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Speeches Concerning CJD

Conference on CJD - Recall, Withdrawal, Notification and Recipient Notification, Ontario, Canada  June 1 & 2, 1998


JIFSAN TSE Workshop-Baltimore, MD June 1998


 

"Good Afternoon Ladies & Gentlemen. First of all I am honored at being invited to attend and speak at this conference. I will tell you about my sons situation and then about how I came to the decision of not Notifying people who have received tainted blood.

My son received Albumin. in 1990. I was notified of the recall in 1996, It went as follows: to date there has been virtually no evidence that your child will develop CJD. Therefore, there is little reason for concern. But we also know that the more informed you are about this situation, the more assured you will feel. How can anyone get any reassurance from that letter...it didn't even state it was a theoretical problem and with stating that there is virtually no evidence does not state that there are no confirmed cases.

I attended their conference they held in May 1996. I left that conference in dismay, overwhelmed by the information and gravely worried about my son. I was left on my own to deal with this anxiety, with no other support given, it was horrendous. It was a time of such limited information and CJD being the disease of many unknowns. In the two years that followed I did research at whatever means were available, the library, I wrote Health Canada and the Canadian Red Cross. Until I went on the Internet I found information to be limited. Any mailings were just of statistical information, and some even said to discuss with your family doctor....many of them don't even know anything about it and you have to educate them. My initial reaction was that I was glad I was told, I felt it was my right to now......now I don't think I should of been told. It causes me much pain and worry. Especially the unknowns of the disease. Upon asking questions as to whether my son would be allowed to donate blood the response was one I had not expected it was then that I changed my opinion and thought.

Why bother informing us at all then? To cause myself as a mother much pain and worry for 2 years it will be something I will carry with me to my grave. You can't even imagine what I and others have lived thru, we are told of this horrific disease and our relation to it, and of the recall which seems important enough. But in the same breath I am told it is no big deal, why are you so worried and I am treated as such.  It is my son we are talking about here. I was and am very frustrated with all of this. I assumed the main reason I was told was so that my son wouldn't be able to give donations of any sort blood or organs until we get answers, until I was told it was a step no-one was prepared to make. So if years down the road when we get some answers other people do not have to go thru the pain I have endured. With United States recently suggesting to use recalled Albumin in emergency situations when it is considered to be so risky it makes you wonder if the crisis is not so great that I had to of been told and others alike. Unless you research this on the Web and know who to ask you are left with only assumptions.

When speaking with a representative from RED CROSS she said not to worry because by the time your son has become of age to donate blood we will have some answers. My response to her was what about the teenagers that got these letters and would be eligible to donate this year. are we re-infecting with infectious blood by doing nothing preventative with recipients of tainted blood. I was really emotional with her I really think she thought I was over-reacting to it all, and maybe I was but it was important enough to tell me so why shouldn't I react this way.

With the decision to inform being based on ethical requirements of what to do and not whether the risk is real seems ironical that we are told of this one and not of other possibilities. It seems it is alright with some hospitals not to notify and with others to notify, those notified I feel have been given an injustice, you took away my piece of mind and sometimes I think my sanity. With researchers suggesting that if the incubation period for CJD is 30 years and over 1/2 of all donor pools would be contaminated would that now mean that in time at least 1/2 the population would need notification letters eventually and with all the products that contain blood and blood products would it now make it impossible to trace all the uses of such products, for example shots which contain Albumin. I do not rationalize now why we are told. I feel it would be more beneficial to keep a registry of the donor recipients to be used when the time of proof and answers are available.

If the risk from acquiring CJD from blood is theoretical, not small or really small but theoretical why are we the only ones being informed of such a possibility. There are many other situations which are theoretical, such as the risk that cancer could be transmitted by blood transfusion or that allergies could be transmitted. Since the risk is only hypothesized and not demonstrated in these cases as well why are they not notified if you set a precedent with one then you must follow thru in all areas. Not just pick one.

We do know that this disease has been around ever since transfusions were begun I believe in the past a connection would of already been made if it was possible for CJD to be transmitted this way when I think of the constant transfusions some people need to be able to live. I have spoken to a woman who has received some 30 recalls there are many of these people and they would of succumbed to CJD if it was possible. I do believe that recalls of tainted blood should continue but as we know the blood could of already been used these Recipients of this blood should be kept in a registry . I can not believe that anyone can be held liable for doing such a practice the unknowns of so much with any disease is cause for research to get the answers we all need, not dropping it in the laps of recipients and expecting us to continue on as normal I wonder how you expected us to react to such information. I am fortified in knowing that Health Canada and the CDC are presently doing studies on risk factors of blood. It is unfortunate that these studies were not completed before sending out notification letters.

I have since spoken to other parents thru CJD VOICE, which is a support network for the people involved with CJD either thru losing someone to this horrendous disease or receiving notification, it also tries to raise awareness among the general public and increase funding. These parents who have been notified are terrified and frightened and want to know what their chances are of their child getting CJD really are and like one father asked how long do they have to live. They feel like they have no where to turn for answers, it is all right to logically expect us to understand that the risk is minimal if at all. But emotions usually rule out logic. I am fortunate on one aspect because my child is not inflicted with any other medical problems I can only imagine what they are going thru.

In other countries they are not telling the recipients....such as in the Netherlands they did not want to alarm the recipients which I feel is a good thing as once you are told it is hard to listen to the logic without concrete proof. This is our loved ones, our children, someone we are supposed to protect, but in life as we know it we cannot protect them from everything.

