FAIRVIEW, Ore. — A lifelong first responder and longtime incident commander in Oregon, Mike Lohrey answered the call in 2001, responding with a team to Ground Zero in the wake of the Sept. 11 terrorist attacks.
More than two decades later, like many, he's facing serious — and deadly — health problems. In spite of his service after 9/11, Lohrey told KGW that it has been an uphill battle to finally secure the benefits he and other first responders and survivors were promised by the federal government.
"I've been in a command position since 1989 in the U.S. Forest Service, first as a Type 2 Incident Commander, then as a Type 1," he explained. "Type 1 is the highest you can get ... and we have 16 Type 1 teams in the United States that are interagency, that go anywhere in the nation and deal with disasters."
His career took him to disaster sites all over the country; from hurricanes in the East, to wildfires in the West. In September 2001, he and a team of 40 deployed to Manhattan, New York, just 10 days after the 9/11 attacks.
For 30 days, they worked alongside New York's finest and other first responders, setting up warehouses, stocking up supplies and writing up plans.
"It was a privilege because just helping out the people — especially the firefighters that are our brethren, you know — helping all those folks out best we could," Lohrey said.
Lohrey recalled Ground Zero, what the crews there called "The Pile," and how it continued to burn for days and days, as firefighters and other responders shifted from rescue to recovery missions.
"You could see it if you went down there at night," Lohrey recalled. "You could see the particles and the dust all over the place."
The images of that time stayed etched in his mind in the years that followed, as health impacts began to show.
"I wasn't diagnosed with it until fairly later, and then it went boom," he said.
It was lung disease — fibrosis. Over the past couple of years, it's gotten rapidly worse. He relies on an oxygen tank 24/7.
"People don't understand what it's like ... somebody's sitting on your chest or something, and you can't get enough air," he explained.
When he got back in touch with his team from that mission, he learned that many of them faced similar health problems.
"Finding out more about the health issues, and 25% of the people who went with me to the World Trade Center either have passed, or have a disease similar to mine, or have cancer," he said.
The uphill climb
With his condition deteriorating, Lohrey needs a double lung transplant. He hopes to qualify after undergoing a series of tests at St. Joseph's Hospital in Phoenix. However, just getting to this point — getting approval or pre-authorization for those tests — was infuriating, frustrating and slow. He said it took months for the right people to sign off.
"You know, well, if you die between ... if your time is limited, 'Not my problem.' They just don't care," he said of the attitude of the contractor in charge of administering his benefits, MCA-Sedgwick.
MCA-Sedgwick provides Nationwide Provider Network (NPN) services. According to their website, the NPN is a network of health care providers across the country that provide World Trade Center-related medical care to program members who live outside the New York metropolitan area and want to receive their care locally.
"The program is not health insurance. The program only provides limited benefits for certain conditions that the program will cover," said Benjamin Chevat, the executive director of 9/11 Health Watch, a nonprofit advocacy and watchdog group.
Chevat explained that in the short time MCA-Sedgwick has had the government contract, since late summer 2022, members have encountered a series of problems.
"They couldn't answer the phones, they had wait times of hours," he said. "There were real problems with their network. Again, in the title, it's called the National Provider Network and their network was not as good as the previous network. Lots of different issues in terms of service delivery."
Lohrey and his wife, Teresa Bright, took their complaints to the top — contacting the Centers for Disease Control and Prevention. The WTC Health Program is a division of CDC's National Institute for Occupational Safety and Health (NIOSH).
"We had to go to their bosses. We had to go to the CDC to really get them to hold their feet to the fire, to get something done," said Lohrey.
"If Mike did not have me to advocate for him, he probably would not be getting even the evaluation for the lung transplant. He would not be able to fight the battles with Sedgwick, and get what he needs." Bright added.
Although their issues were eventually resolved after getting the CDC to look into the delays, they told KGW they worry for others who are facing medical problems after 9/11 who rely on this contractor for live-saving benefits.
In a statement, the CDC told KGW that they are "aware that some members in the Nationwide Provider Network (NPN) have experienced issues in accessing care in the WTC Health Program."
"The WTC Health Program continues to actively work with Managed Care Advisors (MCA) to optimize the service they are providing, resolve any member concerns, and ensure ongoing performance improvements," the agency said.
KGW never heard back directly from MCA-Sedgwick.
For Lohrey, a working set of lungs can't come soon enough. He'd like to get back to the things he's done his entire life: skiing, hunting and fishing. At the very least, he'd like to take his dog, Zorro, on a walk around the neighborhood.
But when asked if he has regrets, if he wishes he hadn't gone to Ground Zero, his reply is this:
"No. I'd do it again. Even knowing the results."
The CDC states that they encourage any individual member who is experiencing challenges getting care in the NPN to contact the WTC Health Program at wtc@cdc.gov or call the Program Call Center at 1-888-982-4748.
Chevat with 9/11 Health Watch told KGW his organization can also help. In addition to articles and resources posted online, the website has a portal where members can submit questions or concerns directly to his team.