Health & Medicine / Health Policy

There are 46,000 children who attend school in lower Manhattan. Six months after the attacks, you testified before Congress that the indoor environment at the schools was safe. Do you think this all-clear signal might have been premature? Have any follow-up studies been done on these kids?
In retrospect, there was more indoor contamination that we initially realized. In some cases, windows were blown out and the contamination was painfully obvious. But it took a while to realize that there were a number of other buildings that didn't react swiftly enough to close their air intakes, so the contaminated dust got taken up with the air handling systems.

The City of New York, with support from CDC, has set-up a registry for people of all ages who live or work in lower Manhattan. They've collected detailed medical information on 71,000 people, whom they are continuing to follow.

That's our best hope of seeing what's happened to the children.

So we could possibly see illnesses 20 or 30 years hence?
We could and it could be many decades from now. Children have many more years in future life than we adults, and if they are exposed to asbestos, for example, they've got seven or eight decades to manifest any disease.

The government initially was reluctant to recognize that people were damaged from exposure to this caustic dust. What do you think finally turned the tide?

The truth. It just became painfully obvious within a couple of months that people were damaged, and the press was filled with stories about the World Trade Center cough. The critical event was the David Prezant paper in the New England Journal of Medicine [September, 2002] on the World Trade Center cough. David Prezant heads the medical follow-up program at the fire department. It became very difficult after that for people to say no harm was done.

The Bush Administration is trying to cut off access to this kind of critical information.
Yes. The EPA has shut some of their libraries and they've pulled stuff off their Web site. An interesting way in which this plays out relative to the World Trade Center is that there have been senior officials within the Department of Health and Human Services who've seriously proposed shutting down the Centers of Excellence at Mt. Sinai, at Bellevue, at the fire department, and the other institutions that are providing a high level of care to the 9/11 victims. They're proposing to replace them with a voucher program where you'd give a chit to any worker who could document that he or she was down there and let them go to their private doctor in New Jersey, Ohio, or Florida—wherever they happened to live. They've said to pursue such a policy would "preserve freedom of medical choice." We fought this vigorously because it would have several adverse effects.

First, it would have a negative effect on the individual workers, who have complicated lung diseases caused by unique exposures and who are often simultaneously suffering from mental health problems. These complex issues require the kind of care you only get in a big teaching hospital, where people have expertise in dealing with this. You send them out to a well-intentioned but inexperienced general practitioner in the suburbs and it's almost inevitable that the person isn't going to get such good care.

The second consequence of this action—and I think that this may be part of the motive—is that if you disperse this population and sent them out to a widely scattered network of private practitioners, then the centralized collection of data would come to an abrupt end. And we would no longer have statistics on what had happened after 9/11.

Do you think federal officials are trying to escape culpability for exposing people needlessly to the caustic dust?
I don't think there's any real way to answer that question because that speaks to motive, and I can't get inside their heads. But I can look at the external actions and say what they're proposing to do is medically ill-advised and makes absolutely no sense.

Whenever a patient asks me where they should go because they've been diagnosed with a certain disease, my immediate answer is to go to the doctor who's already seen 5,000 people with your disease. You don't want to put yourself in the hands of someone who's doing it for the first or the second time, and yet that's precisely what this proposal advocates, which is very short-sighted and ideologically driven.

And protects the government and corporations from billion-dollar lawsuits.
Maybe, but I'll just describe it as ideology.

It's difficult because we've had to spend an enormous amount of effort fighting what I consider an unnecessary fight to preserve the programs that are doing the right thing. Quite frankly, the production of scientific papers from the World Trade Center project has been slowed by virtue of the fact that many colleagues and I have had to make multiple trips to Washington—giving congressional testimony, having private meetings with staff—to advocate what we all think is the right thing. But the trouble is if we didn't do it, then we'd have no scientific papers to write.

So the Bush Administration has done everything they can to slow the process down.
Yes.

Do you get angry?
Yes, but I've never seen much virtue in sitting around sulking. You've got to get past that, and turn it into action. What we've done in the case of the scientific papers from the World Trade Center, for example, is that we've accelerated that process. I've taken my best epidemiologist, David Savitz, who has agreed to chair a high-powered working group that meets every couple of weeks. They plan to get eight or nine papers out within the next six months so that we get the findings from the World Trade Center experience out in front of the public.