updated 4/22/2004 11:30:29 AM ET 2004-04-22T15:30:29

Guests: Patrick Singh, Terry Schwan, Janet Skarbek, Bill Fielding



Mad Cow: could it happen here?  This woman is suffering from one of the world‘s most dreaded illnesses.  It‘s the human form of Mad Cow Disease, and her family believes she got it by eating contaminated beef.


ANNOUNCER:  Tonight a young woman‘s two-year struggle to stay alive and the stories of two others who didn‘t make it. 

So what are the chances you, or someone close to you, could get this disease?  Meet one woman who says your odds are increasing. 

Is American beef vulnerable to Mad Cow Disease? 

UNIDENTIFIED MALE:  Some of the ranchers won‘t be able to withstand the financial loss.

ANNOUNCER:  Or is the Mad Cow scare just a lot of hype?

UNIDENTIFIED FEMALE:  The risk of heart disease from eating too many hamburgers is much greater. 

ANNOUNCER:  Tonight, the truth about Mad Cow Disease. 

UNIDENTIFIED MALE:  It‘s important for the whole industry.

ANNOUNCER:  From Studio 3-K in Rockefeller Center, Deborah Norville. 


DEBORAH NORVILLE, HOST:  And good evening.

For the next hour, we hope to bring to light what is considered a medical mystery. 

There‘s still relatively little known about Mad Cow Disease.  But this much we do know: it is extremely rare in humans.  In fact, all totaled there have been about 150 cases worldwide.  But now there are questions about whether Mad Cow Disease might be in the United States. 

Humans can get the disease from eating infected beef products, but there has never been a confirmed case in the United States.  Almost all of the cows infected with the disease have been in Europe. 

But the United States got a big scare late last year when a cow in Washington state was diagnosed with Mad Cow Disease.  Investigators traced that sick cow back to a Canadian farm where it had apparently been fed tainted feed. 

Now, the human form of Mad Cow is known as Creutzfeldt-Jakob Disease, or CJD.  You can get it from eating tainted meat, but you can also get the disease naturally through a mutant protein in the body which then travels to your brain. 

The CDC says it has never detected a case of CJD in this country due to eating contaminated American beef.  Now, about 200 cases of CJD do appear nationally every year, but clusters have been reported in Pennsylvania, in Florida, Oregon, New York, Texas and New Jersey. 

In fact, New Jersey‘s two U.S. senators have now asked for a federal investigation into whether Mad Cow Disease caused the deaths of 13 people since the late 1980‘s.  All 13 worked or visited a racetrack in Cherry Hill, New Jersey. 

Carrie Mahan died from CJD four years ago.  She was 29 years old.  She worked at that racetrack.  And after Carrie died, her friend, Janet Skarbek, started asking some questions and found what she thinks is a cluster of 13 deaths due to CJD in her southern New Jersey community. 

Janet Skarbek is here in the studio with me now. 

Good evening.  Nice to see you. 


NORVILLE:  Also with us tonight is Terry Schwan.  Terry‘s son, Jeff, died from CJD in 2001.  Jeff was just 26 years old. 

The doctors don‘t know why either of these people got CJD.  There is no scientific proof that either Carrie or Jeff died after eating infected belief.  But both Janet and Terry believe that their deaths are related to American beef.

And tonight, I‘m also joined by Patrick Sing.  Patrick‘s daughter Charlene was diagnosed in April of 2002 with CJD.  Doctors believe that she did contract the disease from eating contaminated meat in Great Britain.  She is the longest surviving person with the disease.

And I welcome all of you to our program tonight.  Thanks for being with us. 

First, Mr. Singh, let me ask you how is your daughter doing today? 

It‘s been a rough few years for her, I‘m sure. 

SINGH:  Well, she‘s hanging in there.  She‘s not deteriorated at all.  She started the treatments at the multi-hyperbaric (ph) center in Fort Lauderdale. 

NORVILLE:  And the treatment that she‘s using is pretty—pretty radical.  She is spending a great deal of her time in a hyperbaric chamber.  And that‘s doing what for her?

SINGH:  Well, it seems to stabilize the disease somewhat.  Since 2002 she has not really shown any degree of getting any worse, basically. 

