Re: Denver news article

[Guest guest]

tt - Making the disease reportable requires the Dr. to call the state and

report the case. I am hoping that this will cause the Doctors to investigate

the

disease and learn more about diagnosing it correctly so they can decide if the

case is reportable. As many as 13% are diagnosed as Alzheimers, or they develop

other problems such as pneumonia, die of it and that becomes the cause listed on

the death certificate.

Our medical community is not very aware of the disease and how to diagnose, or

of

new information that is available. This isn't meant to criticize the medical

community, only to say their work load is heavy and research is probably not

high

on their list of priorities.

Also want it reportable so the morticians can be informed of what they are

dealing

with.

They seldom know what disease their victim dies of, and in the case of CJD, the

embalmers and staff are at risk because of the infectivity of the prion. This

is

very true if an autopsy has been perfomed and the mortician has to repair the

body

to make it presentable - particularly a brain or spinal autopsy. I personally

believe the lymph system also becomes infective as the disease progresses. Most

of the mortuary equipment cannot be sterilized, so anyone that works on it later

and receives a puncture wound is at risk of becoming infected. When the wife

died

in March 98, there were four morticians that would not prepare an autopsied

body,

direct burial or cremation were the ony options. Since they have all had an

training class on the disease as a result of our efforts, I am sure there are

more

now.

Also what about the risk of having an OSHA violation for having a person work on

a

CJD victim and becoming infected - were they properly equipped and trained? The

court may have to decide. I called OSHA two weeks ago and they are still

studying

the situation.

One mortuary reported that normal mortician waste, blood, tissue, materials

normally goes into the sanitary sewer. Waste from a reported CJD victim is

considered hazardous and goes into the hazardous waste, and hopefully

incinerated. So the waste from the unreported or mis-diagnosed victim goes

into the sanitary sewer and likely down the river for the next town to process

as

culinary water. Their processes will not purify or sterilize it, so how much

does

in take in the water we drink to infect us - I don't know, neither did the Utah

Director of Environmental Control when I called her.

My state representative did not know about the disease, had never heard of it.

Every state senator and representative has recieved a 16 page handout containing

information on CJD and why we want it made reportable, also that we want CWD and

BSE monitored closely. The President of the Utah Funeral Directors Association

wrote a very eloquent letter to the Utah Director of Epidemiology and the

Director

of disease control asking that it be made reportable. This letter was included

in

the package to the legislature and the Govenor's Chief of Staff.

We have the State Committee on Agriculture looking at CWD and BSE. It will be a

major item on their next meeting with three people present to discuss what they

are doing to identify and control it.

There have been at least six deaths in Utah in 1998 from CJD. This exceeds the

theoretical rate for a population of 1.5 million.

I will try to send you an electonic copy of two letters we wrote and

distributed,

but that will be under a separate transmission. Thank you for your interest in

CJD enjoyed the telecon Tue night, I think you are doing your homework very well

- Mel in SLC.

JWitts@... wrote:

> Mel--I'm deeply immersed in the article right now. I'm wondering if you'd mind

> e-mailing me just a paragraph or so about your effort to get CJD to be a

> reportable disease in Utah, the six cases, etc., and why you think reporting

> is important. I have talked to a couple of people who heard about me through

> CJD Voice--one in California, one in Colorado. e-mailed that she'd

> lost her voice; I do hope she gets back to me soon. Time is of the essence.

> (Though my editor is also talking about perhaps postponing this story till

> next week, which would give me a bit of a breather!)

>

> Because of all the help from you and others, I think the piece is coming

> together pretty well. Many thanks--t