Characteristics of survivors enrolled in the World Trade Center Health Program

Abstract

The World Trade Center (WTC) Health Program is a limited federal health care program that provides medical monitoring and treatment for WTC-related health conditions to responders and survivors impacted by the terrorist attacks on September 11, 2001.This study described the characteristics of the Program survivor members (who lived, worked, went to school, daycare or adult daycare or present in the New York City Disaster Area of 9/11/2001) to stimulate innovative ideas for improving healthcare services, generate new research interest, and serve as a reference for future research on this population. Administrative and medical claims data collected from the Program start date (07/01/2011) through 2022 were used. As of 12/31/2022, there were 37,384 enrolled survivors: 5.0% were aged ≤21 years on 9/11/2001, 45.9% females, and 31.2% non-Hispanic Whites. A total of 24,148 (64.6%) were certified for at least one WTC-related condition, including neoplasms (36.0%), aerodigestive disorders (35.6%) and mental health conditions (18.6%); 22.9% were certified for more than one category. Certification rates of some WTC-related conditions differed by sex, age and race/ethnicity. WTC survivor population is diverse in sex, age and race/ethnicity, with a high proportion certified for certain WTC-related health conditions, providing great opportunities for research in various areas.

Keywords: WTC survivors; WTC youth; WTC-related health conditions; World Trade Center Health Program.

Figure 1.

WTC Health Program Survivors by benefit category (screening eligible or certified eligible), as of 12/31/2022. Note: IHE, initial health evaluation. Screening-eligible Survivors include those who were enrolled after the Zadroga act (post-Zadroga members) and not certified for any WTC-related health conditions yet (with IHE or without IHE). Certified-eligible Survivors include Survivors enrolled before the Zadroga act (pre-Zadroga members) no matter certified or not and post-Zadroga members who had been certified for at least one WTC-related health condition

Figure 2.

Certification rate of selected WTC-related health conditions among Survivors as of 12/31/2022, by members’ sex (a), age on 9/11/2001 (b), and race/ethnicity (c). Note: error bars show the 95% confidence intervals estimated with Wald tests. Obstructive airway disease includes chronic obstructive pulmonary disease (new onset or WTC-exacerbated), asthma, chronic cough syndrome, chronic respiratory disorder and reactive airways dysfunction syndrome. Upper respiratory disease includes chronic laryngitis, chronic nasopharyngitis, chronic rhinosinusitis, and upper airway hyperreactivity.

Figure 3.

Top 10 certified cancer among Survivors as of 12/31/2022, by members’ sex. Note: The number and % show the number and percent of Survivors who have been certified for each cancer site; the denomination of the percentages are the total female Survivors (n = 17,162) for cancer among females and the total male Survivors (n = 20,222) for cancer among males. This figure only include cancer that are covered by the WTC Health Program as of 12/31/2022, excluding in situ, benign or unknown behavior neoplasms and non-melanoma of the skin cancer. Note that uterine cancer was added to the WTC condition list in 2023.

Figure 4.

Enrollment trends of Survivors by age group on 9/11/2001, 2011–2022 Note: figure (a) shows the number of Survivors of each age group on 9/11/2001 that enrolled in each year; these are the numerators for figure (b). The denominators for figure (b) are the total number of Survivors in each group enrolled in all years from 2011 through 2022, i.e. for each Survivor group, percents of all years from 2011 through 2022 add up to 100%.*In 2017, Department of Justice’s September 11th Victim Compensation Fund (VCF) started to require claimants to be certified by the Program. **Coronavirus disease 2019 (COVID-19) pandemic started in the U.S.A in 2020. These two events have been noted in figures for context, although analyzing the impact of these specific events is beyond the scope of the paper.

Figure 5.

Survivor membership and proportions of Survivors certified for selected WTC-related conditions by year during 2011–2022. Note: 1. Figure a included total Survivors in the measurement year. Those who were known to have deceased in previous year(s) were not included in the measurement year. 2. Figure b, the denominators for the percentages were the total number of Survivors in the measurement year as shown in Figure a, and the numerators were the numbers of Survivors certified for the selected condition in the same year as shown in Figure a. 3. Neoplasms were added to the WTC condition list in Oct 2012. Mental health conditions include PTSD, depression, adjustment disorder, anxiety and substance abuse. Obstructive airway diseases include asthma, chronic respiratory disorder – fumes/vapors, and WTC-exacerbated COPD. Upper respiratory diseases include sleep apnea, chronic rhinosinusitis, chronic nasopharyngitis, chronic laryngitis, and upper airway hyperreactivity.