NORVILLE:  But how bad off is she?  Does she recognize you and your family?  Is she able to be aware of her surroundings?

SINGH:  No, she does not.  No. 

NORVILLE:  It must be so heartbreaking for you. 

SINGH:  Oh, my gosh.  It is, very much so. 

NORVILLE:  How did she get the disease?  She just graduated from college when she started getting sick. 

SINGH:  Yes.  She actually graduated from the university in 2001.  And we first noticed something was wrong with her in late 2001, say October or November, that she was becoming very irritable, forgetful and somewhat—we thought she was depressed. 

NORVILLE:  And not an unlikely thing.  A 20-something-year-old kid.  There‘s a big change in her life.  But the depression diagnosis didn‘t seem to fit? 

SINGH:  No, because after she was coming home from work one evening and she totaled her car, I knew that something was definitely wrong.  And this wasn‘t depression. 

And after about two weeks after that I noticed her right hand begin to shake.  And you know, I said well, you know, depression doesn‘t cause this.  Even being told by the doctor that she was depressed, I would not - - I did not believe that. 

NORVILLE:  And when did they finally diagnose her correctly as having


SINGH:  Well, she went back to the U.K. with her mother in February, and they did a lot of tests in the U.K. And she was actually diagnosed in April of 2002. 

NORVILLE:  And what was your reaction when they told you she had the human form of Mad Cow?

SINGH:  Devastated somewhat.  I mean, even today I just can‘t believe it.  I mean, you know, how could my daughter come down with this wretched disease?  It just seems unfair.

NORVILLE:  And they know that it was because she consumed beef when she was living in Great Britain?

SINGH:  They believe so.  They actually—there is no other way of catching this disease but rather than eating contaminated beef, that‘s correct. 

NORVILLE:  I‘m going to come back to you in just a moment, Mr. Singh. 

Terry, I‘d like to talk to you.  Your son Jeff was just 26 years old when he was diagnosed and died within such a short period of time.  What was Jeff‘s situation?

TERRY SCHWAN, SON DIED OF CJD:  Jeff was a very normal healthy 26-year-old young man who graduated from college and was working as a design - - electrical design engineer. 

And he began losing his memory, losing his vision.  He became unable to sleep well, and that was in May of 2001.  And by September of 2001 he was dead. 

NORVILLE:  How did it happen so quickly?  CJD just does that.  It‘s an incredibly rapid moving disease.  At what point did you know that this was what you were confronting medically?  I‘m sure the diagnosis was not an easy one for them to come by. 

SCHWAN:  No.  The diagnosis took a while in coming.  We took him to the hospital in July of 2001.  And we didn‘t get the actual confirmed diagnosis until September 2, and he died September 27. 

NORVILLE:  How do you think he got it?

SCHWAN:  Speculation is beef by-products from protein supplements.  We were asked by the CDC after he was diagnosed if he had had any products from General Nutrition Corporation. 

At the time I didn‘t know.  He hadn‘t lived with us.  And in checking through his roommate and a couple of his friends yes, he did take General Nutrition protein supplements and beef by-products that could be contaminated could have been in those. 

He also loved his steak.  And he also went to Michigan Tech University, where he had hunter friends who hunted deer in the upper Michigan area.  That is land connected to Wisconsin where there‘s rampant cases of CWD, which is Chronic Wasting Disease in deer and elk.  And they shared the deer with the fraternity brothers there. 

NORVILLE:  So it‘s just a huge mystery.  I mean, it would be like throwing darts to try to know exactly how your son contracted this disease.  The not knowing must be excruciating for you. 

SCHWAN:  Yes.  I mean, definitely you want to know why, how.  I wouldn‘t want anyone else to go through what my son went through and what we went through.  If it‘s because of contaminated beef, there is a way to stop it and it should be stopped. 

NORVILLE:  Yes.  We‘re going to get into the whole beef question in just a moment.  But I want to lay out for our listeners and our viewers just exactly what Creutzfeldt-Jakob Disease is all about. 

There are three ways.  You can get it genetically.  It runs in your family but I gather that it doesn‘t run in your family, Terry. 

