I realized there are a handful of folks who read this blog who have no idea what the World Trade Center Health Program (WTCHP) is, or why I'm part of it, so I figured I'd answer some questions and explain how I got here.
I was a 4th year medical student at NYU on September 11, 2001, when the Twin Towers fell. I was already signed up to start an elective at the Chief Medical Examiner's office in forensic pathology, doing autopsies on homicides, unknown causes of death, traumatic accidents, and routine things that forensic pathologists do. I could not have known that my month-long elective would turn into a body part/DNA recovery mission, working alongside DMORT (Disaster Mortality Rescue Team) volunteers from all over the country. We had tents set up outside the medical examiner's office, filled with rows of tables, surrounded by people who responded from around the country to feel useful in the wake of the tragedy.
For hours a day, all day, for a month, I helped sift through rubble from Ground Zero looking for shards of bone, knots of hair, teeth, or anything human (or animal) that could be tested for DNA. It was cleaned off, catalogued, and stored in a refrigerated truck until family member's could provide DNA samples for matching.
No one knew that inahling the debris would be dangerous. It never occurred to me that still smelling the remains of the pile on my clothes and in my hair when I got home every day would be a problem. As it turns out, it was a big problem. Responders, local residents, and survivors exposed to the pile began to get sick. When it became clear this was going to be a public health issue along with everything else, the World Trade Center Health Program was created.
The program only covers health care diagnoses that are attributed to 9/11, and you have to be certified as a responder or survivor (i.e. you have to prove you were there and exposed). With the help of the NYU medical school registrar and my 20 year old medical examiner's office ID badge, I was certified as a responder in 2022. This was after my first cancer diagnosis (breast cancer), when someone brought my attention to the link between 9/11 and cancer. Before that, I had never given another thought to the work I did there - but I am grateful this program exists.
They aren't an insurance program per se: they provide an annual exam to look for 9/11 related diagnoses, and cover a chest X-ray and colonoscopy because lung and colon cancers are covered conditions. They also cover care for conditions that are certified to be related to 9/11 so my breast cancer treatment was covered starting in 2022 (they didn't retroactively cover any of the treatment before that).
If you live in the NY area, WTCHP members can get care at one of several centers of excellence including NYU, Mt Sinai, and a few others. I don't know what this experience is like because I was already in Colorado when I applied, so I am part of the Nationwide Provider Network, not the Centers of Excellence.
It hasn't always been user friendly, and getting bills to go to the right place and get processed correctly has sometimes been a nightmare. WTCHP lives under the CDC, and RFK and Dodge have fired 25% of the staff and fired (then rehired) the program director Dr. John Howard. It's contracted out to a third party company that mostly does workman's compensation coverage, so the plan is neither easy to use nor easy to find providers willing to sign up. I have complained about it many times, and been frustrated with the pace and bureaucracy.
I owe them an enormous thank you and was incredibly impressed with how quickly they processed this new diagnosis of lymphoma. Within 48 hours of my pathology report being submitted, their committee reviewed it and certified it as a 9/11 related condition. This opens doors for me to get lymphoma care completely covered, without worrying about what my own insurance will cover, what state I'm in, co-pays, co-insurance, or other normal headaches of health insurance. My lymphoma care will be covered.
After developing 2 cancers by age 51 and knowing I wasn't born with the genes that caused them, it certainly seems like my work after 9/11 was a toxic exposure. There are responders and survivors being treated and diagnosed with 9/11 related conditions every day - our numbers and conditions are only getting bigger. We are grateful for the WTCHP, and the people who have ensured its continued funding and existence (Jon Stewart, Sen. Gillibrand, Rep. Garbino). The fact that we've had to fight to have the program funded while enduring the "Never Forget" 9/11 memorials every year has been a slap in the face to all of us who gave our time, our selves, and our very lives to serve.
So today I received the official certification of lymphoma as a 9/11 related diagnosis, and can now get financial clearance to get care anywhere in the nationwide provider network. Right now all signs are pointing us to MD Anderson in Houston, and I am grateful for how quickly this was processed, and for the opportunity to get the best possible chance at beating a second cancer.
Thank you to the certification committee at MCA/Sedgwick, and to my case manager Laura, and to the people who worked really hard to make this happen for me quickly. It's one less thing I have to stress about in an otherwise incredibly stressful situation.
