911 Health Watch calls on Secretary Kennedy to Lift Communications Ban on the World Trade Center Health Program and Allow the Program to Respond to Conditions that Appear to Have Increased Incidence Impacting 9/11 Responders

August 26, 2025

FOR IMMEDIATE RELEASE

Contact: Benjamin Chevat
Ben.Chevat@911HealthWatch.org 

911 Health Watch wrote to Health and Human Services Secretary Robert Kennedy regarding his continuing communications ban that is preventing the World Trade Center Health Program from responding to the reported increased incidence in certain conditions facing 9/11 responders and survivors.

This pause has shut down all normal communications between the 9/11 community and the World Trade Center Health Program, and is impacting the program’s normal functioning.  Given that it is now more than seven months since the new administration took over, it is long past time to remove the ban on the program interacting with the 9/11 community.

This supposed “temporary communications ban” has stopped the program’s planned announcement of its determination regarding several long-standing petitions to add conditions that have been pending for some time, among them petitions made by all the clinic directors to add cardiac conditions and autoimmune conditions to the list of covered conditions by the program, following the requirements of the Zadroga law.

But of even more concern is that this ban has stopped the program’s response to questions that have been raised regarding its surveillance and its surveillance capacity for new emerging conditions.

Before the new Administration’s communications ban was put in place, we, along with representatives of the fire, police, building trades, public employees, and responder and survivor advocates, had been discussing with the WTC Health Program ways to improve the level of health surveillance that the program was conducting on program members and especially on how it was responding to reports of increased incidence of several rare conditions impacting the program’s members. Because of this ongoing communications ban, we are being told that these issues cannot be discussed.

The normal functioning of the program involves collaboration with concerned parties such as our organization, the unions representing police, fire, EMS, construction trades and others, and individuals representing responders and survivors. This ban is preventing the normal functioning of the program.  That is bad enough on its own, but this ban has also stopped the program from responding to the concerns about the program’s surveillance capabilities. 

To be clear, it is possible that these conditions that are of concern will not be shown to occur at increased frequency in this population upon closer examination. But we need to have them reviewed and confirmed or disproved as soon as possible, because the 911 responders and survivors who have these illnesses and conditions need and deserve to know.

Here are four conditions that we have identified for closer examination to the WTC Health Program, but we do not know if these self-reported conditions are accurate and we do not know what the program’s response is and will be to them:

  • Immunoglobulin A nephropathy (IgAN). This condition is also known as Berger’s disease, and is a progressive autoimmune kidney disease with a possible increased incidence of 24 self-reported cases in World Trade Center General Responder Cohort of over 55,000 participants.   This incidence appears extremely high, given that the incidence reported in the literature for the U.S.  is estimated to be around 1.4 per 100,000 person-years. https://pubmed.ncbi.nlm.nih.gov/39496243/ 
  • Acquired Amegakaryocytic Thrombocytopenia (AAT). We understand that there have been some self-reported cases of AAT in the programs General Responder Cohort. While one case has been confirmed, the status of the other self-reported cases are unfortunately unknown.  Given that this condition has only been reported 100 times in the literature in the world, the presence of one case is worrisome and the confirmation of more than one case would indicate an astonishingly high rate. https://www.ncbi.nlm.nih.gov/books/NBK568795/ 
  • Angiomyolipoma of the Kidney. The overall incidence is about 5 cases per 1 million women. (Harknett EC, Chang WY, Byrnes S, Johnson J, Lazor R, Cohen MM, Gray B, Geiling S, Telford H, Tattersfield AE, Hubbard RB, Johnson SR. Use of variability in national and regional data to estimate the prevalence of lymphangioleiomyomatosis. QJM. 2011 Nov;104(11):971-9. ) This condition typically affects women of childbearing age. This has an 80/20 split impacting women more than men. Given that the WTC Health Program responder cohort is mostly men, the self-reported 28 cases of this condition would appear to be unusually high.  https://www.ncbi.nlm.nih.gov/books/NBK585104/ 
  • Acoustic neuroma and vestibular schwannoma. For this condition the reported prevalence is 3 to5 per 100,000 person-years. However, the incidence increases with age, reaching 21 per 100,000 person-years in those over 70.   We understand the programs responder cohort has 90 self-reported cases. https://www.ncbi.nlm.nih.gov/books/NBK562312/ 

Most importantly, if these conditions are shown to be elevated in frequency in this population, the program would need to alter clinical care and surveillance for the entire 9/11 community and that should be done as soon as possible if needed.

This ban needs to be immediately lifted so that the program can properly respond to and answer these important questions.  

Here is a copy of our August 8, 2025, letter to Secretary Kennedy.

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