Retired NYPD Det. Richard Volpe, now a St. Augustine, Florida, resident, worked on the rescue and recovery efforts after the Sept. 11, 2001 terrorist attacks. He developed a rare autoimmune disease that attacked his kidneys.
FBI agents Thomas and Jean O’Connor, seen here at the Pentagon in the aftermath of the Sept. 11, 2001 terrorist attacks. The spouses, now retired, worked on rescue and recovery efforts for weeks.

Soon, 2,983 names, so many familiar to New York's Lower Hudson Valley residents, will be read aloud at what was ground zero on Sept. 11, 2001. Local towns and villages will hold similarly solemn ceremonies remembering residents lost 24 years ago in the terrorist attacks at the World Trade Center, Pentagon and Shanksville, Pennsylvania. Speeches and prayers will include pledges to "never forget."

Meanwhile, the World Trade Center Health Program flounders, advocates warn, as 9/11 responders continue to die from the toxic exposures at ground zero. Survivors, including those who lived, worked or went to school in lower Manhattan, face similar illnesses.

The WTC Health Program, established as part of the James Zadroga 9/11 Health and Compensation Act of 2010, offers screenings and treatments for diseases and disorders classified as caused by exposures on Sept. 11, 2001, and the months after, reports the Rockland/Westchester Journal News, which is a part of the USA TODAY Network.

Among the issues in question: The status of long-planned studies to include World Trade Center Health Program coverage for conditions like cancer and autoimmune disorders, which have been seen at what appears to be higher incidence among the 9/11 community.

Any delays weigh on 9/11 survivors like retired NYPD Det. Richard Volpe, who developed a rare autoimmune disease that's led to one kidney transplant. Some 13 years after his first transplant, Volpe said he lives in trepidation about when his new kidney could fail.

"Eventually it's gonna kill me," said Volpe, who receives no WTC Health Program benefits and support for the illness because it has yet to be categorized as a 9/11-related covered condition. "I have a lot of concerns with my family, the fact I have a wife and two beautiful daughters."

WTC program delivers on a key promise

The World Trade Center Health Program is administered by the National Institute of Occupational Safety and Health or NIOSH, part of the U.S. Centers for Disease Control and Prevention (CDC,) all under the HHS umbrella.

More 9/11 responders have died from exposures to the toxins that swirled in the air after the Sept. 11, 2001, terrorist attacks than were killed that day in lower Manhattan, the Pentagon and Shanksville, Pennsylvania.

About 140,000 first responders and survivors are enrolled in the WTC Health Program; last year, 10,000 signed up, and it's expected a similar number will join the program in 2025.

Thomas O'Connor, a retired FBI agent, responded to the Pentagon within 15 minutes of a jetliner slamming into it. Politicians have supported the 9/11 community, he said, but what about now?

The WTC Health Program is small and relies on other departments, like NIOSH and CDC, to work on grants, research and coverage approvals. Cuts in those branches of HHS cascade down and damage the WTC Health Program's effectiveness, advocates say.

Amid rounds of cuts, restorations and buyouts, WTC Health Program staffing is down to around 80 employees, 9/11 advocates say, even though the program is authorized to have 138 workers.

Meanwhile, the Trump administration and HHS leadership have promised to protect the WTC Health Program and its mandate.

On Sept. 11, U.S. Health and Human Services Secretary Robert F. Kennedy Jr. shared on X that "@POTUS and I will ensure the HHS World Trade Center Health Program continues to serve our 9/11 heroes-firefighters, police, cleanup crews, survivors, and Pentagon workers. We will never forget."

Information lockdown?

Feeding the chaos, 9/11 advocates say, is a seven-plus-month information blackout from the WTC Health Program that they say has suffered under the second administration of President Trump and Kennedy's leadership.

An HHS spokesperson denied an information blackout. The program is accepting, reviewing, and processing new enrollment applications and certification requests, according to HHS, and any information ban was lifted in February.

Benjamin Chevat, executive director of 911 Health Watch, disputes that a communications ban or "temporary hiatus" had been lifted.

But, Chevat said, the communications failure is just part of the issues at HHS that challenge the WTC Health Program.

Staffing losses and a lack of research into 9/11-related illnesses plagues the program, losses Chevat pins on Kennedy.

“The issue is not just the failure to communicate, the issue is the impact that failure to communicate seven months into (Kennedy's tenure) has on 9/11 responders and survivors," Chevat said.

Advocates: WTC program antithesis of 'waste, fraud and abuse'

Under the banner of tackling waste, fraud and abuse, WTC Health Program has faced a couple rounds of cuts, including a plan in February announced by the Department of Government Efficiency, or DOGE, then run by Elon Musk.

"Individuals with 9/11-related conditions should not have to rely on repeated uproars from the public and the media to obtain the care they are owed under the law and so desperately need," U.S. Sens. Kirsten Gillibrand and Charles Schumer, of New York, wrote in an Aug. 5 letter to Kennedy, warning of treatment delays.

