The National Blood Safety Council Conference on "Variants of CJD and Issues
for the Blood System"
May 6-7, 1999, Vancouver, Canada
Speech by Paula , Co-founder, Blood Recall/Withdrawal - Creutzfeldt-Jakob Disease (CJD)
A lot of what has been discussed over these 2 days I have already received answers, but that is only because I am here, there are a lot of others who are not able to attend and get the information. Therefore I will continue on with what I was going to say.
Creutzfeldt Jacob disease Just 3 years ago I couldn't pronounce it let alone know what it meant....imagine receiving a letter that your child got blood from someone who has died from it!!! And to be treated like you were crazy for worrying about the fact your child may die from it.
So little is know about variant CJD so UK donors should not be allowed to donate.....whoever said much more was known about human Classical transmission????????
People should have the right to Informed Consent. People should have the right to know and be informed from the beginning not after when there is no decision to make. Lately anything medical you sign your life away as it is not their fault but the known risks are explained to you PRIOR. It is the informed decision that is a necessity before. It is easier to understand then than after when there is nothing you can do to change it. Informed consent should cover products such as vaccines, IVF (Vitro Fertilization cultures), MMR, polio, botox and allergy shots etc., where you don't even know a blood product is used.
I know at present that out of all the notifications of recall that were sent out in the years prior that not one more notice has been sent out informing the consumer that you now believe the blood is all right to be used or of the new information that has lead you to believe that. That I believe is our right to now. The "NEW" scientific information which was spoken of at the time of the Mr Mckewan's diagnosis and blood quarantine has not been forthcoming.
I do have a few points I would like to be known about Mr Mckewan's case, or known as the Utah case. Firstly, the case had a 29 year onset, strangely young in age to have contracted CJD In December there was no public knowledge of new scientific data to prove that it cannot be transmitted in blood. I have not heard if a tonsil biopsy was done which might of established early on whether or not his white blood cells were affected as they are in nvCJD. He did eat meat that was hunted in the affected state of cwdCJD and I wonder if beef can transmit to humans why can't deer.
What went wrong with my notification and what would make it right. If someone so felt that it was a necessity to know my son received recalled blood of theoretical risk then they should of made sure that help and information was readily available for me, I sought for answers like where did this theoretical risk come from? Why are they telling me? How has it and will it affect my son's life? There were no answers coming. I think if you want to notify about something that you know so little about you should think and plan strategies before informing the mass public. It all was dropped into hospitals laps and left for them to decide.....no directives. I felt as lost as I believe the officials felt.
It is confusing to many why the blood of CJD relatives is deferred when the blood from a CJD victim is used. So is the reasoning on why CJD blood is not allowed in individual units but as a pooled plasma it is. Just as recently confirmed that some blood manufacturers are still recalling and/or not using CJD blood while others are. The confusion and misunderstanding in the public is there. Beware of what you do not know as it could come back to haunt you. In regards to lookbacks, has it been long enough? Even the VA study has been criticized for this. You discount 8 months for transmittal by blood but assume 4-5 years is ok for something that needs 15 to 20 years of incubation time.
In short you must inform the public now all new science related to CJD blood either Classical or Variant.
You Must let informed consent prior to usage of blood products.
Clear understanding of your policies should be made. New directives should be clearly stated to all who it involves.
Studies and research should continue
Continual consumer input should be taken as what you decide effects us.
Thank-you