World Trade Center responder John Coughlin of Sayville suffers from a host of conditions: heart disease that led to open-heart surgery and a pacemaker; diminished lung capacity; sleep apnea; and stomach disorders.
But the 57-year-old former NYPD emergency services officer, who responded when the towers fell on Sep. 11, 2001, and worked on rescue and recovery at Ground Zero, said it is the burning pins and needles in his legs and feet that cause him the most pain.
“My legs get stiff and I have restless leg syndrome and they keep me awake at night,” he said. “And I just can’t stand too long.”
He is not alone. Researchers at Winthrop-University Hospital in Mineola in a study published this month in the Journal of Occupational and Environmental Medicine found that those exposed to the toxic 9/11 brew were 15 times more likely than those not exposed to have symptoms of neuropathy. These can include numbness, burning pain, pins and needles, unsteadiness, muscle cramps and weakness.
But, unlike many other conditions, including lung and breathing disorders and 64 cancers, neuropathy — which has no cure — is not covered under the James Zadroga 9/11 Health & Compensation Act. This means that patients have to pay out of pocket for drugs to relieve the pain.
The Winthrop researchers and others hope the study will change that.
“We’ve got to help these guys. We owe them that,” Dr. Mark Stecker, chairman of neuroscience at Winthrop and an author of the study, said at a news conference Thursday.
Dr. Marc Wilkenfeld, chief of occupational and environmental medicine at Winthrop, who treats 9/11 responders as part of the World Trade Center Health Program, said he approached Stecker several years ago when he noticed dozens out of the hundreds of responders he had evaluated had the condition.
Knowing that toxic chemicals can damage nerves, Wilkenfeld and Stecker first devised a study in which nerves taken from rats were exposed to 9/11 dust. The study, published in 2014, found that the dust indeed damaged the rat nerves. They said they had hoped this would be enough to persuade the National Institute of Occupational Safety and Health, or NIOSH, which oversees the World Trade Center Health Program, to include neuropathy on the list of covered conditions.
When they learned it wasn’t, they conducted a 15-question survey on neuropathic symptoms, completed by 255 people, about half of whom were not exposed to the World Trade Center site and half of whom were. They found those exposed were 15 times more likely to report neuropathic symptoms than those not exposed. Further, the more the patient had been exposed to the 9/11 site and cleanup, the worse the symptoms were likely to be, the study found. Wilkenfeld said he did not know how many responders could be suffering from neuropathy but he estimated it could be “hundreds, if not thousands.”
The researchers said they are planning a nerve conduction study to try to figure out how the nerves are damaged.
John Feal of Nesconset, founder of the FealGood Foundation, the 9/11 advocacy group, said the study “gives us validity” for the many suffering responders. And he vowed to fight to get the condition added with the same “vigor and zest” he and others brought to getting Congress in December to reauthorize the Zadroga act and extend coverage for 75 years.
Manhattan lawyers Michael Barasch and Noah Kushlefsky, who together represent about 10,000 responders, said NIOSH should put neuropathy on the list.
“We can only hope with the data they will add it,” Barasch said.
NIOSH spokeswoman Christina Spring said the agency received a petition earlier this month requesting that neuropathy be added to the list of covered conditions, citing the Winthrop study as evidence.
Spring said the reauthorization now requires NIOSH to have an independent peer review of the evidence before adding a condition. The deadline to act on petitions also has been changed from 60 days to 90 days, she said.
She said NIOSH plans to post the petition on its website “in the near future.”