SCHWAN:  No.  It was not genetic. 

NORVILLE:  It was not genetic, so they were able to rule that out.  There‘s really two other ways, and we‘ll throw up a graphic so our viewers can see. 

There is sporadic CJD, which is something that happens when it‘s a person like your son, who doesn‘t have any risk factors.  And this literally is a one in a million situation. 

It usually, though, strikes people who are over 55, closer to 60 years of age.  And that‘s 65, 85 percent of the cases.  So your son doesn‘t really fit that mold particularly.  Nor does he fit the mold for the other form of CJD, which is variant CJD, which was first documented in the United Kingdom back in the mid-‘90s. 

There have been no documented cases with American beef in this country and it‘s less than one percent of the cases. 

And again, that is where you are somehow exposed to the variant protein that causes this disease.  And the suspicion in England was that it was through the beef. 

Let‘s get now to Janet.  Janet, you never thought you would become a medical detective, but when your friend, Carrie Mahan, who had worked at the racetrack in Cherry Hill died, you suspected it was just a tragic occurrence and very, very sad. 

SKARBEK:  It was very sad.  Carrie worked for my mom at the Garden State Racetrack in Cherry Hill, New Jersey, and she died in 2000 from CJD at the age of 29.  And we were told it‘s one in a million.  It just happened to be something that she caught and we sort of put it in the back of our minds as a tragedy. 

NORVILLE:  You knew it was the same disease that was Mad Cow Disease in England, but you didn‘t make an association of any sort at that time? 

SKARBEK:  No.  The government told us at this point in time that sporadic was a different strain.  It wasn‘t related to eating tainted beef.  They were telling us it‘s just spontaneous, just one in a million.  That‘s what we knew about then. 

NORVILLE:  And you then quite coincidentally heard about someone who passed away of the same ailment. 

SKARBEK:  Right.  I was reading the local obituaries over the summer, and I came across a woman named Carol Elli (ph).  She died in June.

And in the first paragraph, it said she died of CJD.  And I‘m thinking, oh my gosh, that‘s what Carrie died of.  Second paragraph it said she worked at the Garden State Racetrack.  So all of a sudden I had two employees out of 100 administrative employees dying of something one in a million people are supposed to get. 

NORVILLE:  And two is a coincidence but you believe there was something more? 

SKARBEK:  I didn‘t sleep that night because Carrie was a family friend.  But also, my mom worked with her at the track, they ate together every day. 

NORVILLE:  So you‘re worried about your mom? 

SKARBEK:  Absolutely.  So I went on from there.  I didn‘t sleep that night and the next morning I got up and I thought, “How do I get it out of my head?” 

So I looked up CJD in the local obituaries online, came across the man named John Weber (ph) in the next town over and he had died of CJD.  So I thought, oh, he probably has no relation to the track.  It was a pretty unpopular place.  But I‘ll call anyway, get it out of my mind. 

Called his family.  They said yes, he had a season pass to the track. 

He ate there at least once a week. 

NORVILLE:  That stopped you cold. 

SKARBEK:  That stopped me cold.  That was the moment of, I know there‘s something here. 

And that‘s when I called the CDC and I called the New Jersey Department of Health.  And they said, “Oh, it‘s just coincidence.  You just happened to run into three cases.  Don‘t look for any more, because you‘ll just be wasting your time.” 

And as of today I‘m actually up to 15 confirmed CJD cases with CJD on the death certificate of people who ate at the track between 1988 and 1992.

NORVILLE:  You know that this is all speculative, because while it says CJD on the death certificate, when the investigators have looked further, they don‘t see the connection.

And I want to quote something that was said by—after the autopsies were done.  Quote, “There is no evidence, based on meticulous autopsies, that sporadic CJD is occurring in clusters.  Fears that”—at that time—

“eight New Jersey residents who visited a racetrack in New Jersey and all contracted CJD from having been there are not based on advanced autopsy evidence.”

SKARBEK:  They‘re actually misleading, because half of the people in -

·         from the New Jersey cluster actually were autopsied.  The other half had the spinal taps, which is pretty conclusive for CFD.  And then they rule out other things through clinical studies such as stroke. 

