A Decade of Hope (9 page)

We realized it was not the Scientologists' philosophy to provide their alternative therapy (sauna etc.) alongside standard medical treatment (respiratory medications etc.). Despite what these alternative therapists said, most patients told us they were having them stop all of their standard medications cold turkey. In out minds it then became an experiment, and we could not really participate in that. The same is true of the people who wanted to talk to us about nutritional therapy or other treatment. None of these things in and of themselves is bad, but in a disaster situation you cannot have a million different paths to wellness. You can have a few, but you can't have a million. There's just too much to do. Everything we do takes effort. Everything takes time. Everything matters. Nothing can exist without impacting on another service, because the effort is so intense. And so we made the decision to concentrate on standard therapies.

 

One of the things that we at the Bureau of Health Services didn't actively involve ourselves with was the site-safety issues. The Fire Department did an amazing job with on-site safety. If you ignore for the moment long-term illnesses and the psychological consequences of 9/11, only one person was hurt [in the rescue and recovery operations], with a broken leg, and that's it. That's pretty amazing for such a noisy, dirty, and difficult steel- and cement-strewn area. An immense amount of safety training and appropriate decisions were mandated by Chief Dan Nigro and the FDNY in charge of site control.

What I think we neglected, though, was to take a more active role in respiratory and psychological safety than we did. And I'll tell you why this occurred first—not as an excuse but as a learning experience. Both Dr. Kelly and myself are not operations people. We take pride in the fact that we don't run around in uniforms, we don't command the site, we don't act as fire chiefs. Firefighters would have very little respect for us if we did that.

But respiratory and mental health safety protection for the workers at Ground Zero should have also been issues we weighed in on.

However, we're not industrial hygienists or environmental specialists, and initially we didn't understand the nature of the exposure. We knew the number-one objective at the time was rescue, and after the rescue effort was no longer realistic, the goal changed to recovery, to find the victims' remains. Respiratory protection, mental health protection were, and should have been, secondary. If we were there playing Mommy and Daddy, we would have accomplished nothing. So in the first two weeks we were suffering our own trauma. We were planning and advocating for a monitoring and treatment program, and we knew that if we missed that boat, we would never be able to get back on it.

As physicians, if there is, God forbid, a next time, we will advocate strenuously for a more measured [on-site] approach to respiratory protection and for psychological protection specifically. If there's any question, there should be full respiratory protection. That would mean at a very minimum an N95 medical respirator [disposable mask especially efficient for filtering particulate contaminants] rather than a surgical mask, more likely a T100 respirator, the half-face respirators that were given out there two weeks later. And, in a very untenable situation, SCBA, which are masks with air tanks worn on the back. We will advocate not only for the appropriate respirators, but for creating a program in which the masks are worn or the firefighters are ordered to leave the scene. Mandatory is what was missing.

From a mental health perspective, if there is a next time, I think we also have to do a better job at reducing the number of days that any given individual participates [in rescue and recovery efforts]. And that is a very difficult thing to do, because everyone wants to help. And everyone has a family member or a loved one or just a victim that he feels he has to find.

Operationally, it's probably a better management approach to detail workers for a week or a month at a time, but I don't know whether thirty days is too much or two days is too much. There is a lot of variability from one individual to the next, but we have got to truncate exposure in some way. It's a huge Fire Department, and I thought our studies would be able to provide us with magic threshold numbers, but it hasn't happened to date. My instinct and opinion is that we have to rotate people out of these questionable environments on a very frequent basis. And we need shorter periods, to decrease the amount of stress that has to be absorbed.

 

The Fire Department did nothing wrong. We had never experienced anything like this before. Operational issues correctly took precedence, so don't take into account just one end of my thinking and not the other end. I realize that these are complex issues. I realize why we don't give every firefighter a T100 respirator as part of their standard outfit, because it is inadequate for operating in a fire—a firefighter using it would die of carbon monoxide intoxication. The right mask for a disaster like 9/11 is the wrong mask for everyday firefighting exposures.

I have never spent much time thinking about how much should people be paid for a disability or how much should people's families be paid for the loss of their loved one. What I do know is that, no matter what the decision you make is, you're going to be wrong to someone. Do you make your decision solely on the medical consequences? I explain to firefighters who are going through the disability pension system, which I'm actively involved in, that disability is not based on illness or injury. Every firefighter thinks it is, but that's not the case: It's based on the functional impact of an illness or injury. It's based on whether it is severe enough to prevent you from being a full-duty firefighter. For civilian disabilities a much greater threshold of incapacity is needed to prevent you from doing just regular work—if everything is working correctly, you have to have a very severe injury or illness. One could, if you were the judge, base the decision solely on how that injury or illness impacts you in terms of your function and subsequent life. Or, if you're dead, how it impacts your family.

If you're looking to compensate people based on the loss of the soul, everyone is equal. If you're looking to compensate people on the basis that normal insurance policies do, the rich dead person gets more than the poor dead person. We find that dissatisfying. Likewise, do you put a value judgment on adding dollars because you are a first responder versus a happenstance survivor? In terms of the medical consequence there is no difference. Someone who develops severe asthma who was a first responder and who can't work is no different than a happenstance survivor who develops severe asthma and also can't work. Yet everyone else was running out of that building when the first responders were running in, and there should be a value judgment to that—in terms of how we value human beings' decisions, their lives, and the need to value them—[for] the next time [when] people in emergency response make the same decisions. So, if I were the judge, there would be an extra value for that. Many times there isn't, and the decision is based purely on: How much did you make and how bad is your injury?

