The rejection of uterine cancer from the list of covered World Trade Center cancers is being cited by women’s-health advocates as evidence of a glaring gap in the WTC Health Program’s data and research, which is skewed to male subjects by almost four to one.
The designation of a cancer or other disease as a World Trade Center-related condition entitles patients to free health care through the WTC Health Program and financial compensation under the 9/11 Victim Compensation Fund.
‘Not Sufficient Evidence’
In a notice in the Sept. 24 Federal Register, the Office of the World Trade Center Health Administrator provided public notice that after a review of “the scientific and medical literature, including information provided by the petitioner,” there was not sufficient evidence to add “uterine cancer, including its subtype, endometrial cancer, to the list.”
Under the WTC Health Program’s guidelines, 90,000 first-responders who were at the Trade Center site from 9/11 through the end of the clean-up in May 2002 are entitled to free annual screening. So far that cohort includes 64,408 men and 9,036 women, according to the program’s website.
Of the 400,000 potential survivors—people who lived, worked or attended school and were exposed to WTC contamination—there are 10,979 men and 10,375 women in the WTC Health Program. Unlike first responders, survivors must first be symptomatic to avail themselves of the program.
To date, the program has confirmed a WTC link for almost 70 different cancers.
Don’t Know They’re Eligible
“The one hopeful thing is that there is a system in place to add additional diseases,” said Michael Barasch, a leading WTC attorney. “Unfortunately, they are reliant on the WTC Health Program, which has so few women in it because they are not aware they can be eligible.”
He noted that in 2013, cervical and ovarian cancers were added to the WTC list.
“This is a two-fold issue. So far there’s not been sufficient data linking exposure to the WTC dust and women who have contracted uterine cancer, which speaks to the need of doing more investigating when it comes to the health impacts on women,” said Dr. Jacqueline Moline, director of the Northwell Health Queens World Trade Center Program for 9/11.
She continued, “The answer will come as we increasingly look to the survivor population, which by its nature is more representative of the gender split we find in the general population than with the predominately male first-responder cohort.”
Women Responders Neglected?
In the years since the World Trade Center attack, the health status of the first-responder cohort has been closely screened and monitored because of their high percentage of participation in the WTC Health Program.
Yet, 9/11 female first-responders maintain, there’s not enough attention being paid to the impact on women of the contamination from prolonged exposure to toxic substances at the site.
And as a consequence, they argue, the bar can be higher for them when it comes to proving a connection to their ailments and that exposure, as well as in getting the benefits their similarly situated male colleagues get.
“If I am doing this [medical] investigation and we are using men as our research subjects and then think we will apply that [research] to women, that’s a medical problem. That’s a scientific problem that has affected women’s medical treatment across the general population that is particularly acute in the emergency services,” said retired FDNY Capt. Brenda Berkman, who served at the WTC site from 9/11 until the clean-up was completed.
‘Won’t Focus on 1% Subset’
She continued, “When you think about it, if the scientists are missing the general population of women, who are more than 50 percent of people on the earth, what makes you think they will focus on a subset who in the case of the Fire Department are less than 1 percent?”
On 9/11 Court Lieut. Angela Shirlaw was in the locker room at 100 Centre St. getting ready for work when the first plane hit. After she and her colleagues evacuated the courts, they were detailed to the World Trade Center.
In August 2017, she was diagnosed with an aggressive form of breast cancer that the WTC Health Program certified as 9/11-related. Last year, she had a bilateral mastectomy and was diagnosed with polyneuropathy, a side effect of her treatment that was also certified as a WTC condition.
She has encountered resistance from her own agency, the Office of Court Administration, which initially refused to honor a state law that required it to restore the 855 hours of sick time she had accumulated over her 20-year career and used to get the treatment she needed.
‘Look at Survivor Stats’
The veteran court officer believes that for female 9/11 first-responders, the key to closing the data gap is for there to be more engagement with WTC survivors, most of whom are not on the WTC Health Program’s radar.
“I don’t think that I am saying as a woman, please look at the first-responder statistics. I think we should be saying as human beings, let’s look holistically… at the tremendous amount of people in that exposed area. Why are we only looking at this one smaller group of people? As first-responders we’re not really super-heroes that have special powers. Average people were exposed to the same dust as we were, and we are failing to look at that.”
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