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Since then, six different petitions to the World Trade Center Health Program have pleaded to add autoimmune diseases to the list, but federal health officials have dismissed them all 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 called the National Institute for Occupational Safety & Health (NIOSH), said in a statement that previous petitions to add autoimmune diseases to the list of covered conditions did not meet the “threshold of being substantially likely to be causally associated with September 11 exposures”.

“These things are not very easy to study scientifically,” Wilkenfeld said. “But you don’t have to be a statistician or an epidemiologist to follow that something is wrong.”

Crystalline silica, a mineral used in construction, was a major component of debris – and a notorious autoimmunity risk factor. Other site chemicals, such as organic hydrocarbon solvents and asbestos, have also been linked to immune dysfunction.

But like cancer, the onset of an autoimmune disease can also be influenced by other variables, such as genetics. It can be difficult to determine if a patient has acquired an autoimmune disease as a result of a specific exposure or if they would have contracted it anyway.

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

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

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

“They’ve been really, really persistent and very clear about what they’re going through,” Cone said. “And that has given rise to a lot more research.”

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

It echoed models from earlier studies from the New York City Fire Department (FDNY), which also found an increased risk of systemic autoimmune disease depending on the level of exposure at the site. One study calculated that for every month worked at the World Trade Center after 9/11, the odds of developing systemic autoimmune disease increased by 13%.

A collection of 9/11 Memorial Challenge coins hang on the wall of Jennifer Waddleton’s homeSaul Martinez for NBC News

The 2019 study also looked at a link between autoimmune diseases and PTSD, one of the most common mental health diagnoses after 9/11, which has been linked to autoimmunity in several studies. Community members with PTSD were nearly three times more likely to develop autoimmune diseases, the researchers found.

But caveats abound; sample sizes tend to be small and it is difficult to correct for confounding variables, such as family history and past exposures.

On a disease-by-disease basis, researchers are less likely to find statistically significant case numbers, according to a presentation Thursday by FDNY chief medical officer Dr David Prezant. “But when you add them all up, there is an excessive number of cases in the cluster exposed at the World Trade Center.”

And with rare diseases, the number of cases doesn’t have to be high to be troubling. In the FDNY study population of about 14,000 predominantly white men, even 11 cases of lupus represented a dramatic increase, Prezant noted – five and 13 times more than expected, depending on the level of exposure. In the general population, nine out of 10 lupus patients are women, most 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”. Few studies like this existed even at the time of the last petition, federal health officials discovered after performing multiple searches.

In a statement, a spokesperson for the World Trade Center Health Program 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 re-examine the question ”.

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

“We think there is a connection,” Wilkenfeld said. “And even more than that, if there is any slight benefit of the doubt, patients should be getting the care they need.”

The public has not grasped the number of people who are still sick, getting sick and still in pain, Wilkenfeld continued. “I think America really owes these people a debt, doesn’t it? It was an attack on America. It wasn’t an attack on Lower Manhattan.”

“It is unfair to tell patients they have an unrelated disease,” he added. “I think that’s really the point.”

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