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BY Aline Reynolds | The community directly affected by 9/11 rejoiced when the James Zadroga Act was signed into law in early January. But the exact provisions of the bill are still far from being ironed out.
Activating the health portion of the bill will largely be in the hands of Dr. John Howard, who is on the verge of being reappointed as World Trade Center Health Program Administrator. Howard already serves as director of the National Institute for Occupational Safety and Health (N.I.O.S.H.), the federal agency supervising the W.T.C. health programs.
Howard’s goal, he said, is to get the law enacted as quickly as possible once it becomes effective on July 1. “For nine years, we haven’t had any legislation on this issue. Now, we have significant legislation that specifies the goals of the program,” he said. “I want to make sure that folks, within the limitations this program has, receive the care they’re entitled to with respect and consideration.”
But, realistically, it will take about a year to “get all the bugs out” once implementation of the law begins. “This is a complicated area — it’s not comprehensive health care, it’s health care for certain conditions,” said Howard. “We hope everyone is patient through the process.”
Treatment at the W.T.C. Centers of Excellence, he assured, will not be interrupted in the interim period.
The scientific advisory committee consisting of Howard along with occupational physicians, environmental health specialists, a mental health professional, a toxicologist, representatives of W.T.C. responders and others, will determine which illnesses will be added to the bill. The clinics at the Mount Sinai medical center, Bellevue and Elmhurst hospital centers and Gouverneur health care services will make referrals to outside physicians for patients whose illnesses are not covered by the bill.
The committee members, Howard said, will convene regularly starting in the summer. In the meantime, N.I.O.S.H. is preparing a report containing medical literature about cancers possibly triggered by exposure to Ground Zero toxins. The report, Howard said, could lead to the incorporation of specific cancers in the law.
“The great thing about Zadroga is that it has a mechanism built in to study the rates of possible new diseases, to see if there’s some kind of relationship to [9/11] exposure,” said Michael Crane, medical director of the Mount Sinai clinic. “It sets up a really powerful set of resources for the patients.”
Clarifying the terms of the bill, Howard said, will be “a challenge going forward, but with the support we have, we’ll probably be able to undertake that pretty well.”
Howard was first appointed director of N.I.O.S.H. in 2002. “Coming from California, I knew about 9/11 and all that, but I had no idea of the various medical issues that were then taking place afterwards,” he said.
One of the first events he attended was a press conference in New York that August announcing a new medical screening clinic at Mount Sinai.
Howard, a newbie in the federal government, remembers feeling star-struck standing beside then-New York Senator Hillary Clinton at the event.
“This was a very big deal for me. It was just amazing to me that I was even in the same place as she was,” said Howard.
At that time, Mount Sinai and the other clinics were only receiving government funding for the monitoring — not treatment — of 9/11 patients.
“The complaint I got was, ‘you’re not taking care of us — you’re just treating us like guinea pigs by studying us,’” said Howard. “They went to Congress, saying, ‘you need to provide more.’”
In April 2006, a group of 9/11 victims did just that, under the leadership of Representative Jerrold Nadler and other New York Congressional delegates. The group also requested that the federal government appoint someone to run the medical clinics that were about to open. Howard, having led the W.T.C. monitoring program for four years prior, was the first person to be considered for the position. “They wanted a czar – someone who would look at all the aspects of the various parts of the program,” he said. “I really felt this was an important activity I needed to do.”
Howard then began frequenting the W.T.C. Centers of Excellence once every two months, and began to have direct contact with patients about their symptoms and concerns. “It was very gratifying to be able to provide a service that was so desired and needed,” he said.
Crane deems Howard to be a perfect fit for the job. “He’s a very, very skillful leader, and a very open and caring individual,” he said. “He’s a great sounding board to bounce stuff off of about the nature of the program and any administrative problems we run into.”
When his term as N.I.O.S.H. director and W.T.C. program administrator ended in mid-2008, Howard was transferred to the public health law division of the Centers for Disease Control and Prevention, the umbrella agency that oversees N.I.O.S.H. He was reappointed as N.I.O.S.H. director in September 2009, walking into a modified W.T.C. health program that surveyed and treated Downtown residents and school children in addition to first responders and recovery workers. “The big change for me was the community program. That had been started while I was away,” he said.
Then came the climax of the hard-fought battle for continued federal funding in 2010. “People asked, ‘do you think [the Zadroga Act] is going to pass?’ I really didn’t know,” he said. “I was just so worried it wouldn’t pass and would have to be reintroduced into the next Congress.”
As director of the program, Howard wasn’t permitted to lobby for the bill’s passage.
But he anxiously stood on the sidelines, watching his 9/11 advocate friends and patients passionately rally for the cause. And, while he breathed a sigh of relief once the bill became law, Howard suddenly realized he and his team had their work cut out for them.
Howard and his team are now encouraging more of the estimated 60,000 people currently enrolled in the W.T.C. monitoring programs to seek medical care. (Only one-quarter of the enrollees are currently receiving treatment.)
It is essential, he said, that they be treated earlier rather than later. “This population was exposed to a very unique collection of toxic agents,” he said. “It’s important to intervene at the earliest possible time. You get a better medical outcome than if you wait.”