Former U.S. Rep. Peter King said the WTC Health Program is the wrong place to look. The Long Island Republican co-sponsored the Zadroga Act and championed its reauthorization in 2015.

"I've been in government 50 years," said King, who served in Congress from 1993 to 2021 and before that served as Nassau County comptroller and on the Hempstead Town Council. "There is waste, fraud and abuse."

But King called the WTC Health Program "scandal-free."

"This program works," he said. "It's a life-or-death program."

King believes Trump and Kennedy must not be aware of HHS policy's impact on 9/11 responders facing illness.

"I would just like media attention focused on it, get it to the president, in front of him," King said. "It would be resolved in 10 minutes."

At just 33, rare autoimmune disease attacked 9/11 responder's kidneys

Volpe was an NYPD detective in the narcotics division on Sept. 11, 2001. He was assigned to Ground Zero and the Staten Island landfill over the next six months.

In June 2003, a kidney biopsy showed he had IgA nephropathy, an autoimmune disorder that can cause kidney damage. Within a year, he lost 60% of his kidney function.

According to the National Kidney Foundation, this rare disorder affects about 1 in 100,000 and leads to kidney failure in about 1 in 5 people within 10 years of diagnosis.

The WTC Health Program helps him with breathing and digestive issues he's developed because those are approved illnesses. But because autoimmune disorders like IgA have not yet gone through the full coverage approval process, his personal insurance covers those treatments and medications.

Volpe, his doctors and 9/11 advocates had explored getting autoimmune disorders like his covered by the WTC Health Program for decades now.

Volpe, who now lives in Florida, acknowledges that government can move at a glacial pace. But now progress is completely frozen.

"It's been slow roll as it is," he said, "but then it stopped dead."

Volpe's focus now is on his family.

Back in 2001, he was 33 and single. He chose pension benefits that fit his lifestyle then.

"I wasn't even thinking about getting married," he said. Now 57, he's married and an "older dad, magically" to two girls, ages 10 and 7.

"They don't get my pension," he said. And if his autoimmune disorder isn't covered by the WTC Health Program, they wouldn't get 9/11-related death benefits, either, he fears.

Former FBI agent can't get cardiac coverage

Thomas and Jean O'Connor are former FBI agents and spouses. On Sept. 11, 2001, Thomas arrived at the Pentagon within 15 minutes of American Airlines Flight 77 crashing into the building. Jean O'Connor was at Quantico that day and also responded.

Tom O'Connor recalls staying the first 24 hours. They sifted through black smoke while the building was still on fire. Then they worked in 15-hour shifts.

Jean O'Connor was a team leader on evidence recovery, working with FEMA search-and-rescue team clearing debris. When her team found human remains, they would document the location, place them in a body bag then an honor guard would carry the remains out in a dignified manner.

O'Connor, as a leader in the FBI Agents Association years ago, advocated for the inclusion of the Pentagon and Shanksville, Pennsylvania crash sites in the WTC Health Program. But when he suffered a heart attack in July, he didn't immediately think about 9/11 as a contributing factor.

Because WTC Health Program hasn't made progress on studying cardiac health connections, the costs and treatments might end up being covered. "Like it is or it isn't," Tom O'Connor said, "but either way they should look at the studies or the paperwork and make a decision."

Jean O'Connor, now 62, hasn't developed any possible 9/11-related illnesses. Besides the cardiac issues, Tom O'Connor, 61, has developed digestive issues that are being documented for possible WTC Health Program coverage.

"But knock on wood, other than that we're pretty good," Tom O'Connor said.

At the Pentagon, 125 were killed in the building, as well as 64 passengers on the plane. Some 27 FBI employees have died since from 9/11-related illnesses.

But the O'Connors, who have retired to West Virginia, believe more deaths should be considered 9/11 related. Delays in classifying more illnesses hurt people, Tom O'Connor said.

He recalled an FBI colleague who developed an autoimmune disease, ended up needing to use a wheelchair and then died. Throughout her illness, she couldn't get assistance from the WTC Health Program, nor could her family receive support because her illness was not certified with the program.

She and her family were financially devastated, O'Connor said, and her kids couldn't tap into benefits, like college funding, that comes after a line-of-duty death.

They also felt dishonored. "Now this agent is not on the FBI Wall of Service," O'Connor said. "That means a lot to those of us in law enforcement."

But respect for service needs to be shown in more ways than just names on monuments. "All of us responded because it was the right thing to do," Tom O'Connor said. "The government needs to continue to do the right thing to support these people."

This article originally appeared on Rockland/Westchester Journal News: This 9/11 survivor developed a rare disease. He's far from alone, and in trouble.

Reporting by Nancy Cutler, Rockland/Westchester Journal News / Rockland/Westchester Journal News

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