WTC Health Program Symptoms: No Answers on New Conditions, Contracts in Limbo, Communications on ‘Hiatus’
Local leaders, activists, and elected officials are sounding the alarm about inaction and administrative chaos at the World Trade Center Health Program, which serves people made sick by toxic debris from the terrorist attacks of September 11, 2001.
“As a September 11 survivor, it feels like the very foundation of the Health Program is crumbling around us,” says Lower Manhattan resident Mariama James, who has acquired a reputation as a zealous advocate for services to people affected by the disaster. “The commitments made under the Zadroga Act,” the federal law establishing the Health Program, “such as regular Steering Committee meetings, the vital research into emerging illnesses, the promise of a properly staffed program, have been ignored.”
Benjamin Chevat, executive director of 911 Health Watch, a nonprofit that seeks to ensure the Federal government’s continued, long-term commitment to the health and well-being of September 11 responders, survivors and their families, says, “with the 24th observance of the September 11 attacks, eight months into the new administration, it’s time to call out Health and Human Services [HHS] Secretary Robert Kennedy’s chaotic record managing the World Trade Center Health Program – firing staff, rehiring staff, firing and rehiring its administrator, freezing research funds, enforcing a communications ban for the program, and keeping a hiring ban in place.”
Mr. Chevat continues, “all of these actions impact the September 11 responder and survivor community. It needs to stop. Secretary Kennedy must let the World Trade Center Health Program do its job. With the continuing, growing numbers of responders and survivors that have September 11 cancers approaching 50,000, with reports of emerging conditions with unexpected increased incidences among the program population, and his communications ban interfering with the program’s response, the Secretary needs to change course and acknowledge – as he did in May – that he has continued to make mistakes with the program.”
Among the concerns cited by critics are overdue responses to formal applications that would (if approved) add three conditions to the list of diseases covered by the WTC Health Program. Two applications, initially filed in February 2023, would expand coverage to autoimmune and cardiovascular conditions, and were slated for approval or rejection no later than March of this year. No answer has been received. A third application, filed last February, would add dementia to the roster of conditions. All three were developed (based on voluminous statistical evidence) by panels of medical experts affiliated with the WTC Health Program. In addition to these, four other usually rare conditions (Berger’s disease, acquired amegakaryocytic thrombocytopenia, angiomyolipoma of the kidney, and acoustic neuroma) have begun to occur within the survivor/responder communities at rates far in excess of what would be expected in the general population. But if the WTC Health Program is ignoring applications for new conditions, the prospects for research to verify a possible link to September 11 exposure, as well as for authorizing treatment for each, are remote.
A further criticism of the WTC Health Program’s administration under Secretary Kennedy is an apparent halt to research funding. “The program would normally have started in March to award millions of dollars of new research grants for the year, provided for under the Zadroga law, but March came and went with no action,” Mr. Chevat notes.
Amid the turmoil at HHS, Secretary Kennedy has announced plans to move the WTC Health Program into a new agency, the Administration for a Healthy America. In August, U.S. Senators Chuck Schumer and Kristen Gillibrand wrote to Mr. Kennedy, noting, “it is not clear from the information that the Department has provided what support will be available for the [WTC Health Program] in this new entity…. These issues directly impact the ability of the program to operate in accordance with the Zadroga statute and to deliver services to the community of sick responders and survivors living with health impacts resulting from the September 11 attacks.”
Senators Schumer and Gillibrand also cited concerns that “contracts for the World Trade Center Clinical Centers of Excellence, Health Program Data Centers, the National Program, administrative support contracts, and pharmacy benefit management will soon be up for renewal.” In this context, they noted, “as far as we know, there is no staff available to work on updating requirements and requests for proposals and there is insufficient staff to do the ongoing contract approvals the current contracts require. Unless this contract work can occur in a timely fashion, clinical care will be further impacted because providers will not be paid, and medications will not be filled.”
Exacerbating all of these anxieties is a communications embargo on the WTC Health Program imposed by Secretary Kennedy shortly after taking office, described as “a pause on mass communications and public appearances that are not directly related to emergencies or critical to preserving health… to allow the new team to set up a process for review and prioritization.”
Arguing that its effect has been to “shut down all communications between the September 11 community and the WTC Health Program,” Mr. Chevat says, “we don’t understand why this ‘pause’ is still in place. What is its purpose as it applies to the care that injured and ill September 11 responders receive? We believe that the work of the Health Program is being adversely impacted by this continuing ban on communications, and that it is impacting the health of over 140,000 responders and survivors who are in the program.”
Among the effects of this “pause” has been a nine-month hiatus in meetings of the Survivors Steering Committee, a panel of Lower Manhattan residents who act as advocates for the community and advisors to the WTC Health Program.
Kimberly Flynn, the director of 9/11 Environmental Action, a non-profit advocacy group whose mission is to ensure that those who were affected physically or emotionally by the attacks receive appropriate care, said the mission of the Steering Committee “is to provide meaningful input to the Health Program, so that the evolving September 11-related health needs of survivors can be better met. We can only participate in this work through a sustained dialogue with the leadership of the Health Program and with the leaders of the clinical centers that serve survivors. Now, for the first time since 2011, that dialogue has been abruptly cut off for no credible reason. We have no view into what is happening and we have no right to be heard. We are calling on the Secretary to end the hiatus and re-open the process which Congress envisioned in the Zadroga law.”
Ms. James, who is a member of the Steering Committee, says, “we’re left in the dark, without a voice, while our community continues to get sick. We still have no answers about whether our heart and autoimmune conditions will ever be covered, and now, as we head into winter, we’re being denied even basic protections like Covid and pneumonia vaccines. If Secretary Kennedy truly cares about public health, why is he allowing this to happen to the very people who need help the most?”
The population affected by turmoil in the WTC Health Program is considerable, with more than 140,000 people currently covered in all 50 states. In recent years, the number of people made sick and eventually killed by exposure to toxic debris from September 11 has surpassed the tally of people who died on that day, and the preponderance of newly diagnosed illness has shifted toward the survivor community (defined as those who lived, worked, or attended school or day care facilities within the eligibility zone during the specified time period), rather than first responders (such as fire and police personnel).
An HHS spokesperson did not respond to a request for comment for this story.