Other thoughts I have gone thru are how do I tell my son about this, if something was to happen to me, would he really need to know just because someone felt we needed to know. I have also felt do I need to stop him from donating blood or organs until research proves to me that it is alright for him to do so. It was important enough for me to be notified but not enough for him to be considered a risk factor. As long as I am alive he will NOT be told it would be too much for him as I am sure it is too much for a lot of people.

At some point I have also believed the only reason we were told was because of the legal aspect when I rationalize the history it is the only reason I can come up with. No one can be held responsible for the unknowns of any disease, it would be a greater benefit to have more knowledge, not have hundreds of people feel like they are lepers in society. I am also worried that if others do find out about my son's situation in our community he would become an outcast. We have seen that in the past with other diseases.

There is much confusion when you receive this letter of notification and when you are done researching all that is available you become frustrated, angry and many tears are shed. I believe some of the examples I have stated illustrate the reasons for such emotions I have personally thought of it as a pendulum swinging and each side has it's own emotions, and each side its own rights and wrongs.

Never-the less I am still left with my sons notification letter nothing will change what has already been carried out but what I am doing is hoping for a turnaround in not telling more people and having them deal with such an unjust and inhumane thing such as notifications for theoretical risk. I would also add where would some of us be without these products today.

THANK-YOU"
 


 

JIFSAN TSE Workshop Baltimore, MD, June 1998 - Linda Zambenini RN

Hello my name is Linda Zambenini. I am a registered nurse representing CJD Voice and until this spring I worked in the Immunization and State Yellow Fever Center of a large Midwestern university.
 Firstly before I begin I would like us all to take a moment to remember why we are here. I'm here because of my concern for the Public Health and the prevention of any future spread of IATROGENIC CJD and NVCJD VIA BLOOD PRODUCTS. Any contribution I can make to this effort I would like to dedicate to the memory of the victims of CJD but more personally to SEBASTIAN ROUSSEL, the 19 year old son of my good friends Michelline and Robert Roussel in MONTREAL. He died, tragically, just this February 5th of IATROGENIC CJD from a LYODURA DURA MATER GRAFT. I am sure he is with us here in spirit.

From March 1996 with the announcement of the original 10 NVCJD VICTIMS IN ENGLAND , until last fall my interest in prion disease was merely academic centering around BSE and a fascinating new pathogen.  But last fall after the release of the Swiss B-LYMPHOCYTE STUDY and this winter after attending the Blood Safety and Screening Conf in McLean VA. and then reading Dr Cashman's Monocyte Study on March 1 st. my interest became much more personal and professional for me as I became increasingly CONCERNED about the safety of the international blood supply and the current and future safety of our blood products and vaccines that I personally administered.  A mere 3 days after returning from the Conference in February the the British took the UNPRECEDENTED STEP of banning their own POOLED BLOOD PRODUCTS AND VACCINES PRODUCED USING THOSE BLOOD PRODUCTS.  I AM concerned about the transmission of CJD via blood products but much more so about the possible transmission of NVCJD.

The university town I live in has 30,000 students and many many international students.  My concern is that at this time any one of them from the UK CAN SELL THEIR PLASMA or DONATE BLOOD without any restriction in this country even though they are banned from doing so in ENGLAND and the European Union is now taking steps to ban UK donors.  I did an informal phone survey of all the donor centers, the American Red Cross and the Plasma Collection Center in my town more than a a month AFTER the UK Blood Ban to find out if they had heard of it and if they had received any guidelines from anyone to screen out UK or EU donors.  NONE OF THEM HAD EVEN HEARD OF IT. MOST HAD NEVER HEARD OF A PRION. A COUPLE OF THEM DID WANT MORE INFORMATION BUT A COUPLE OF THEM TREATED ME LIKE I WAS CRAZY EVEN THOUGH I GUARANTEED THEM I WAS A REGISTERED NURSE AND ALL THE INFO WAS AVAILABLE ONLINE ABOUT THE UK SITUATION.  

NONE had been advised by the FDA or the CDC about the situation in the UK and NONE had any Guidelines for screening out UK donors.  I WAS AND AM HORRIFIED. The plasma collection center said that they screen out donors from 7 African Countries. This was the only restriction as to country of origin.  I also spoke to the Chief Medical Officer in charge of the Blood Donor Association for the entire south-central area of my state and asked him the same questions . He stated DISBELIEVINGLY and I quote:
"What do you mean guidelines about screening out UK donors... why?" After I explained to him about the blood ban in the UK he shot back: "Well, if that WERE true, I am SURE the FDA would have notified us of it"  He then asked me dismissively to fax him "whatever PROOF I had" from the London times and hung up.

My mission here is to get UK and EU donors banned in NORTH AMERICA.  Prior to the development of the HIV ANTIBODY SCREENING TEST We screened out Haitian donors .....and currently residents of some African Countries are automatically screened out. At least where I live.  So this move would not be unprecedented to protect the blood supply here.  I urge you to do so as soon as possible .  Finally, I want to leave you with my favorite quote and the essence of why I persist in this battle.....  It is from the former US SURGEON GENERAL, DR WM. H STEWART:

"IN PROTECTING THE PUBLIC HEALTH
ABSOLUTE PROOF COMES TOO LATE.
TO WAIT FOR IT IS TO INVITE DISASTER
OR TO PROLONG SUFFERING UNNECESSARILY."

THANK YOU .
 

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