ALS is a progressive disorder that occurs when motor nerve cells in the nervous system (motor neurons located in the brain stem) that control voluntary movement cease functioning and die. Muscle control is lost completely, resulting in paralysis. The average life expectancy for an ALS patient is 2-5 years after diagnosis.
The symptoms are very vague and include muscle weakness, difficulty swallowing, difficulty speaking, tripping, a limp, and inability to grip objects.
Approximately 85 people who once worked or lived at the Air Force base have contracted the rare and fatal disease, and at least 17 of them worked in the same building--Building 171. Most of these patients were civilian employees and many of them have already died. One year ago there were only 16 reported ALS cases, but as word has spread, more and more cases of suspected Kelly-related ALS cases are being reported.
Apparently the base sits on a 12-square-mile plume of contaminated groundwater. Local residents have long suspected that Kelly's environmental contamination is responsible for the elevated rates of cancer and birth defects in the area: ALS is only the most recent development.
The base is closing next month, not because of health concerns, but because the area is being developed into an industrial park of office buildings. Local politicians and the ALS foundation are outraged and have demanded that the Air Force look into the possible correlation. The Air Force has begun a $5 million epidemiological and mortality study to see if there is indeed an ALS cluster at Kelly and to try to figure out what could be causing it.
The Air Force has also acknowledged that it is responsible for the environmental contamination in the area and has promised to clean it up no matter how long it takes.
Joanna Powell is the Good Housekeeping journalist who broke this story nationally, and Lieutenant Colonel Kenneth Cox is the Air Force epidemiologist spearheading the investigation. They spoke with the Early Show about the issue.
Interview With Joanna Powell
You've uncovered some shocking information. How did you come to suspect that there might be a problem at Kelly Air Force Base? How did you become interested in this story?
There were a number of articles about the suspicious number of ALS cases out of Kelly in a local paper [the San Antonio Express-News]. Other than a few local stories, this issue hadn't received any national attention. I contacted the local ALS Association [ALSA] and they firmed up the details for me and put me in touch with some of the patients/victims.
I started working on this story in January. When I stated working on te story there were 66 ALS/Kelly cases and by the time I went to press it was 83. Since then there have been two more cases diagnosed and six more being investigated.
Is it unusual to have so many cases of ALS in one location?
Yes, we think so. We've never heard of anything like it and neither has the ALSA but that is what this epidemiological study has set out to prove or disprove. They say that they will have the results in the fall.
What is the usual ("normal") incidence of ALS?
The national occurrence rate is two per 100,000 people per year. So we get 5,200 new cases each year in the US: That's one new case every 90 minutes. The mortality rate is the same as the incidence rate, so 5,200 people die each year as well. Currently approximately 30,000 people in the US have ALS. (70,000 worldwide)
In what way are these "Kelly" cases atypical?
Besides just the sheer number, they are younger. The usual age for ALS to crop up is 50s or 60 (peak age is 55) and here we are seeing large numbers of cases of patients in their 30s and 40s. According to Carlayne Jackson, the San Antonio neurologist who treats a lot of these patients, this is very unusual.
What do scientists suspect is causing this cluster?
No scientist will say, because they can't prove anything. But behind the scenes they are looking at pollutants, the toxic degreasing solutions and paints that they used on the airplanes at the base. There wasn't a lot of radioactive equipment, not a lot of radar. There were a lot of heavy industrial toxins. A lot of hazardous chemicals were just being dumped.
How can we be sure that these cases are related to a problem at Kelly Air Force Base? Couldn't this just be a coincidence?
We don't know, but to the people involved it doesn't feel like a coincidence. My instinct tells me that a rare disease like this doesn't suddenly become so popular without a common link. The current school of thought in ALS research is that ALS is somehow caused by a combination of genetic predisposition and an environmental trigger. It's a two-hit approach. You need to have both in order to come down with the disease. It could be a variety of factors. That's why this study is so important because even if these cases have nothing to do with Kelly then at least the information gleaned will advance ALS research.
What response has your investigation gotten from the Air Force?
Nothing. In fact, when the ALSA chapter checked last week, they said that Colonel Cox hadn't even read my article yet. He was happy to meet with me (he allocated an hour); he was happy to tell me about the study but he gave me a lot of double talk. To their credit there are some independent people involved in looking at this study.
What steps has the Air Force taken to address this situation?
