that the abnormal vCJD prion protein is present in the tissues of some people in the UK.  These people have no symptoms at present but the studies indicate that vCJD may occur in affected people in the future. 

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What’s the actual risk of getting vCJD – surely it’s not an issue?

  • The UK National CJD Research and Surveillance Unit in Edinburgh indicated that one in 2,000-5,000 people in the UK may be a carrier of the disease, so it is still a real risk.

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Does being a vegetarian make you safe from the risk of having vCJD?

  • Unfortunately it doesn’t. At least one individual who is said to have been vegetarian has died from vCJD. It is likely that some risk food material may have entered food processing systems and spread the infection more widely than just to those who ate meat.

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When did NZBS last review the vCJD donor eligibility criteria?

  • NZ Blood Service medical specialists continually review data on vCJD and other important conditions that affect blood donor selection.
  • Current NZBS policies in this area are based on recommendations developed by a working group comprised of New Zealand experts on vCJD and BSE along with relevant stakeholders (clinicians and patient groups).

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How many countries have the same rule as NZ?

  • This approach is used in all developed countries around the world. The criteria are consistent with those in place in Australia, Canada, USA, Singapore and Hong Kong.  The rules are even stricter in the USA and Canada than in NZ.

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It was 20-30 years ago. It must exclude thousands of potential donors?

  • Yes we estimate that this affected approximately 9% of our donors when the vCJD selection criteria were introduced. We are very fortunate that we are able to maintain the blood supply as the number of available  and eligible donors in NZ is sufficient to meet the demand. However it does mean we regularly need to remind people to donate and to advertise for new donors.

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What about babies born to those who lived in the UK, Ireland or France?

  • Yes, your children can give blood as long as they meet the eligibility criteria. E.g. if THEY haven't lived in the UK, France or Republic of Ireland between 1st Jan 1980 and 31st Dec 1996 for a total of 6 months of more - and meet all the other criteria - then they can give blood!

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Is it still a problem in the UK or other developed countries?

  • Yes. While vCJD is not being diagnosed frequently anywhere in the world at present, a serious concern exists that people who have the abnormal prion in their tissues but are not sick from it, might accidentally spread the abnormal prion through blood donations. This is a very serious concern but it is not possible to measure the size of the risk at present.

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Where can I find more information about vCJD?

  • Read our brochure “CJD – Creutzfeldt-Jakob Disease – Information for Blood donors”
  • If you wish to read scientific papers on the subject you can find the scientific literature by searching with Google Scholar, using the search term: ‘vCJD risk from blood transfusion’.  Some of the scientific papers provide a review of evidence and opinion from the world’s leading scientists and will provide overall summaries of the information.  Note: some journals require payment for access to recently published papers.  More than 300 papers are present in the international literature on this subject.
  • Some links can be found here:

http://www.who.int/mediacentre/factsheets/fs180/en/

https://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disease

http://www.cdc.gov/prions/vcjd/

http://www.bseinfo.org/vcjd.aspx

https://app.box.com/s/hhhhg857fjpu2bnxhv6e (This weblink will access the UK Advisory Committee on Dangerous Pathogens updated 2016 report.  The item provides technical advice to the UK Government and Health Services.  It reviews the information available from the UK and from relevant scientific research.)

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 Read more about this in our Brochure. [PDF, 55 KB]

Most people who travel outside New Zealand are still able to donate blood when they return. However, travel to an area where there is a risk of exposure to certain diseases can result in symptomless infection(s) that can be transmitted through blood transfusion.

Go back to the Donating after Travelling tool.