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 .
