Two Women Against Mad Cow Disease

November 1, 2001 Good Housekeeping by Lisa Belkin

So far, the deadly disease has not surfaced here. But if there were a case, would it be detected in time to stop the spread? Two women on the front lines say, DON'T STEAK YOUR LIFE ON IT!

By Lisa Belkin

Mad cow disease-that mysterious killer that is neither virus nor bacteria-hops and jumps its way across Europe, decimating herds in Britain, France, Ireland, Italy, Belgium, Portugal, Switzerland, Germany, and Spain. As it travels, we in America sit and wait. Beneath our jitters lies a wavering layer of trust: It can't happen here. Can it? Scientists are on top of this. Aren't they? Our superior health-care and agricultural-screening systems will protect us. Right?

Cele Sardo and Mayra Lichter aren't so sure. Sardo is a 64-year-old former secretary from Pembroke Pines, Florida. Lichter, 44, is a former federal prosecutor from nearby Miami. Neither has any scientific background, certainly nothing that would qualify her as an expert in mad cow disease. Neither has ever met anyone who has the human form of the disease; in fact, mad cow isn't even their main interest as activists. But because each lost a beloved family member to a related disease, Sardo and Lichter have done enough research to qualify, in a very uncrowded field, as experts in mad cow. And as such, they have discovered that although not one case of infection by mad cow has been reported in the United States, official statistics may be wrong-and the data they've developed, in their amateur way, may now be scientists' best route to the truth.

Their remarkable tale began on a day in 1989, when Sardo's 56-year-old husband, Joseph, a data processing administrator, started feeling dizzy. By the next morning he was having trouble articulating sentences, and by that afternoon, in the doctor's office, he could not name the vice president of the United States or count backward from seven. At dinnertime, he inexplicably left the table, retrieved his work ID card from the bedroom, pinned it to his shirt, then sat back down to eat. Three weeks later, he began having seizures. His wife could see that she was losing him, but all the test results came back negative-no evidence of a stroke or brain tumor, no evidence of anything. Forty-seven days after his first symptoms, Joe Sardo was dead.

Three years later, Lichter's 74-year-old father, an international banker, started acting equally odd. He'd forget which highway exit to take when driving home, or he'd make a wrong turn on his familiar daily walk. Soon he couldn't eat, walk, or use his hands. Once a lawyer and a judge in Cuba, where he was born, he now hallucinated that roaches were crawling all over his body. On February 14, 1993, three months after the first symptoms appeared, Felix H. Reyler wished his wife a happy Valentine's Day. That was the last thing she or his daughter heard him say. He died two weeks later.

Mayra Lichter, left, and Cele Sardo operate a vital research network out of their Florida kitchens. (picture...TSS)


Both Felix Reyler and Joe Sardo were destroyed by Crentzfeldt-Jakob disease (CJD), a rare disease that shuts down the brain, bit by bit, over several months, until the victim dies. The course of CJD is frightening, with patients suffering a bizarre spectrum of symptoms. Some see everything upside down; others imagine bugs everywhere.

When Cele Sardo and Mayra Lichter first collided with CJD, they had never heard of the disease, nor had many of the doctors they consulted. Now everyone has heard of it, though not necessarily by that name. A similar disease in cattle is called bovine spongiform encephalopathy-in other words, mad cow disease, which can be transmitted to humans via infected meat. The human form is known as variant CJD (vCJD).

Like so many families transformed by their brush with a disease, Sardo and Lichter have gone from knowing nothing to knowing more than they would like. Brought together by a doctor after the deaths of their loved ones, they began to research CJD in the United States. In all but a handful of states, they learned, doctors are not required to report a CJD death to the authorities, so no one can be sure how many cases exist nationwide. The Centers for Disease Control and Prevention (CDC) has equally imperfect data-it uses death certificates to calculate annual numbers for CJD but doesn't confirm the findings by looking at brain-tissue slides. The only place where that happens is at the National Prion Disease Pathology Surveillance Center at Case Western Reserve University, in Cleveland-a "center'' that, despite its impressive name, consists of only one scientist and three technicians. Their job is to comb the CJD death files looking for possible cases of vCJD. This is the only government-funded surveillance center tracking vCJD in the United States today.

