Letter to Koplan

[Guest guest]

Here is the letter inviting Koplan to the conference. I know there

is so much to say, I feel that I have covered the latest topics we have

spoken about. It will be interesting to see what he says.

Robin

P. Koplan, M.D.

Director

National Center for Infectious Disease Control

1600 Clifton Road N.E.

Bldg. CLFT 3 116

Mail Stop A39

Atlanta, GA 30333

Dear Dr. Koplan,

Thank you for acknowledging my name being added to the Citizen Petition

regarding transmissible spongiform encephalopathy. I will be awaiting your

response.

I am also writing to invite you to a conference being planned for people who

have been affected by Cruetzfeldt-Jakob Disease. It will consist of families

of CJD victims; individuals who have received blood recall notices and also

the human growth hormone before it became synthetic. We also have extended

invitations to funeral directors and people in the medical field.

We as CJD families are unhappy with the way the Centers for Disease Control

handle the reporting of CJD cases. You can obviously tell this from the

Citizens Petition. We feel that it does not want to know or find all the

cases, hence not making it a mandatorily reportable disease. Being a

computer based group we have new people sign on with us every week who have

been affected by CJD. I am sure the ones who don't have computers are

equally as many or more.

We also feel that it doesn't want to acknowledge that there are more cases of

CJD in younger people, not just in the so-called average age of 57-70. I can

tell you of three who lived short distance from each other, age 27, 30, and

35. The similar factor here, they were hunters. That would mean Chronic

Wasting Disease. Is anything being done about this? There is documentation

that it is in the United States.

We keep being told there is no BSE in the United States. I understand that

of 98,000 downer cows only 7,000 brains have been tested for BSE. Do you

really think that this is a significant enough amount to feel comfortable

with our lives? It is a pittance. The United States has used the same feeding

practices that the U.K. did. Why would you think that we could be so lucky

as to bypass an outbreak of BSE? America is a great country but I don't

think that makes a difference to BSE.

We understand what an economical impact it would make should BSE be found in

our beef. On the other hand what a horror it would be to have victims of CJD

numbering the same as victims of AIDS. After all it was swept under the rug

till it couldn't be ignored any longer. At least with AIDS there are some

treatments; there is time for the victim and hope. With CJD there is

nothing.

Now there is one more thing that we have just learned about. It is being

recommended not to have autopsies because it may contaminate the embalmers.

Has there been documentation done showing that more funeral workers have died

from CJD? Is this just one more step to stop the diagnosing of it? You know

that families want a proper funeral for their loved one and this could stop

the funeral home from doing this or from the family having an official

diagnosis for fear they won't get to have the funeral. As long as the

funeral home takes the universal precautions there are no problems.

You may think we are alarmists but we have been through the horror of CJD and

it's not something we would wish on anyone. We have a great fear for our

children and grandchildren.

Please consider coming and speaking with us. We would like answers. We are

interested, intelligent and would like to work together, instead of against.

Top researchers in the U.S. have graciously agreed to attend and speak.

Dr.'s Brown and Clarence Gibbs. Dr. Bernardino Ghetti and Dr.

Bastian. Hansen who represents the Consumers Union and Marie Kassi

who is a lecturer on contamination and burial. There may be others but have

not had a confirmation from them yet.

I am enclosing a few brochures on the conference. Please know that you would

be welcome. My e-mail address is on the brochures along with an address.

Contact me should you have any questions.

Sincerely yours,

Robin