Not Just Responders: 9/11 Health Crisis Broadens to Wall St and Beyond
9.11.10 by Claire Calladine
9/11 Health Now
When Brian Cosmello first heard the words You have leukemia in March of 2009, he didn’t make the connection to 9/11. Cosmello was 31, sitting in an office of the Duke University School of Medicine in Durham; NC, his wife, brother and mother by his side, facing a group of physicians. The family had been called to the medical center in extremis the day Cosmello’s blood work results came back, ordered due to recent bouts of fatigue and weight loss. “We got a 7 a.m. phone call at our house in Raleigh (NC),” Cosmello recounts. “They said we needed to come in right away.” Ensued an emergency bone marrow biopsy, in which Cosmello’s hip was drilled into to collect marrow for analysis.
Mind swirling from the diagnosis, Cosmello began fielding questions from the doctors: What is your profession? “Finance and investments.” Has this always been your profession? “Yes.” Where did you practice? “For the past seven years in Charlotte NC; before that, two years in the New York-New Jersey area.” Have you ever been exposed to radiation of any sort? “Excuse me?” Did your profession have you handling certain types of equipment or machinery that may have inadvertently exposed you to radiation or chemicals of any sort? “No. What? No!”
In all the chaos and mayhem, Cosmello felt lucky to be alive. Wandering the locked-down city with a fellow dust cloud victim for the next 24 hours, he finally escaped to his home in Hoboken and then resumed his professional life on the Stock Exchange on September 17th, 2001, when the city of New York pulled back the barricades and declared Wall St and Lower Manhattan open for business. “Everyone in the Financial District watched that cleanup and smelled that stench, day after day,” Cosmello recalls. “It didn’t look right, it didn’t feel right, but the official EPA word was that, horrific as it seemed, it was still safe to go down there.”
The biggest issue for Cosmello nowadays is the cost of the chemotherapy drug that he will be taking daily for the rest of his life. "The markup for a 30-day supply of Gleevec can be anywhere from $1500 to $4000 if not covered by insurance.” Cosmello says. “With insurance, there is a $25 copay that covers my monthly cost, but without health care coverage, there is no way we can afford an extra couple thousand dollars out of pocket a month for Gleevec." While Cosmello's body has responded well to his cancer treatment, it is the cost of care in the future that concerns him and his family.
The $7.4 billion bill would financially reimburse 9/11 victims for their illnesses and provide medical monitoring and treatment to an additional 25,000 responders and 25,000 “survivors” (area residents, office workers and students whose health was affected by the attacks) beyond the approximately 50,000 who are already enrolled in 9/11 programs. The House is expected to bring the bill back to the floor in late September, when it would require a traditional simple majority to pass.
Following are excerpts from a series of summer 2010 interviews with Cosmello, who has spent the past several weeks researching his options for care and coverage under the existing 9/11 health programs...
Interview with Brian Cosmello
Q: You recently looked into the current 9/11 health programs out there. What have you found?
BC: Well, I was initially advised to register with the World Trade Center (WTC) Health Registry, which has over 71,000 registrants, but when I attempted to do so, I was informed by director Jim Cone that the registry had closed in 2003-2004 and was no longer accepting applicants.
Q: That’s astonishing, given that vast numbers of the 9/11 community have fallen ill since 2003, and yet they can’t get ‘on the books’ as someone who was a victim of the disaster. Did you tell them you have leukemia and that you directly attribute it to 9/11?
BC: Yes I did. Leukemia, and the many forms of the disease, is still being researched to find possible causes of this type of cancer. To date, there hasn't been many definite findings, other than the studies that directly link radiation exposure to leukemia diagnosis. The only time in my life that I was exposed to radiation and other harmful carcinogens was during 9/11.
Mr. Cone emailed me that, to date, no association between leukemia and 9/11 exposure has been reported, but that the Registry is conducting its own cancer study to determine if there are elevated cases among enrollees. He also said similar studies were being conducted by the Fire Department of New York and the Mount Sinai School of Medicine. I fully expect to hear of more cases of blood cancer victims, as well as other types of cancer, as these studies progress.
