20 years after 9/11: Through a public health lens

If you’re like me, you’ve been completely engaged with 9/11 documentaries, stories, and conversations this week. A horrific event that shaped our lives, culture, international relations, and … health.

In the initial attack, 2,996 died: 265 on four planes (including terrorists), 2,606 in the World Trade Center and surrounding area (including 343 firefighters, 71 police officers) and 125 at the Pentagon.

But, with any national disaster, whether it be intentional (9/11) or unintentional (COVID-19, Hurricane Ida), the public health impact extends beyond the initial event and beyond death. After the attacks, approximately 400,000 people were exposed to environmental toxins and hazardous materials because of a massive outdoor cloud of dust and debris, indoor dust, and fumes. This causes a ripple effect of physical and mental health problems for survivors in the decades to come.

In this Sept. 11, 2001 file photo, a man coated with dust and debris from the collapse of the World Trade Center south tower coughs near City Hall, in New York. Two decades after the twin towers' collapse, people are still coming forward to report illnesses that might be related to the attacks. AMY SANCETTA/AP

World Trade Center (WTC) Health Registry

Months following 9/11, public health experts set up the World Trade Center (WTC) Health Registry as part of a larger effort called the WTC Health Program. Broadly, the program…

“…provides medically necessary monitoring and treatment for certified WTC-related health conditions. The Program also covers medically associated conditions, which are conditions that result from the treatment or progression of a certified condition”.

The Registry is a database meant to document the short- and long-term effects of 9/11 from people on the ground. The registry is a voluntary program for responders (i.e., persons who were involved in rescue, response, recovery, cleanup, and related support activities after the September 11, 2001, terrorist attacks) and survivors (i.e., persons who were present in the dust or dust cloud on 9/11 or who worked, lived, or attended school, child care centers, or adult day care centers in the NYC disaster areas”).

More than 104,000 people (76,543 responders and 27,680 survivors) have joined and have, thus far, been interviewed five times: 2002, 2007, 2011, 2015, and 2020. This longitudinal perspective is incredibly important to gain a comprehensive understanding of the morbidity associated with 9/11.

Long-term impact of 9/11

This week the CDC published a sweeping study providing a high-level view of the health of 9/11 responders and survivors. The CDC particularly assessed over 100 “covered conditions”, all of which have been linked to the environmental disaster of 9/11.

What did they find?

• 58% of participants have at least one certified health condition; and this rate is increasing. Many participants have more than one certified health condition. The average participant in the study has 2.7 health conditions linked to 9/11.

• Among survivors, 13% had a cancer certification. The top five cancer conditions were 1) skin cancer, 2) male genital system cancers, 3) in situ neoplasms, 4) breast cancer, and 5) digestive system cancers.

• 20% had a noncancer certification. The top five noncancer conditions were 1) upper respiratory disease, 2) gastroesophageal reflux disorder, 3) obstructive airway disease, 4) posttraumatic stress disorder (PTSD), and 5) depression

Other studies too…

There are over 200 peer-reviewed articles regarding more detailed analyses of the health impact of 9/11, which can be found here. But, briefly, people in the registry were/are more likely to have:

• Lung damage (asthma, indoor allergens and airway hyperactivity, pulmonary fibrosis)

• Autoimmune disease (called sarcoidosis, basically when your immune system mistakenly attacks your own body)

• Brain conditions (peripheral neuropathy; think prickling, burning or aching pain in the limbs)

• Cancer (and specifically thyroid cancer)

• Mental health disorders (PTSD, cognitive impairment, memory loss)

• Lower quality of life (early retirement, poor quality of sleep)

We’ve also leveraged this data to assess the impact of unmet health care needs, how we can better prepare for future disasters, how surviving multiple disasters (like people who survived Hurricane Sandy and 9/11) impact PTSD, and how we can plan better for disasters (what equipment do we need).

So, what can we do from a public health perspective?

First, many, many people don’t know they’re eligible for the World Trade Center Health Program. Many are eligible including:

• 360,000 building occupants and others in the area

• 91,000 rescue/recovery workers and volunteers

• 57,00 residents south of Canal street

• 15,000 children and staff in schools south of Canal street

For example, a violinist was eligible for this program. She played for rescue and recovery workers during their breaks from draining daily work at ground zero. She volunteered for months, and her time at ground zero greatly contributed to her lung cancer diagnosis. So, if you were in this area on 9/11 or know of someone who was, please check out World Trade Center Registry here. This is an eligibility map used to determine enrollment:

New York City response area used to determine enrollment eligibility for responders to the 9/11 attacks — World Trade Center Health Program

Second, we need to continue to fund this research (which is currently funded by the state of NY and CDC). The data from this has been used to:

1. Help participants make informed decisions about their own health;

2. Provide health researchers with information on what may happen in future disasters;

3. Help doctors who may treat people affected by 9/11; and,

4. Understand gaps in healthcare.

Love, YLE