And I‘ve read in neurology and other medical journals that that‘s 96 percent to 98 percent proof positive.  So actually, this is a very strong cluster, and that‘s what I‘m being told by epidemiologists worldwide. 

NORVILLE:  We‘re going to talk about the possibility that there could connection at the racetrack, also the terrible tragedies that both Mr.  Singh and Ms. Schwan are, indeed, enduring. 

And also, the bigger question, is our beef safe in this country?  And steps that are being attempted now to try to assure consumers that indeed it is.  We‘ll continue our discussion after this time out. 

ANNOUNCER:  Still to come, the story of one small beef company in a battle against the cattlemen‘s association.  Why the U.S. government has forbid Creekstone Farms from testing for Mad Cow.  The truth may surprise you when DEBORAH NORVILLE TONIGHT returns.


NORVILLE:  Back now talking with three people whose lives have been so closely affected by CJD, a disease sometimes linked to Mad Cow Disease. 

Janet Skarbek lost her friend to CJD in 2000, and she thinks she‘s found as many as 15 cases linked to her southern New Jersey community. 

Terry Schwan‘s son, Jeff, died of the disease in 2001.  There‘s no proof that either one of them died from ingesting beef, but that‘s certainly the suspicion these two ladies have. 

And Patrick Singh is quite certain that his daughter, who‘s suffering with the disease, contacted it from eating tainted beef when she was in Great Britain.  Charlene was diagnosed in 2002, April of that year.

Let me ask you, Patrick, as you‘ve watched the story of CJD unfold after your daughter became ill, what are your thoughts about the story that Terry has said, the story that Janet has shared?

Very different from your daughter‘s situation but yet linked by this very strange disease that the doctors can‘t say definitively how it does happen. 

SINGH:  Yes.  To be honest with you, you know, I listened to—what I‘m hearing here is horrifying, really. 

NORVILLE:  Horrifying why?

SINGH:  I mean—If the doctors cannot trace this disease or know how we get it or where it‘s coming from then, I mean, how many other people are out there with this disease?

NORVILLE:  That might not know that it lies latent in them. 

SINGH:  Exactly.  Exactly.

NORVILLE:  Was your daughter aware of the significance of her diagnosis at the time it was made?  Did she know what the prognosis was for CJD?

SINGH:  No.  She knew something was wrong with her.  Exactly what that

·         she would ask me, Dad, what is wrong with me?”  We didn‘t know what to tell her.  The doctors didn‘t know what to tell her.  Nobody knew what to say to her.  We didn‘t know ourselves what was going on.  We didn‘t know what CJD was until...

NORVILLE:  And once they diagnosed her correctly, was she so advanced that she was unable to understand the implications of that diagnosis?

SINGH:  No.  She was—she could talk at that time and just, you know, she was just about getting to that point. 

NORVILLE:  It‘s so sad. 

Terry, I know that you‘ve struggled with what might have been done to have prevented your son, Jeff, from contracting this disease.  You mentioned that the CDC had asked you specifically about nutrition powders, protein powders. 

Your son, like most good looking 26-year-olds, probably spent time in the weight room?  Was that why he would take those supplements?

SCHWAN:  He was very much interested in body building, keeping his six pack in shape.  And he did take protein supplements, as well as creotine. 

NORVILLE:  And what did they tell you about those supplements?  What did they say?  We‘re curious to know about this because...

SCHWAN:  Well, they didn‘t say anything to me.  This was an after thought.  I‘m being interviewed by CDC after just finding out that my son is dying of a disease that has no treatment, no cure.  And they‘re asking me if he took any GNC products. 

And later on, I thought why would they ask about a specific brand name?

And then I learned that there can be beef by-products in these protein supplements. 

NORVILLE:  Well, we know that supplements are unregulated, and certainly where there‘s no evidence that the GCN might have caused...


NORVILLE:  ... your son‘s—your son‘s ailment.  And we certainly don‘t want to suggest there is.  It‘s just yet another one of those—those unanswered questions that are out there.

SCHWAN:  Exactly.

NORVILLE:  You also said, when we spoke to you before we came on the air, that when it was apparent that CJD was probably what your son had, they were alarmed.  This man was too young to have a disease that typically presents itself in someone who‘s in their 50‘s or 60‘s.

