Dr. Jacqueline Moline is director of the World Trade Center Medical Monitoring and Treatment Program at Mount Sinai School of Medicine. Recently she talked to CBSNews.com about the program's most recent medical findings, its funding challenges and the frustrations of sick 9/11 workers. Below are excerpts of the interview.
CBSNews.com: How many people are currently enrolled in your program?
Dr. Moline: It's about 28,000. That's the World Trade Center Medical Monitoring and Treatment Program. There's also a sister program at the Fire Department of New York. They have about 15,000. Because we each get a funding stream from the feds, their group is active duty fire fighters and retirees as well as EMS workers employed by the Fire Department - so it's about 15,000 firefighters and EMT's. We have 28,000 police officers and firefighters in areas other than FDNY, construction workers, utility workers, volunteers, cleanup workers, anyone who was down there. So all told it's about 43,000 folks who have been screened.
CBSNews.com: What percentage of the program is monitoring versus actual treatment?
Dr. Moline: The funding dictated what happened. Initially the federal funding did not allow us to treat patients. We got philanthropic funding to pay to start a treatment program. But until 2006 we couldn't pay for any medical treatment for World Trade Center-related health problems. All we could do was monitor their health to the frustration of all of us. That was rectified in 2006.
In 2006 when we got federal funding we were able to cover comprehensive care for WTC related conditions. We're not able to cover every medical condition that a responder develops. They have to be on the covered condition list.
CBSNews.com: You recently reported a study that indicated young cops who were 9/11 responders had developed an immune system cancer with. Can you talk about that?
Dr. Moline: We saw an unusual age pattern. Myeloma is typically a disease that is seen in people who are in their 60s, 70s and 80s. It doesn't mean it's never seen in younger folks but in our population size we would have expected to only see one case of myeloma to appear based on the 28,000 that the consortium was following and we saw four cases. It just so happened that they all happened to be in law enforcement... You can't make any causation comments about it but this is not typical, this isn't something we expected and people should be alert to see if there are other disease patterns emerging or unusual clusterings around age or diseases going forward.
CBSNews.com: Last month, there was another study about World Trade Center exposure's link to asthma and PTSD. Can you talk about that?
Dr. Moline: That was from the World Trade Center health registry which is from another program that's through the New York City Department of Health… That's a survey of a wide swath of people who might have been affected by the World Trade Center… They sent out questionnaires to anyone who may have been in the buildings, who were evacuees, who were in lower Manhattan, who worked at the site, who were school children, who were community residents - anyone who might have been in there. 71,000 participated. And then they sent out a second wave of questionnaires and about 40,000 people responded. They found that rates of asthma were elevated compared to the general population or what they would have expected and they also found that the rates of PTSD and depression were higher than the population and that these rates seemed not to necessarily have peaked early on but were occurring later as well… So all of the studies are confirming the same thing.
CBSNews.com: 9/11 health effects are sometimes classified as occurring in three waves. Can you explain?
Dr. Moline: The first wave is the people immediately affected - meaning those people who developed the World Trade Center cough. The second wave is those who have the cough and continued respiratory problems or developed the PTSD in the short term. And then the third wave is the diseases with the longer latency, so things that might take many years to develop whether it's cancer or scarring of the lungs or other diseases.
CBSNews.com: There is universal frustration among responders who say cancer diagnoses have been made yet there's no concrete medical link. Do you sense the frustration?
Dr. Moline: Absolutely. I think we all share the frustration. But as medical doctors and professionals, you have to make sure. The problem is first of all we have to have people that we can access their medical records and know what's happened. They have to be part of a program for us to count them. If someone says 'I have cancer,' unless they're part of my program I cant say that out of my group of 28,000 we have x amount of cancers if they've never even been a part of it… There are a whole bunch of factors in terms of causation... On an individual patient basis, it's often every different from an epidemiological standpoint which is where you would say 'yes this causes that.' And it can be very frustrating because if you're the one patient, you want the answers and we may not have the answers right away. And it may take time for us to say 'well are these disease rates higher than we might expect?'
CBSNews.com: While conducting this program, have you seen any encouraging signs?
Dr. Moline: You can't be fully discouraged if you do this kind of work. I think the thing that constantly astonishes me is the generosity of human sprit and that people are willing to serve - whether it's going into burning buildings or to help people or strangers that they don't know, willing to do this type of work. I think in terms of health effects, I know that we've been able to manage the care of many of these folks - so that were able to treat their asthma, treat their upper respiratory problems, make it so they're still able to work full time and lead a productive life.
CBSNews.com: What are the biggest challenges facing the program?
Dr. Moline: One is really we've had to fight tooth and nail for everything in this program. While over the years there's been a lot of money that the programs have received, just because of the enormity of the number of patients we're following, medical care is expensive as we all know… but it's very difficult to run a program where you don't know how long it's going to last for and you know the need is there and you know the need is going to be there going forward. We can't answer the questions that people want the answers to unless the programs stay in place as they are now. If we start breaking up the programs, we'll never know what happens to folks because there won't be a central repository for this information to go. And it's been very frustrating that we live year to year without long term funding…
At Mount Sinai alone, we've treated over 6,000 folks for World Trade Center-related health problems; we have 4,000 active patients in the physical health program and about 800 in our mental health program. We want to make sure these programs are there for the people that need them.
CBSNews.com: How long do 9/11 workers need to be monitored?
Dr. Moline: We need to follow these people for 30 or 40 years. We need to be able to say 'What are the long term effects of a tremendously toxic mixed exposure?' We don't have good science about mixed exposures. We've got people who were exposed to chemical A or chemical B but not chemical A and B and certainly not chemical A through Z all together - plus the collapse and dust. This is a dust-fume smoke exposure and it was of a magnitude and the number of people exposed was higher than anything (we've seen).