 

Luckily I was able to recover, for the most part, and I felt that I had answered the questions that I asked when I was caught in the collapse, which were,
Why am I down here? Why am I dying when I helped no one?
There is an answer to that question: I was down there because I was supposed to be. But from a big-picture plan, I was down there to experience this so that I would have firsthand knowledge of what my own patients and others were experiencing, and so that I could see what was beneficial to me and what might be beneficial to them. After all, it was all about taking care of the patients and taking care of the program. Working with someone like Dr. Kelly is very important, for she is an anchor to taking care of the individual. I know the importance of this program for each person who is hurt.

It's not just about our ability to provide the answers to questions but more about being able to provide the health lifeline to people who need it. This program exists because of the great work it does, the support it has from labor, management, and every patient, the moral imperative, and the scientific findings. But it exists only if politics allows it to, and that requires a huge effort. For me the program is an entity, almost like a human being, and it's synergistic—patients need the program and the program needs the patients. If all you're doing is taking care of the program, you're not taking care of the patients. If all you're doing is taking care of the patients, the program is not going to survive. Dr. Kelly is really the compass for maintaining the balance needed to do both.

I can be with every patient on a schedule, and I think the firefighters really appreciate the fact that when they enter my office—and I'm certain that's true of all of our World Trade Center treating doctors—they are in isolation. Time stops; their need is what's important. I see patients on Sunday, and during the week I am focused on the program. I don't set up my day so patients can come during the week, because I want to maintain my focus on the program. I have to compartmentalize.

There's a third component, which is the analytic process. Early on, in terms of the political aspect of getting funding, we focused on just the Fire Department program, but then we developed cooperative relationships throughout the city, with HHC [the New York City Health and Hospitals Corporation] at Bellevue Hospital, what they call the World Trade Center Environmental Health Center, and the Mount Sinai Consortium, which is not just Mount Sinai but several other hospitals throughout the metropolitan area. Mayor [Michael] Bloomberg has really taken this on as one of the top five funding initiatives for the city, in terms of federal dollars. He has provided city dollars as well. And we've had to now integrate ourselves into the overall city effort. It is different but has great strengths associated with it. It makes certain that people have the necessary tests, that the bills are paid, that there are enough satellites in different areas of the metropolitan area to serve their needs, that programmatic issues are addressed, that there's a CAT scan program, that there are assessments for the needs for specific types of mental health programs, and that priorities are studied—because there isn't an infinite amount of money or time. You have to prioritize people and programming. And then we have to take all of this information and prioritize what we're going to be able to analyze, because we've talked a lot about how the results will drive not only this program but every other program. Now we're considered the cream of the overall program, because we've had all the prior 9/11 data that we've been able to integrate to objectify the problems.

We were the first to publish in the
New England Journal of Medicine
that a World Trade Center cough exists, and that it's a syndrome. We were the first to publish a seven-year 9/11 follow-up study, again in the
New England Journal of Medicine
, showing the effect on pulmonary function. We were the first to show sarcoidosis, a scarring of the lungs and a chronic inflammatory process, that luckily for most people does not usually cause debilitating lung function. But for a few it can, and for a few it can even be life threatening. It's not easy to get articles published in the
New England Journal of Medicine
and the various medical journals that we have published the results of our studies in, but they realized we were not here just to legitimize the program but also to provide credibility, and to use this data to plan for the future, which are all very noble aspects. So it's only by showing these things that you can translate a program from the right and charitable thing to do to the necessary thing to do. It's the necessary things we do that, in a right world, are sustainable. We are also here to do something that only the Fire Department realized was necessary, and we're successful on the analytic side, because when firefighters come in to be seen they ask two questions. They asked these questions before 9/11 and at every bad fire they fight.

The first question is: How am I doing? They're human beings. They want to know how they are doing. The second question is: How are my buddies doing? How is everybody else doing? Your average civilian 9/11 patients exist in isolation. They're human, and they care about all of society, I'm certain, but when they see their doctor they ask, How am I doing? That is not true for the firefighters. They want a serious answer about their coworkers. They do not want the wholesale illness of the telephone fire repeated. So when they come in and, after you answer how they are doing, they ask, How are my buddies doing? They realize you can't spend five hours with them discussing it, but they want a serious answer. And that is what has made our analytic program a requirement, and what has made it successful, because we realized that the monitoring and treatment program and the analytic program were not separate programs but the same program. We had that vision not on day one, not on day two, but on day minus-one, pre-9/11, a vision shared by everyone at FDNY. All firefighters had the same questions, and they meant them, which is why six years into the program we published a book that we sent out to every firefighter to say, Listen, we care, and here is a book for you. And we're going to update that book. That is why this program succeeds.

 

My goal for myself is to be a physician until the day I die. I mentioned how my dad had seriously advised me to work in a profession where you could control your destiny. And I realize the importance of that now. My destiny, if I can control it, and as long as my brain is functional, is that I want to work until the day I die. There's nothing better, there's no greater purpose on earth, than being able to help people. Firefighters help people by running into a building, I help people by seeing patients. I'm not alone in that. We all help people in different ways. This is just my way.