WASHINGTON - If there's one thing 9/11 responders have learned over the last decade and a half, it's that Congress won't do anything to soothe the illness and tragedy that is still unfolding 17 years after the attacks -- unless it's forced to. So, with the 9/11 compensation fund set to expire in 2020 -- and maybe run out of money early -- they're getting an early start trying to persuade the lawmakers in Washington to do better this time.
"This is my 259th trip, now, to DC," said John Feal on Wednesday. Feal, with his FealGood Foundation, has been the epicenter of 9/11 organizing ever since he discovered how difficult it was to get worker's comp to cover him for losing half his foot in 2001, and how many thousands of responders were falling through the cracks.
He never imagined it would be this hard.
After the planes hit the towers on Sept. 11, 2001, there was nothing Americans wouldn't do to heal the wounds. Thousands rushed in to search, clear, care and reconstruct. President George W. Bush and Congress set aside $20 billion almost immediately for recovery. Just three weeks later, Congress created the victims' compensation fund that paid out $7 billion over the next three years to the injured and the families of the dead.
It was America at its finest, unified self. But that is the only time it ever was not a struggle for the people pummeled by the terrorist attacks to get the attention and aid of their government.
Even as the firefighters, police offices, volunteers, construction workers and so many others grew ill because of their sacrifices, it took six years after the first victims' compensation fund closed to create a new one, as well as a program to treat the sick. It very nearly didn't happen at all, with the James Zadroga Health and Compensation Act passing only at the very end of 2010, with a third of the House's members already gone for the year.
Congress had to be shamed into action, and from that, responders got five years of care out of their government. In 2015, with the treatment program expiring, it was the same. It again took shame, and a grueling campaign of visits by sick and dying responders with their wheelchairs, inhalers and oxygen tanks. Near the end of the year, Congress added another five years of compensation and made the treatment program permanent, even as they used the 9/11 bill as leverage to pass other, less popular initiatives.
Now the compensation money -- some $7.375 billion appropriated since 2010 -- is running out, possibly before the fund's mandated closing in 2020. If after then doctors link a responder's cancer or lung disease or traumatic stress to 9/11, well, tough luck.
The 9/11 survivors and their supporters knew in 2010 and 2015 that the money would not be enough. But that was all Congress would give them, and they took what they could get.
Now, knowing how hard it was to make Congress hear them before, they are responding again. This time, they want to make the compensation fund permanent. They no longer want to depend on too many lawmakers who pledge every year on Sept. 11 to never forget, but mostly never remember when it comes time to pay the butcher's bill.
Feal never really imagined he'd have to work so hard to make politicians care about the people who ran towards the towers, but he says he's prepared for it now.
"This isn't a sprint, it's a marathon. This is going to take a year, a year of their lives," Feal said, pointing out some of the responders along with him: Herb Weinberg, from the New York City Department of Corrections; former NYPD officer Tom Wilson; Brendan Fitzpatrick and Kenny Anderson, both also from the NYPD; Rob Serra, a city firefighter; Rich Palmer, another Corrections officer; Jim Mckay, of the FDNY, and Matt McCauley, a lawyer who was a cop on 9/11.
Wednesday's visit to House Republican offices was the second trip of this new campaign. They found the now-familiar routine of going begging to legislators is not getting any easier.
"Mentally, this is tough. This is taxing," Feal said. "We've got to drive five hours down 95. We got to walk around office to office all day. Then you've gotta drive home, and then go see your families and tell them that you think you did a good job. And you hope you did a good job."
In 2015, some of the responders making the case to Congress were already dying. They loaded their wheelchairs and medical supplies into cars for numerous trips to Washington, anyway. That's what it took for them to get lawmakers' attention. Some have since died.
One was New York City Firefigher Ray Pfeifer, who became the poster child of that effort, perhaps even more so than the responders' celebrity patron, Jon Stewart, who delivered Pfeifer's eulogy last year. Feal ran strategy and logistics. Ray was the soul and compassionate heart.
This time around, the responders don't have Ray. They are wearing Pfeifer's name on the golf shirts that pass as uniforms, stenciled -- fittingly -- on the sleeve, a spot where cops, construction workers and firefighters are not generally comfortable wearing their hearts.
Pfeifer's memory helps, but it doesn't replace what he did.
"Fourteen years of doing this has taken its toll," he said. "Ray passing away last year took its toll. Things are never going to be the same. I think Ray would want us here today finishing what Ray was a part of. Ray is with us today," Feal said.
He knows Congress could again offer a partial package, and leave it up to future cancer-stricken responders to come calling again when the money again runs out. But he and the others hope this time legislators will see fit to solve the whole problem, and let ailing responders spend their time enjoying the rest of their lives as best they can, instead of running exhausting campaigns to keep politicians to their words.
"Listen, we're never going to tell [Congress] 'We want so many years.' We want permanent," Feal said. "And that's what we're here for."