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Autoimmune diseases may be rising for 9/11 survivors. But the government hasn't acknowledged a link.

The 9/11 compensation fund and the World Trade Center Health Program don't acknowledge autoimmune diseases, so people with those diseases aren't eligible for free health care or compensation.
Image: Jennifer Waddleton at her home on Sept. 9, 2021 in Lehigh Acres, Fla.
Jennifer Waddleton at her home in Lehigh Acres, Fla., on Thursday.Saul Martinez for NBC News

Jennifer Waddleton was 31 years old when she was called to New York City on Sept. 11, 2001, a healthy single mother who'd been working in emergency medical services since high school.

She returned early the next morning to her headquarters in New Jersey, seemingly unharmed, but she was among the estimated 400,000 people exposed to the toxic debris that snowed down on lower Manhattan after the twin towers collapsed.

Twenty years later, Waddleton, a former paramedic, can barely withstand sunlight or stay on her feet for more than 30 minutes. She has lesions in her brain, her hair is falling out, and her mouth is so damaged from medication that she recently broke a front tooth on rice.

"My body is failing me at 51," said Waddleton, who has been diagnosed with several conditions tied to 9/11, including early-stage cancer, post-traumatic stress disorder, chronic acid reflux and sinus issues.

But the disease that upended her life is one scientists weren't expecting: lupus, an autoimmune disease in which the body's defense system attacks its own organs and tissues.

The symptoms started three years after 9/11: migraines, trouble swallowing, fatigue so overwhelming that she needed to nap in a parking lot after she dropped her son off at school. Doctors didn't take the complaints seriously, she said, until she experienced kidney failure in 2012.

She wondered for years whether the disease was related to 9/11 and whether there were others like her.

"In the back of my head, I always knew," Waddleton said. "But everybody was like: 'No, no, no, no, no, there's nothing wrong with you. It's all in your head. You need sleep, you work crazy hours. Stop complaining.'"

Autoimmune diseases appear to be on the rise among 9/11 victims and first responders. The mysterious category of diseases includes over 100 medically complex conditions, from rheumatoid arthritis to multiple sclerosis. Some are organ-specific, but others are systemic, causing attacks across the body.

Boots worn on 9/11 by Jennifer Waddleton.Saul Martinez for NBC News

Because such diseases tend to be rare and hard to diagnose, the problem has crept up slowly, and there are no solid case numbers. Thousands of people have self-reported cases to the World Trade Center Health Registry, but they have proven difficult to verify.

Scientists still aren't sure what causes the diseases to arise in the general population, let alone the 9/11 cohort. But a growing body of research on 9/11 victims suggests that the emerging diseases may have links to the attack — the medical aftershocks of trauma and toxic dust.

Intense exposure to the giant dust cloud at ground zero nearly doubled the likelihood of systemic disease among 9/11 first responders in a recent study — and PTSD nearly tripled it for community members.

But the federal government, which operates programs to support the 9/11 community with long-term health issues, has yet to acknowledge the potential connection. Unless that happens, patients like Waddleton can't get access to health care or compensation for their autoimmune diseases.

"The problem has been that from the very onset, the burden of proof is put on the responders," said Dr. Marc Wilkenfeld, a specialist in chemical exposures who heads the Occupational Health division at NYU Langone medical center.

The September 11th Victim Compensation Fund and the World Trade Center Health Program provide payouts and health care coverage for survivors and responders with ongoing health issues connected to 9/11.

But neither the compensation fund nor the health program acknowledge autoimmune diseases, which means people suffering from those diseases not only aren't ineligible for free health care, but they also can't get compensation for their suffering. The list of conditions the federal programs cover has grown. Notably, the health program added 50 types of cancer in 2012.

A basket filled with medication that Jennifer Waddleton takes daily.Saul Martinez for NBC News

Since then, six petitions to the World Trade Center Health Program have asked to add autoimmune diseases to the list, but federal health officials have denied all of them for insufficient evidence, most recently in 2017.

A spokesperson for the health program, which is run by a division of the federal Centers for Disease Control and Prevention called the National Institute for Occupational Safety & Health, said in a statement that previous petitions to add autoimmune diseases to the list of covered conditions haven't met the "threshold of being substantially likely to be causally associated with 9/11 exposures."

Wilkenfeld said: "These things are not very easy to study scientifically. But you don't have to be a statistician or an epidemiologist to follow that something's wrong."

