‘I feel betrayed’: Some 9/11 responders still face major health care obstacles

As a volunteer firefighter after 9/11, Kevin Maxwell spent seven months carrying out search and rescue operations at ground zero, filling up buckets of debris to create pathways into the rubble. It wasn’t just a job for Maxwell but “a calling”; he was searching to find some of the 18 friends from the fire department he lost in the attacks.

Maxwell, 72, eventually retired and moved to Virginia in 2011. By then he’d been diagnosed with asthma, sinusitis and an anxiety disorder — common conditions for first responders and survivors of 9/11. So when he began feeling a sharp pain in his right lung in 2018, his pulmonologist immediately recommended an X-ray. Maxwell’s service meant he was entitled to free health care for any ailments deemed medically connected to his exposure at ground zero. Relieved that he didn’t have to worry about whether he could afford the scan, Maxwell scheduled it.

His relief, however, dissolved when a letter from a collection agency landed on his doorstep. Months later, after another procedure, it happened again, and then again and again, until Maxwell was “getting hounded about money” by bill collectors.

I feel betrayed,” Maxwell said. “I don’t want any money. I don’t want a medal. Just remember us. Don’t leave us in the dust.”

After the attacks of Sept. 11, 2001, Congress created and funded the World Trade Center Health Program, or WTCHP, to pay for the ongoing medical care of survivors and first responders who suffer from conditions related to their exposure at ground zero. Those still in metropolitan New York can simply seek treatment at one of several hospitals involved in the program, but for the roughly 24,000 responders and survivors who no longer live nearby, the WTCHP contracts the job out to a Wisconsin-based company called Logistics Health Inc., or LHI.

In a series of interviews, nearly 20 patients — known as “members” — served by LHI and seven current and former employees said issues like Maxwell’s have become routine and that LHI is not only failing to achieve some of its most basic aims but also worsening members’ trauma.

They are being forgotten,” said Tiffany Young, a lead case manager who has been with LHI for seven years. “Their needs are being unaddressed as well as minimized. Their time, service and sacrifice [have] all gone out the window. They’re simply numbers to be counted and tasks to be checked off of the checklist.”

Some said that in addition to members’ paying for medications they thought would be covered and systemic delays in approval for procedures or appointments, LHI has made it increasingly difficult for them to get answers or even personal attention.

According to current and former employees, the company has phased out one-on-one relationships between members and case managers in favor of a call center structure, and even though it serves a population for whom post-traumatic stress disorder is common, they say, the company doesn’t adequately train staff members in mental health. In one case, LHI imposed restrictions on a member for being “disruptive” — putting him in an agreement mandating that he interact politely with staff members or risk his care’s being suspended.

“Unfortunately, the way the program functions, you either figure it out or you just suck it up and go through your primary health insurance,” said Young, who went on leave last month because she was burned out.

‘A middleman that barely exists’
LHI isn’t an insurance company. Instead, it operates as a middleman between the 9/11 community and the health benefits they’re promised.

The National Institute for Occupational Safety and Health, the government agency that houses the program, awarded LHI its first $11 million federal contract in 2008. By 2010, LHI was serving about 4,000 WTCHP members around the country. That number, as well as the medical conditions the community suffers from, has ballooned in recent years. As of June, LHI was responsible for the needs of about 24,000 members, according to the Centers for Disease Control and Prevention — about a 500 percent increase since 2010.