(TNS) — Sept. 11 — What struck Clarence Wilburn Jr., when he arrived at Ground Zero was the heat — and the sheer rawness of it all.
It was November 2001. The towers had fallen two months earlier and flames still rose from the wreckage. The fires would burn for 100 days.
A trained paramedic, Mr. Wilburn of Millbury was deployed to New York with the Toledo Area Disaster Medical Assistance Team, since rechristened the OH-1 DMAT.
For nearly two weeks, the team ran first-aid stations, working 7 a.m. to 7 p.m. They wore respirators to protect themselves from air still thick with ash and dust two months after the terrorist attack.
Mr. Wilburn called home each day to tell his wife, Debra, about his experiences — about the people he'd treated, about the ceremonies for fallen firemen, even about the bus ride from the Sheraton to the site. It was his first time in New York.
When the team returned to Toledo, there was no hero's welcome. Mr. Wilburn resumed his job with Mobile Medic and remained an active DMAT member.
In 2014, however, he noticed blood in his stool. Doctors told him he had cirrhosis, a liver disease common among alcoholics. He had no history of drug or alcohol abuse.
Immediately, Mr. Wilburn linked his condition to his service at Ground Zero. His doctors were not so convinced.
"He was trying to see if maybe that might have something to do with it," Mrs. Wilburn said. "He was always very frustrated that they kept saying, with the liver, they couldn't really confirm it."
But when the coughing began, there was no doubt. In May, Mr. Wilburn was diagnosed with pulmonary fibrosis, a rare condition characterized by scarring of the lung tissue. He was told he would likely need a lung transplant. He declined.
"He felt that he couldn't handle it anymore," Mrs. Wilburn said. "He decided that he didn't want to go through life-saving measures ... and he just wanted to be done. So he's done hurting now. That's what he had told us."
Mr. Wilburn died in July. He was 58.
Scant attention to toll
Few need reminding of the nearly 3,000 who perished on Sept. 11, 2001. Many can even recall where they were when they heard the news.
Cases like Mr. Wilburn's receive less attention. But since 2001, the 9/11 death toll has continued to climb — and will for the foreseeable future.
When the towers collapsed, a slew of chemicals and carcinogens were discharged into the air, said Michael Crane, director of Mount Sinai Clinical Center for the World Trade Center Health Program. Because the fires burned for so long, the toxins remained in the air well after the towers fell, according to a 2002 study.
Equipment designed to protect responders from the harsh environment proved insufficient against so potent and concentrated a mixture.
"Even when they got prepared for it ... the material was so thick in the end they really couldn't use the respirators effectively," Mr. Crane said.
As of March, 1,319 people have died from illnesses resulting from exposure to the toxic environment at Ground Zero, according to data collected by the World Trade Center Health Program, which treats people suffering from long-term health issues related to the 9/11 attacks. More than 92 percent of the deceased were responders.
The health program's records date back only as far as its establishment in 2011 — meaning they omit all earlier deaths. In addition, the data do not include the more than 20,000 responders that Mr. Crane estimates are not enrolled in the program.
Of the 76,972 living responders and survivors who are enrolled, more than half have been certified as suffering from at least one 9/11-related condition. These range from relatively superficial sinus infections to fatal cancers and lung diseases, not to mention mental health conditions such as PTSD and depression.
Immediately after the attacks, many first responders came down with the now-notorious World Trade Center cough, a cough so debilitating that it put some out of work.
Over the long term, Mr. Crane said, 9/11 responders seem to develop cancer at an especially high rate. Nearly 6,600 responders and survivors are living with some form of cancer, and almost 7,400 suffer from a respiratory disorder, according to health program data.
Last year, at the age of just 52, Churton Budd of Toledo, a former OH-1 DMAT Unit Commander and 9/11 responder, died of lymphoma, one of the most common cancers among Ground Zero responders, according to health-program statistics.
When Mr. Budd's parents learned he would be going to New York, they were concerned. They always were when their son deployed to a disaster site.
This time however, neither they nor their son understood the full extent of the danger he faced at Ground Zero, said his father, Geoffrey Colin Budd.
"I don't know if they had any idea about" the health risks, the elder Mr. Budd said.
Mrs. Wilburn certainly did not. And for good reason.
