| |  | | | | Michaela Marx Wheatley | | Nancye Good edits the documentary "The Mad Cow Investigator" at her parents' home in Langley. | | By MICHAELA MARX WHEATLEY
South Whidbey native Nancye Good has dedicated the last 2 ½ years of her life to telling the story of Janet Skarbek and mad cow disease.
Good, a filmmaker and broadcast journalist, is working on an hour-long documentary for a national television audience that deals with beef safety. The issue is detailed through the personal story of Skarbek, an unexpected muckraker.
“She’s like the Erin Brockovich of mad cow disease,” Good said.
Skarbek — a wife, mother and accountant from New Jersey — turned into a self-proclaimed “Mad Cow Investigator” after one of her family friends died of Creutzfeldt-Jakob disease (CJD). CJD is considered the human form of mad cow disease.
Later Skarbek discovered that more than one person had died of the rare disease in the area.
“She was reading the obituaries,” Good said.
Skarbek found out that all the deaths could be connected to a race track where that family friend had also worked. All had eaten at the race track’s restaurant.
Creutzfeldt-Jakob disease occurs worldwide at an annual rate of about one case per million.
In the United States, CJD deaths among persons younger than 30 years of age are extremely rare, with fewer than five deaths per billion per year. The family friend who died was just 29.
Suddenly, with more than a dozen deaths from Creutzfeldt-Jakob disease in one confined area, Skarbek became even more suspicious.
Independently, Skarbek investigated the deaths that she believed were from a disease cluster related to the race track. As her investigation continued, she kept learning alarming information about meat production and how the government was overseeing the industry.
With her findings, Skarbek went to the New York health department.
“She was dismissed,” Good recalled, adding that specialists insisted there was no proof of a link to the form of Creutzfeldt-Jakob disease that’s connected with mad cow disease.
The disease
There are several types of Creutzfeldt-Jakob disease. “Sporadic CJD” cases are the most common, which often occur for no known reason.
“Familial CJD” results when a person inherited the disease, a rare occurrence that is not considered to be related to mad cow disease.
“New variant Creutzfeldt-Jakob disease” (vCJD), however, is an infectious form of CJD that is related to “mad cow disease.” The agent responsible for mad cow disease is believed to be the same agent responsible for vCJD in humans. This type of CJD was first described in 1996 in the United Kingdom.
Dismissed by the health experts, Skarbek pressed on, with Good and a camera always on her heels.
Skarbek kept finding more people. She connected about 17 deaths to the original cluster and more clusters have since sprung up over the country, Good said. Skarbek continued her quest to find answers.
In the documentary, Skarbek’s viewpoint will be balanced by perspectives of the American beef farmers, scientists studying the disease, and government officials who reassure Americans that the meat supply is safe, Good explained.
Good also visited and interviewed numerous relatives of people who died or are suffering from Creutzfeldt-Jakob disease.
Once symptoms appear, the disorder progresses rapidly and may be confused with other types of dementia – like Alzheimer’s disease.
“It’s been compared to Alzheimer’s on speed,” Good said.
A mystery
It is challenging to tell the story as balanced and unbiased as possible, Good said. But Skarbek, Good said, is an ideal person to bring a story about food safety to a wide national audience.
Skarbek is a working mom, a woman with strong religious faith, but also someone who is progressive in her politics.
“She is a normal mom with incredible courage, and a role model in our time,” Good said.
Skarbek’s personal side is a strong contrast to the mysteries of CJD.
It is difficult to find reliable facts and statistics on the disease in the U.S., Good said, because “nobody is keeping track.”
Only about 23 states are required to report CJD cases, Good said. “It’s a medical mystery.”
Good has already shot many scenes following Skarbek’s investigation, and the filmmaker is still fundraising to finish the film. Eventually, she hopes to broadcast the film on PBS, ideally as part of the independent documentary series called “POV.”
Good has been working as a visual storyteller for more than 10 years. She has produced and directed television programs about the impact of the Iraq war on an Iraqi American, the 2000 presidential inauguration, Xeno-estrogen contaminants in the food chain, and the 1996 Democratic National Convention in Chicago.
Good and her production company, Milky Way Media, are footing the bill for the project, and it’s now in the editing stages.
“I am trying to edit a rough cut. Then I intend to shop it around,” Good said.
Editing, and a month-long vacation away from New York, is what brought her back to her roots on Whidbey Island.
Good came home to visit with her parents, Linda and Leonard Good, and to take advantage of the free babysitting for her 4-year-old son while she works on the movie. Her husband and daughter joined them a few weeks later.
The film
The work on the documentary has made Good more aware of the lack of information available to the public. People on South Whidbey are an exception, she said, as they are much more aware of organic foods and food-related health issues than people anywhere else in the country.
“I’ve done a lot of work for Japanese TV. The Japanese public is very interested in food related topics. They are very knowledgeable about mad cow disease,” Good said. “I thought the American audience should know as well.”
Ultimately, her inspiration for pursuing the project comes from her experience covering under-reported topics. That, and an intense concern about the safety and quality of the food she eats and feeds to her own children.
“It’s such an important topic,” she said.
The work has also made her aware that one day’s big news is quickly forgotten. People were interested in mad cow disease just a few years ago, but then it was upstaged by SARS and the bird flu hysteria, she said.
Skarbek’s contention that not enough is being done to protect the U.S. population from tainted beef was only heightened with the first cow confirmed to be infected with BSE in 2003 in the U.S. The first infected cow was discovered in Washington in December 2003.
Good said it was inspiring to see a quiet mom and wife turn into an activist.
Even so, the current testing policy may be scaled back. The U.S. is currently only testing about 1,000 cows a day and are now considering dropping that number down to 100 tests a day, she said.
“That’s why Japan still bans U.S. beef,” Good added.
Michaela Marx Wheatley can be reached at 221-5300 or mmarx
wheatley@southwhidbeyrecord.com.
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