Sardo and Lichter say that the four-person Case Western team is not enough. If someone in this country dies of vCJD, they say, it's important that the case be reported as such, and quickly, so that public health officials can find the source of the infected meat and thus prevent more deaths-deaths that would be just as macabre and agonizing as those of Joe Sardo and Felix Reyler. To that end, Sardo and Lichter have set out to do surveillance of their own, to create another layer of defense by compiling data that the government may have missed. They are just two women with a computer, and a determination to keep others from dying as their relatives did-a most American form of grassroots activism.

"No, we don't know what we're doing," Sardo says. "But we can't let that stop us."


On a rainy, muggy afternoon, Cele Sardo ushers me into her cheerful kitchen in Pembroke Pines, an inland development that is one of the fastest-growing communities in Florida. After losing one home to Hurricane Andrew in 1992, Sardo chose this spot for its distance from the ocean. Now she says, "Surviving Andrew was a piece of cake compared with watching Joe die from CJD."

As we take a seat at her dining room table, she says, "Welcome to the 'institute.'" Lichter, who has driven from Miami to join us, adds with a laugh, "This is our Pembroke Pines branch. My dining room is the Miami branch."

More seriously, Lichter explains why she has become a CJD activist. "My father was always the first person organizing, the first to form a community," she says. "So when I asked myself what would be the best way to honor him, I decided to do what he would have done.

"It was also therapeutic for us," she adds, speaking of her family. "We couldn't do anything for him while he was sick. At least now we can do something in his honor."

Sardo is outgoing and bubbly, Lichter more reserved and businesslike. Opposites joined by a cause-offering advice and information to families of new CJD patients-they have become close friends. Their first step, when they decided to form the Creutzfeldt-Jakob Disease Foundation in 1993, was to educate themselves, which at the time was surprisingly easy to do because so little was known about CJD.

Most experts, they learned, believe that the disease is not caused by a virus or bacteria and is not a rapidly growing mutation, like cancer. Medically, it is a category unto itself, and it begins with a protein known as a cellular prion. In one person per million-yes, those are the odds-the prions become abnormal, eventually eating spongy holes in the brain that destroy the person's ability to function.

There are two different forms of CJD: classic (which can arise spontaneously, be genetically transmitted, or be contracted via infection) andvariant (which is caused by eating diseased meat or cattle products). One big difference between the classic and variant forms is the age of the victims. Classic typically strikes those in their 50s or older (like Sardo and Reyler, who suffered from the spontaneous form) and kills within weeks or months; vCJD afflicts younger people-the median age is 28-who may linger for months or even years before dying.

Once Sardo and Lichter mastered the facts, their next job was telling families that the foundation existed, which they did by leaving its name with umbrella groups like the National Organization for Rare Disorders. For three years, the women fielded a handful of calls and letters each month from spouses and children of newly diagnosed patients, all seeking help and information. Then in 1996, Lichter says, "all hell broke loose." That was the year that they launched their Web site,, and coincidentally also the year that mad cow disease burst onto the world stage. Suddenly their fledgling site was flooded with questions, not just from a few families of CJD victims, but from anyone on the Internet who was worried about mad cow, at an average of 150 e-mails per month.

In other words, mad cow has put CJD on the map, a development the two women hope will someday bring about a cure. "It's horrible to know that something as devastating as mad cow had to happen in order for the cause of CJD to get 'all this attention," Sardo says. Lichter agrees: "We want there to be more research. But it's tragic that we'll get it because people elsewhere in the world are dying."


If research is the key, however, there isn't enough of it. The only official vCJD surveillance center in the United States is the one at Case Western, headed by Pierluigi Gambetti, M.D., a pioneer in prion research. The center is funded in part by the federal government, via the CDC; the rest of its modest budget comes from private grants and donations.

Experts believe that so for there has not been one case of vCJD in the United States, but the only way to know for certain, says Dr. Gambetti, is to biopsy the brain of every patient believed to have died of CJD, to be sure that none succumbed to the variant form. Currently, Dr. Gambetti sees brain tissue slides from some CJD victims-but not every victim is autopsied. The problem is obvious: If Dr. Gambetti doesn't receive brain slides from enough CJD cases, he can't be sure that none of the victims was infected with vCJD. So there is only one thing that Dr. Gambetti will say for certain-he isn't seeing enough slides.