SCHWAN:  Exactly.  And that‘s because that‘s how they discovered human Mad Cow Disease in the United Kingdom.  And as far as I know, my son is probably the youngest victim of this disease here in the United States.

NORVILLE:  And did he know what he had?

SCHWAN:  No, he did not.

NORVILLE:  It all happened so very quickly.

SCHWAN:  It happened quickly. They thought he had epilepsy.  He was having seizures, non-convulsive seizures. 

And we took him to the hospital July 11.  By July 19 he was put into an induced coma and intubated, and therefore he never spoke again.  And he was drugged most of the time. 

NORVILLE:  I know there are a lot of questions, Terry, that don‘t have answers right now.  There are umpteen government agencies that look at various aspects of this.  I‘m sure you‘ve been consumed with this since your son passed away. 

What would you like to see be done to answer the questions that you have in your own mind and probably allay the fears that many people have about a disease that—about which so little is known?

SCHWAN:  It‘s a lot I‘d like to be done.  Obviously, we need more testing.  The United States tests the smallest percentage amount of beef than any other country.  Japan tests all of its beef before it‘s sent to its consumers.  We test such a minimal percentage it‘s ridiculous. 

I say if you don‘t test you won‘t find.  If you don‘t look, you won‘t see it. 

NORVILLE:  And that‘s something what the two senators in your state, Janet, have just this week said they want to do.  They want to look more closely at the number of deaths that you have uncovered to see if, indeed, there is a connection. 

What would you like to see done, not only at that level but at a larger level?

SKARBEK:  I think at the larger level I‘d love for the CDC and New Jersey Department of Health to seriously look at the New Jersey cluster. 

They like to say, “Well, we only have variant CJD related to eating tainted beef over in the United Kingdom.”  And they say the sporadic CJD here in the U.S. is just spontaneous, one in a million. 

But the CDC and New Jersey Department of Health will never comment on all these studies that prove that sporadic CJD, the kind we have here in the U.S., can also be related to eating tainted beef. 

For example, last year a Doctor Collins (ph) of the Institute of Phrenology (ph) in the U.K. injected Mad Cow beef into the brains of mice.  Some of those mice came down with sporadic CJD, the kind we have here in the United Kingdom—or in the United States. 

NORVILLE:  And if it‘s a one in a million chance of this occurring, then statistically, if 15 people came down with sporadic CJD in this one small community that‘s like 15 million people. 

SKARBEK:  It‘s huge.  And the thing is, it‘s not ending.  A man died just yesterday at Heineman Hospital (ph), a regular track goer that they believe died of CJD. 

There‘s a man dying now in Virginia right now from CJD who used to work at the track.  There‘s another season pass holder who died in March who they think is CJD, and they‘re getting autopsied.  And that‘s not even included in the 15 we‘re talking about at this point in time. 

NORVILLE:  There are a lot of questions, and we‘re not here to make anybody frightened but we‘re here to point out the questions exist.  And in our next blocks, we‘ll try to get some of the answers. 

Janet Skarbek, thank you very much.  We wish you well in your detective work.  We hope you‘ll come back and report to us more. 

Terry Schwan, Patrick Singh, thank you so much for sharing your very difficult stories for us, as well. 

SCHWAN:  Thank you.

SINGH:  You‘re welcome.

NORVILLE:  When we come back, we‘re going to talk about testing beef.  One U.S. beef producer would like to test all of his cattle for Mad Cow, but the government says no.  And some of the cattle industry agrees.  They say your beef is safe and you don‘t need to test every cow to prove it.  Who is right?  That part of the story next.



NORVILLE:  Back now with a look at Mad Cow Disease.  As we‘ve noted, most of the human cases of disease, which is called CJD, are not caused by eating tainted meat.  But some are.

And one small U.S. beef company in Kansas why not test all animals anyway?

Creekstone Farms would like to test all of its cattle, and it‘s invested more than $500,000 in a Mad Cow testing laboratory.  It has hired seven chemists and biologists to operate it, but there‘s a catch.