They've allocated $5 million to this study. The ALSA sent out questionnaires and the Air Force is verifing the information and re-interviewing the still-living victims and their surviving relatives. The Air Force right now is not looking for a cause. They are looking for a cluster. They are just looking to see if the number of people with ALS who worked at Kelly is statistically significant and can be identified as a true cluster. Only after that will they take a closer look at the possible causes, if at all.
What steps can concerned viewers take to ensure that they are not in danger?
There is no need for mass panic because nothing has been proven, but they should be aware of potential toxins that could be affecting their local drinking water. The toxins can come from private industrial plants or military plants. They should be aware of the symptoms.
There are approximately 30,000 people with ALS in the US today. It's a disease that needs to be brought to the nation's attention so that it can get more funding for research. There is some hopeful research being done with treating these patients and prolonging their lives.
Interview With Lieutenant Colonel Kenneth Cox, MD
Cox is chief of risk assessment at Brooks Air Force Base in San Antonio, Texas and an epidemiologist in the United States Air Force. The division that he works for is called the Air Force Institute for Environment, Safety, and Occupational Health Risk Analysis (AFIERA).
Did you think that a list of 31 ALS patients was odd?
No, that's what we do: We get lists from the community about health concerns, but this was the first time that someone had raised the issue of ALS in an occupational setting. The Air Force had never done a study involving ALS before.
What was your response to receiving the list?
There is a set procedure. It goes into an epidemiological investigation. We began by validating the information of the list--did they all really have ALS; did they all work at Kelly--and then comparing the normal incidence rate of ALS with an abnormal ne. We use statistical analysis to figure out whether there is a problem or not and to find a common factor.
What are you currently doing to address the situation?
There are a bunch of different efforts going on at once. The community has a number of different heath concerns in the area (high rates of liver cancer, diabetes, heart disease) so the local public health department is looking into those issues as well. There are several studies being conducted. One is called a 'case series' where we interview the patients and their families. We are also preparing to do a 'mortality study' in which we study the causes of death of all the workers in the community over the past 20 years. Those two studies are being funded by the Air Force but we are collaborating on them with the City of San Antonio Health Department.
The Agency for Toxic Substances and Disease Registry [ATSDR], a federal branch of the CDC [Centers for Disease Control and Prevention], i also involved. They are doing a national review of ALS and comparing it with what they find here in the Bexar County San Antonio area. There is also a clinical outreach program being run by the San Antonio Heath Department to screen potential patients who may not have access to healthcare.
What was the impetus for all these sudden studies?
The impetus for all this was that once the local media ran the stories, the ALS association received more and more phone calls from Kelly workers with ALS. The mortality study had been contemplated since 1988, because of other community health concerns, but now we have broadened the scope of that study to include ALS.
How far along are you with the ALS case studies?
The ALS association has been finding more and more cases, but lately the number of new cases has been dwindling; so we think we are almost done with the collection phase. Then we will analyze the data to see if these ALS patients shared common work environment, hobbies, or medical conditions to see if we can identify a risk factor. Once we isolate a 'risk factor,' then we can use that information to prevent future cases. Another thing we will look at is whether this incidence of ALS is normal or not.
This is an opportunity to learn about ALS because a grouping of a rare event like ALS is rare, so it gives us a chance to really study the potential causes of ALS.
Have other ALS cluster studies been conducted?
Yes, there have been ALS clusters in other countries and communities in the United States. There has never been any consistent proof of any causes or triggers of ALS, environmental or otherwise. Some studies find a cause but then that result doesn't hold true in another study. We also think that ALS has a latent period of between 10-30 years, so it is harder to figure out what triggers it and when.
Do you know whether you are dealing with an ALS cluster here or not?
We don't know yet because we haven't finished the study. It is a comparison of rates; you compare the standard rate with the rate that you have in the area. If you have more than the normal spread, then it's cluster. It also has to be a statistically significant number of more cases. It can't just be two more than normal. We have to separate what happens by chance from what happens by cause.
If it turns out that there is a problem, isn't the Air Force directly responsible?
If there is problem we will need to address it. The Air Force has always taken care of our people. We have disability claims for people injured as part of their duties.
What steps can concerned viewers take to ensure their safety?
Viewers should use proven preventative medical techniques like good nutrition and exercise. Also, people should not do things that we have already proven hurt people, like doing drugs or smoking.
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