These are the numbers: CJD, in both of its forms, affects about one person per million, and the population of the United States is 281 million. That means there should be about 281 cases in this country every year. But last year Dr. Gambetti's lab confirmed only 11l cases of prion disease, or about 40 percent of the expected total. In the four years since the center was founded, he says, its team has investigated only 26 percent of its statistically predicted caseload.

This means that it is impossible for him to tell whether mad cow disease has yet been transmitted to humans in the United States. "How do I know that in the sixty percent that I didn't see last year that there was no case of vCJD?" he asks. "How can 1 tell the American people that vCJD has not been found?"

Lawrence Schonberger, M.D., a medical epidemiologist in the CJD surveillance area of the CDC, is more reassuring. His office, he says, records between 250 and 300 reports of CJD per year, exactly the number that would be statistically predicted. Some of these cases are reported by physicians, says Dr. Schonberger, but most are identified by a CDC review of death certificates. These are "an effective tool in the case of CJD," he says, "because people don't recover, and if people don't recover, every case is going to result in a death certificate."

The key to the death certificate-screening method is the age of the deceased. Because classic CJD affects older patients, alarm bells go off if a certificate shows a young patient dying of that form. In fact, that's exactly what happened last year when a 3l-year-old medical student died of CJD.

Because she was so young, authorities briefly suspected that she had vCJD. But an examination of the biopsy slides showed that this was not the case.

Sardo does not share the CDC's faith in the death certificate method. Her reason: Death certificates are often wrong. Several months ago she came across her own husband's certificate and noticed something for the first time. His cause of death was listed not as CJD but as pneumonia complicated by heart disease. She filled out a lot of paperwork and received a corrected certificate, but, she says, "If I hadn't pursued this, Joe's death never would have been attributed to CJD." How many other such deaths are listed as pneumonia related and so never come under the microscope?

Dr. Gambetti is also troubled by the CDC's reliance on paperwork rather than the lab work he feels is essential. "Death certificates are helpful, but inadequate to track down the type of prion disease we are looking for," he says. "We have cases here where we're absolutely convinced that the patient had a prion disease, but he did not, and also the other way around. You need to confirm the diagnosis with pathology."

Dr. Schonberger agrees that the more biopsy slides Dr. Gambetti can examine, the better. And both men know what it will take to eliminate the obstacles between Dr. Gambetti and his ideal number of slides. "What do we need more of?" the doctor asks. "In a word: money."

Money would allow the center to reimburse families for having an autopsy performed. Money would also help establish a network of institutions willing to perform these autopsies in the first place (some are reluctant, because dealing with the remains of a CJD victim requires that the doctor take additional precautions).

Compared to other countries, however, the United States is funding this work at a low level. Britain, for example, spends $2,329,000 per year screening cases of CJD for mad cow. Even Canada, which has a population of 31 million, spends $666,667. At that rate, the United States, with a population of 281 million, would spend $6 million. Right now, however, Dr. Gambetti's center has a budget of only $100,000, with Congress recently voting an increase of $140,000.

Confounded by the politics, Sardo and Lichter are trying to remain focused on their original goal: supporting CJD families and researchers. They now believe that thorough surveillance of the disease is key to their task, and they are dumbstruck to realize that they have information the government does not. Families of CJD victims often come to them rather than to the CDC or Dr. Gambetti. Their tiny, kitchen-based foundation-the research equivalent of a PTA bake sale-is a depot for data that other groups may not have.

E a r l i e r this year the two women began marshaling that data. One CJD victim's daughter has volunteered to track down every case that came through the foundation over the past two years. Once they have a list of names and cases, they'll turn them over to Dr. Gambetti, who will cross-reference them with the names he already has, then investigate all the new cases and try to get a tissue sample for each. It is slow, boring work, says Sardo, but worth the effort: If Dr. Gambetti finds vCJD in one of those samples, "we could make a real difference," Sardo says. "The sooner a case is detected, the better the chances of stopping an epidemic."

On the day that I visit the "institute,'' Sardo serves sliced turkey and fruit salad for lunch-no beef. "When we came to CJD, it was just a disease," says Sardo. "Now it's a global political issue."

Recently, she and Lichter received a letter from a Kuwaiti scientist who said that he wanted to come to Florida and learn more about CJD at their "esteemed institute." Such descriptions both amuse and terrify them.

"It's a big world out there," says Lichter, "and just the two of us sitting here."

Can you really call that a fair fight?

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