The U.S. Department of Agriculture won‘t allow it, issuing this statement to Creekstone Farms: “The use of the test as proposed by Creekstone would have implied a consumer safety aspect that is not scientifically warranted.” 

Well, we called the U.S. Department of Agriculture today and they chose not to come on the air and respond.  But they did assure us that not only is American beef totally safe, but they say the USDA is taking aggressive measures to make sure it remains safe. 

Here‘s another part of that same statement: “These measures include an enhanced surveillance system which will test a significant portion of the population of high-risk animals.  As part of this system, USDA recently approved rapid tests for screening these animals to determine the presence of BSE in the cattle herd.  This and the approach are based on recommendations by an international panel of experts who reviewed our systems.  That panel also explicitly that there is no scientific justification for 100 percent testing, because the diseases doesn‘t appear in younger animals.”

Well, joining me now is the chief operating officer of Creekstone Farms, Bill Fielding.  And he‘s with us from Kansas today.

Sir, you think it would be a good idea for everybody, cattlemen and consumers alike, if every single cow that you sold were tested ahead of time. 

BILL FIELDING, CHIEF OPERATING OFFICER, CREEKSTONE FARMS:  Well, we do, especially for the Japanese market. 

We‘ve heard the consumers speak very clearly in Japan that they would like 100 percent testing.  All their beef is tested.  And we‘re responding to that.  And we‘ve gone ahead, built the lab, we think one of the best labs in the country and we absolutely would like to test 100 percent of our beef. 

NORVILLE:  Now, the Japan market is what percentage of your total lump sales? 

FIELDING:  Well, we were exporting before December 23 about 25 percent of our product and Japan was about half of that.  So it was a very important customer, about 10 percent or 12 percent of everything we produced. 

NORVILLE:  Why is the government standing in opposition to this?  From a consumer point of view, it just seems to make sense.  If there is a company that wants to go and spend its own hard-earned cash to put in this expensive equipment because they think it is going to give them an edge in the marketplace, why not let them do it if it‘s not going to damage the consumer in the process? 

FIELDING:  Well, there has been tremendous pressure from the big packers and also from the NCBA, where the concern is that this cost will be borne by the cattlemen and that it will also be very expensive for the big packers to comply with this. 

NORVILLE:  And it‘s really splitting your industry, too.  just in Kansas, there is one cattlemen‘s association that thinks this is not a bad idea, what you would like to do, and another that is sort of standing on the sidelines. 

FIELDING:  Well, there are.  We should say we have got a lot of support from cattlemen around the country.  R-CALF, which is a large organization, I think they have got about 50,000 members.  They‘re very supportive of what we‘re doing. 

The National Farmers Organization, about 250,000 members, they also support what we‘re trying to do.  And we‘ve had calls from many, many producers around the country that agree with us. 

NORVILLE:  Well, let me play devil‘s advocate here.  If there has been no proved case of CJD because of the consumption of American beef, why is it necessary in your opinion to test every cow? 

FIELDING:  Well, at Creekstone, we have a total program.  We only do Angus cattle.  We try to go a step beyond what maybe many others do in our animal handling and our food safety.  We have got one of the best plants in the country. 

And we only sell certified Angus product.  And so, as part of that, we think it‘s important to respond to the customer.  And the objections we just don‘t think make sense.  We think we should go ahead and do the testing.  Really it‘s what the customer is asking for.  It‘s for their comfort level.  We know they‘re concerned about it.  We‘ve been to Japan.  We‘ve talked to consumers.  And there is nothing wrong with being safer than safe. 

And that‘s—we see no downside on doing this.  We think it‘s correct that the USDA should have a minimum standard and we comply with that.  But we think we can go beyond that and prove the science.  We just haven‘t heard any good argument to not prove the science. 

NORVILLE:  Well, let me hear what people on the other—show what people on the other side of the issue are saying. 

Steve Hunt, who is the CEO of Premium Beef—that‘s one of the big

No. 4 companies in the country—says: “The cost to the industry would be

nearly $1 billion a year, a cost that the industry cannot expect consumers

to cover”

And Jan Lyons from the Cattlemen‘s Beef Association says: “Any private industry steps to conduct 100 percent testing can disrupt negotiations ongoing...”



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