Government officials repeatedly dismissed concerns about the quality of the air at Ground Zero in the wake of the 9/11. Just days after the attacks, then-head of the Environmental Protection Agency Christine Todd Whitman assured lower Manhattan residents that the air was "safe to breathe."
At the time, Mr. Crane said the shock and sense of urgency made it nearly impossible to prevent people from rushing in to join the rescue effort. The practical and technological challenges of equipping so many responders with protective gear further complicated matters.
Looking back, Mr. Crane thinks more could have been done to keep responders safe or at least to communicate the risks — especially for those arriving as long after the attacks as the OH-1 DMAT.
"There could have been many more controlled-environment suits and controlled-environment respirators," he said. "We could have controlled the site better. We had many people volunteer to come down who were not prepared mentally, physically or emotionally to do what they took upon themselves to do very, very bravely, and some of them are quite hurt now."
The World Trade Center Health Program and Victims Compensation Fund represent efforts to make amends.
The fund's first incarnation, active from 2001 to 2004, offered compensation to injured survivors and the families of the deceased. Not until Congress reactivated the fund and established the health program with the passage of the James Zadroga 9/11 Health and Compensation Act did those suffering from the long-term consequences of the attacks gain access to federally funded recourse.
For both the health program and Victims Compensation Fund, reaching responders dispersed across the 50 states and even beyond has proved a major challenge.
"In the New York City area, there's been a tremendous amount of outreach," said Rupa Bhattacharyya, the special master of the Victims Compensation Fund. "But we know there are many people who came from all over the country in response to the crisis to volunteer to work at the site, and reaching them is more difficult."
To advertise its services, the Victims Compensation Fund works with local fire departments, police stations, and congressional offices.
John Feal, a responder injured at Ground Zero and one of the leaders of the effort to pass the Zadroga Act, has long been an active surrogate for the outreach effort. He has traveled across the country publicizing the programs he spent years advocating on Capitol Hill. It was through Mr. Feal that Mr. Wilburn found his way to the health program and Victim Compensation Fund.
"How do I say this without sounding pretentious? Nobody's put more people in the program than I have," he said. "Nobody. And I don't say that lightly."
Mr. Feal knows there is more work to be done. In spite of his efforts, many responders remain unaware of the services available to them. Former OH-1 DMAT member Barbe Fisher said she thinks about half the team members who deployed to Ground Zero don't know of the World Trade Center Health Program.
At Mr. Wilburn's funeral in July, she spoke with a fellow 9/11 responder who had never heard of the program.
Sixteen years after returning from Ground Zero, Ms. Fisher, 65, remains in good health. She doesn't think back to her time there every day. But the memories are never far away.
"I can't say I dwell on it," she said. "I do bring my photo album wherever I'm working ... you know, to remind other people what it was like. A lot of them didn't know."
Ms. Fisher said she doesn't worry about developing a serious illness like Mr. Wilburn's or Mr. Budd's. She figures any affliction would probably have manifested itself by now.
But the risk now may be greater than ever. Cancers stemming from harmful exposure often lie dormant for 15-25 years, Mr. Crane said, meaning the responder population could face a new wave of deadly disease in the coming years. Experts have predicted that, by 2020, the 9/11 death toll from long-term illnesses will surpass the body count in the immediate aftermath of the attacks.
"I'm afraid we have not seen the worst of it yet," Mr. Crane said.
And still, responders and their families see little reason for regret. Ms. Fisher said she thought every responder she'd talked to would rush back into the haze without hesitation.
Mrs. Wilburn is sure her husband would.
"Even though he got sick ... he would have done it again in a heartbeat," Mrs. Wilburn said. "That's what he loved to do — to help people and to be a part of a community."
On Sunday, Mr. Wilburn will join the ranks of fallen responders honored at the 9/11 Responders Remembered Park in Long Island. There, his name will be etched upon the 60-foot granite wall bearing the names of the responders who died as a result of their service at Ground Zero.
His younger brother, Jim Wilburn, will be there. Such ceremonies should be reminders that, even now, 9/11 continues to claim victims, the younger Mr. Wilburn said.
"It's taken a lot bigger toll on this country than what people realize," he added. "People don't realize and don't hear about the people that are passing on today from what they did in 2001."
The flames may have died after 100 days. But almost 16 years later, the fire is still burning.
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