Crystalline silica, a mineral used in construction, a major component of the debris, is a noted risk factor for autoimmune disorders. Other chemicals from the site, like organic hydrocarbon solvents and asbestos, have also been associated with immune dysfunction.

But similar to cancer, autoimmune disease can also be influenced by other variables, like genetics. It can be difficult to determine whether patients got autoimmune diseases from specific exposures or whether they would have gotten them regardless.

And compared to the extensive research on cancer, less is known about potential external causes of autoimmune diseases, said Dr. James Cone, medical director of the World Trade Center Health Registry at the New York City Department of Health and Mental Hygiene.

"We really have very few good toxicologic studies that could be used to evaluate the biological plausibility of something like World Trade Center exposure and subsequent immune diseases," he said.

But rising concern from 9/11 victims has spurred investment in studies to fill the gaps.

"They've been really very persistent and very clear about what they're experiencing," Cone said. "And it has resulted in a lot more research."

In 2019, Cone was one of the authors of a study based on World Trade Center Health Registry participants that found that responders with intense exposure to the toxic dust were almost twice as likely to develop systemic autoimmune diseases.

It echoed patterns from New York City Fire Department studies, which also found increased risk of systemic autoimmune disease based on site exposure levels. One study calculated that, for every month worked at the World Trade Center after 9/11, the odds of developing a systemic autoimmune disease increased by 13 percent.

A collection of 9/11 memorial challenge coins hangs on a wall of Jennifer Waddleton's homeSaul Martinez for NBC News

The 2019 study also examined a connection between autoimmune diseases and PTSD, one of the most common post-9/11 mental health diagnoses, which has been associated with autoimmunity problems in several studies. Community members with PTSD were nearly three times as likely to develop autoimmune diseases, researchers found.

But caveats abound: Sample sizes tend to be small, and it is hard to correct for confounding variables, like family history and previous exposures.

On a disease-by-disease basis, researchers are less likely to find statistically significant case numbers, according to a presentation Thursday by the fire department's chief medical officer, Dr. David Prezant.

"But when you add them all together, there is an excess number of cases in the World Trade Center-exposed group," Prezant said.

And with rare diseases, case numbers don't need to be high to be troubling. In the fire department's study population of about 14,000 men, most of them white, even 11 lupus cases represented a dramatic increase, Prezant said — five and 13 times higher than expected, depending on exposure level. In the general population, 9 out of 10 lupus patients are women, more likely women of color.

But the World Trade Center Health Program has a high bar for what constitutes evidence; only published, peer-reviewed epidemiological studies that focus specifically on the 9/11 cohort are "relevant." There were few such studies at the time of the last petition, federal health officials found after conducting multiple searches.

In a statement, a World Trade Center Health Program spokesperson said that if the program receives a new petition or becomes aware of new research "that has the potential to support a causal association," then the program will "revisit the issue."

Four years later, the odds look better for a positive ruling, Wilkenfeld said.

"We feel that there is a link," Wilkenfeld said. "And even more than that, if there is a slight benefit of the doubt, patients should be given the care that they need."

The public hasn't grasped the numbers of people who are still sick, becoming sick and still suffering, Wilkenfeld said.

"I think America really owes a debt to these people, right?" he said. "This was an attack on America. This was not an attack on lower Manhattan.

"The fact that patients are being told that they have a condition that's not related is unfair," he added. "I think that's really the bottom line."

Jennifer Waddleton with her dog.Saul Martinez for NBC News

But sound science happens slowly, and meanwhile, a compromised immune system can feel even costlier in the Covid-19 pandemic. The virus has confined Waddleton to her home since March 2020, making the odd jobs that kept her afloat, like working for Uber and Instacart, potentially deadly gambles.

She owes thousands of dollars in medical bills, with no idea where the money will come from. Florida is done sending unemployment benefits, and Social Security disability payments don't cover her bills and mortgage. Her little house in Florida is the first one she has owned, a recent milestone, and she hopes to leave it for her son, who was just 4 years old on 9/11.

"Everybody and their brother is wearing the #neverforget sign, but meanwhile, people are literally losing everything," said Waddleton, who manages a group on Facebook for 9/11 EMS workers with autoimmune diseases.

"They gave out so much money in the beginning that they left everyone else hanging," she said. "It's incredibly frustrating. This wasn't supposed to be my life."