Fw: 39 AFB workers have ALS

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ALS or whats behind door # 3 ?

39 workers now have ALS

By Foy Express-News Medical Writer

Week by week, the list grows.

Larry Mortola listens to fellow ALS support group members during a monthly meeting at the Ecumenical Center for Religion and Health in San . Larry, who carries a whistle to summon Rosemarie for help, uses his whistle to officially call the meeting to an end. Six years after a pivotal meeting occurred between two other former AFB employees with ALS, the number of known one-time workers with the killer disease has grown to 39.Photo by J. Avila/Express-News

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Special Section: AFB Environmental Legacy A little more than a month ago, the number of current or former AFB workers diagnosed with a rare neuromuscular disease was 16. By Wednesday, that number had grown to 39. Since the San Express-News first reported a suspected link between contamination at and the number of amyotrophic lateral sclerosis (ALS) cases, phone calls and e-mails have poured in to the local ALS Association from throughout the nation, and from as far away as Italy. The not-for-profit group has followed up those contacts with questionnaires about work-related duties and medical history, and information from the returned surveys has helped to more than double the number of names on its list of former or current workers with ALS. "It's just amazing," Peggy McKinley, of the local ALS Association, said Wednesday. "It's turning out to be more than we ever thought possible." Normally, there are one to two new ALS cases per 100,000 population each year in the United States. That there are 39 people — living or deceased — diagnosed with the rare, fatal disease who have ties to is highly unlikely, she said. The group's concerns over a possible link between the base and the high number of cases of ALS, also known as Lou Gehrig's disease, were highlighted in October as part of an Express-News special investigation into 's environmental legacy. The investigation also prompted the Air Force to launch a study into the ALS situation. Now, researchers and the ALS Association are working together to try and locate possible additional ALS patients who may have worked at — even if those persons have moved from the South Texas area. And there is a good possibility the list could grow even longer soon. In addition to the 39 cases confirmed by the ALS Association, there are another 16 questionnaires that have been sent to former workers with ALS that have not been returned. "So it could be as many as 55," said Klenke, director of the local association. "We're just waiting to hear from them. You know, this whole thing is going to be based on numbers." Those numbers will be used in a complex set of epidemiological methods to determine whether the ALS cases truly reflect a higher-than-expected prevalence of the disease. Lt. Col. is the epidemiologist overseeing the ALS project at the Air Force Institute for Environmental Safety and Occupational Health Analysis, located at . He compared the concern over whether there is a true cluster of ALS cases connected with to a fire alarm. "You know, sometimes fire alarms go off, but they don't indicate a burning fire," he said, adding that the Air Force was "concerned enough" to look into the issue. A preliminary calculation by researchers has shown that if between 15 and 43 workers contracted ALS during the last 20 years, it would not be out of the ordinary, said. However, said he was surprised that the average age of the ALS patients was about 45. That's relatively young for an ALS diagnosis, he said. researchers will examine information generated by the ALS Association's survey, as well as work independently to gather additional details about each patient, said. They also will look into medical records and death rates as part of the project, he said. Since there is no known cause of ALS, it is difficult to try and tie it to any one culprit, whether it is biological or environmental, said. The fatal disease damages the nervous system, eventually robbing the body of all muscle control, including swallowing and breathing. In October, the ALS Association had evidence that at least five former workers with the disease had worked at one time in Building No. 171. That number has grown to at least 10 as the number of suspected cases has increased, McKinley said. The building was used mostly for administrative purposes, and housed more than 2,500 workers at one time, said Adam Antwine, chief of environmental programs at the Air Force Base Conversion Agency, which is overseeing the transfer from the military for private economic development. Most of the workers, however, had been in the mechanical fields before they were promoted to the administrative positions housed in the building, he said. In light of the controversy surrounding the building, the agency plans to conduct an air-monitoring project there. Its current tenant is a division of Lockheed , Antwine said. "There are obvious concerns with this potential cluster that there may be some environmental concerns still there," he said. But downplayed the possibility there may be a connection between the building and ALS. "I'd work in that building and I wouldn't be concerned," he said. Klenke stressed that the ALS patients and their families involved in the effort to bring attention to the possible link between and ALS are pleased that the Air Force is taking their suspicions seriously. "This isn't about pointing a finger or looking at a lawsuit or rabble-rousing," she said. "I'm just glad that at least the message is out. Now, we have the ears of someone who will listen." For more information about the ALS/ study, call the ALS Association at (210) 733-5204.

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12/06/2000