In The Shadow of the Towers Documentary Photo courtesy of Ethan Moses
In The Shadow of the Towers Documentary Photo courtesy of Ethan Moses

INTERVIEW

Lila Nordstrom on StuyHealth’s Efforts

BY ALLIE WAXMAN

The public health advocate details how her organization works to benefit young people facing 9/11-related conditions and expresses her views on the causes of such conditions.

Stuyvesant alumna and founder of StuyHealth, Lila Nordstrom, discusses how her organization works to connect young people facing 9/11-related illnesses with the resources to which they’re entitled.

HBO: What is the mission of StuyHealth and why did you found it?

Lila Nordstrom: StuyHealth is the organization that I founded in 2006.As soon as news broke that first responders had started to fall ill with 9/11-linked conditions, I realized that Stuyvesant community members had had those same exposures and would likely fall ill with those same conditions. I thought it was really important that somebody do the work of advocating for this community and making sure that any resources that were available to the larger responder and survivor communities were also available to us.

HBO: Would you describe the population that benefits from your work? Who do you serve and what do you want them to know?

Lila Nordstrom: We work with the survivor population which is people that were members of the community after 9/11. There were about 20,000 public school students that returned to neighborhood schools at that time. Many of them were not residents of the neighborhood so there was no reason that they had to be down here; the school exposure was the critical factor in putting them at risk. We focus primarily on the younger range of that population, so anyone who was a child, a student at one of the New York City public schools or a student at one of the universities or colleges in the area. We would like them to know that there are federal health services that are available to them if they are sick with 9/11-related conditions. That includes both mental and physical health conditions. We make sure that they know that they deserve these services and we help them access them.

HBO: What are the organizations that StuyHealth partners with?

Lila Nordstrom: There are two primary programs we work with. One is the World Trade Center Health Program which is a monitoring and treatment program that treats survivors who are sick with 9/11-related conditions. There is a specific list of conditions that qualify you for this program. It’s an expansive list which includes everything from respiratory to gastrointestinal issues to mental health issues, to cancers. It’s a wide array of conditions. The second program is the Victim’s Compensation Fund, which is a program that provides financial compensation to people who are sick with physical conditions related to 9/11.

HBO: How did you come into this advocacy work?

Lila Nordstrom: I started StuyHealth in 2006 and it was largely related to broader federal health policy. It had a lot to do with the fact that this was before the affordable care act and there were just starting to be news reports that first responders were falling ill with illnesses directly linked to their exposures here. I was graduating from college, so I was about to lose my health insurance and I realized that there were a lot of states where students in our position would not be protected in the healthcare market because it would be legal to discriminate against people with preexisting conditions, and it would be legal for people who hadn’t had continuous coverage to be rejected from future coverage. I realized that exposures might get used against us in the future. With that in mind, I started a petition that basically said that students -- especially given that we were minors at the time of our return -- had no say in the decision to return [to school] too early. We now can acknowledge that it was too early. We deserve health coverage and treatment for these conditions without worrying that we’re not going to be able to access health insurance because of them.

HBO: How can viewers support those suffering from 9/11-related illnesses?

Lila Nordstrom: The first thing viewers can do is make sure they’re informed about these issues. There is a perception out there that this is a New York City-only issue. We actually have responders and survivors who are sick in all 50 states, in almost every congressional district. People don’t realize how extended a network of survivors there is and how that impacts outreach. We work with several organizations that viewers can help support the outreach efforts of, either by retweeting and sharing their appeals, or by supporting financially.

We want to make sure that viewers who are part of the survivor community have a way of getting this information. It’s important people are able to make the link between what they see in this film and why there would be health consequences to what these kids describe. They talk about the stench and the barge and the trauma of it all. The ongoing health crisis is a direct result of the situation the kids [in the film] describe. The cancer [film subject] Cathy Choy died of is one of more than 68 cancers that are linked to the attacks and covered by the World Trade Center health program.