Janet Skarbek’s life was forever altered when she read the obituary of an acquaintance in June 2003.
A 56-year-old woman who had worked with Skarbek’s mother at the Garden State Park racetrack in Cherry Hill had died of Creutzfeldt-Jakob brain disease, the human version of mad cow disease. Barely three years earlier, a 29-year-old accountant at the track had died of the same rare, always fatal disease.
Skarbek wondered: How could two of just 100 administrative employees at the track be felled by a neurological disease health officials say kills just one in a million people each year, usually after age 60?
Almost overnight, Skarbek changed from suburban mother of two, tax manager and Sunday school teacher into an Erin Brockovich-like crusader fighting to keep mad cow disease from spreading through the U.S. food supply.
Skarbek, 37, began inspecting obituaries and over time identified 18 people she believes died of CJD from 1993 to 2004 and had eaten regularly at the same restaurant at the now-closed racetrack. She also spotted possible clusters elsewhere or learned of them from loved ones of people whose deaths were classified as sporadic CJD.
Sporadic, or naturally occurring, cases of CJD have no known cause but are not due to eating mad cow-tainted beef — which has killed at least 180 people in the United Kingdom and continental Europe since the 1990s. Beef-related cases are classified as variant CJD.
Skarbek believes some U.S. deaths should have been classified as variant CJD.
So Skarbek, who “temporarily” stopped working almost two years ago to focus on the issue, devotes much of her time to researching CJD and to speaking to “whoever will listen.”
Dr. Ermias Belay, an epidemiologist at the Centers for Disease Control and Prevention said fewer than 10 suspected U.S. clusters have been reported and none have panned out. In each case, testing showed some cases weren’t CJD or some patients had lived elsewhere for years, so the number of verified cases was within statistical norms.
Belay added that there have been no U.S. mad cow victims except for a woman born and raised in the United Kingdom who died in Florida last year.
Dr. Eddy Bresnitz, New Jersey’s state epidemiologist, said his investigation last year of the suspected racetrack cluster found three people died of causes other than CJD. Bresnitz ruled the deaths Skarbek linked to the track did not constitute a cluster, or unexpectedly high number of cases, because the track drew millions of visitors from a wide area.