Q: So who else did you contact?
Q: So they have no programs for people living outside the area?
BC: Apparently not at this time.
Q: What about LHI--Logistics Health Inc., the so-called ‘National’ 9/11 responder network?
BC: I spoke with LHI’s medical director Dr. David Tornberg, who relayed me to caseworker Nancy. Nancy advised me to contact WTC Environmental (see above). She also put me in touch with the WTC “National Responders” group that gets 9/11 health claims processed through LHI. However, this group told me that I was not LHI-eligible because I am a non-responder. They then suggested I call the New York State Occupational Health Clinic Network, which I did.
Q: Any luck?
BC: Unfortunately not; this network doesn’t treat victims outside of the NYC area either. I also contacted NIOSH (the National Institute of Occupational Safety & Health), but they didn't have any current programs for people in my situation. Apparently there were some exploratory programs for non-responder victims who live outside the greater NY area, but because of funding issues, there hasn't been much headway.
Q: So the upshot of your findings is...
BC: Well, basically what I have found is that there are no programs or support systems for people like me at this time. Local business workers and residents near the 9/11 site who no longer live in that area and are experiencing health problems linked to their exposure do not have programs available to them.
Q: None at all?
BC: Apparently not. Even though we are coming up on the 9th anniversary of the 9/11 tragedy, I would think that there are many people in my same situation who have moved from the NYC area and are experiencing 9/11 health issues. Who knows what problems they are facing? They may be experiencing health complications and may not even realize that their exposure from 9/11 years ago can be directly attributable to their current or future health crisis. I surely didn't.
Q: Have you heard about the pending 9/11 Health bill, the James Zadroga 9/11 Health & Compensation Act?
BC: Yes, and when I was calling around to the various 9/11 programs, I asked about how to go about getting registered for benefits under the bill if it passes. Nobody could give me any information about how to do that.
Q: You do know that even if the bill passes, leukemia and other cancers are not on the list of covered conditions under the current bill language?
BC: Yes, I’ve been told the eligibility for health care and monitoring thus far has been limited to certain diseases and conditions. But I’ve also been told that special cases may be considered for coverage if strong 9/11 causality is proven. I think I have a strong case.
Q: Will your Duke physicians back you up?
BC: I hope so! Like I said, Leukemia is still being researched to find more information on possible cause and effect. At this point, there is still a lot to learn about the disease. And while it may be difficult to pinpoint the exact cause of Leukemia in any cancer patient, there is an overwhelming correlation in my past between the toxicity of the 9/11 site, my repeated exposure to the carcinogenic air on the day of 9/11 and the many months following, the latency period for Leukemia (which is generally 7-12 years after exposure), and my diagnosis with Chronic Myelogenous Leukemia in March of 2009, almost eight years after the 9/11 tragedy, combined with no other possible causes or triggers of cancer in my past. I feel that my doctors and many others around the country would likely attribute my condition to my 9/11 exposure.
Q: What’s your biggest concern right now?
BC: Well, right now, I have health coverage until mid-2011 and my body feels good and is responding well to treatment, but since I lost my job and there is no telling how my leukemia will respond in the future, I'm worried about my continued health benefits and financial stability going forward. As regards to the 9/11 health bill, I need to know how to register for it, so that if it passes, my family and I can benefit. This is of vital concern to me.
Q: What if the bill does not pass?
BC: One, I may have to come to the realization that there might never be programs for individuals like me, who were directly affected by 9/11 and who no longer live in the New York City area. There might never be programs that ensure that health victims are monitored and guaranteed coverage, even if they no longer live locally (which I believe to be many people, and will only continue to grow). And two, I'm going to continue to put my best foot forward and try to secure employment and health benefits, so that my family will be financially supported, and more importantly, will be covered under a health plan. If our government officials aren't going to provide health programs for people like myself and the many others out there, then I need to find the answers myself.
2010 Story and interview by Claire Calladine, co-founder, 9/11 Health Now.
Postscript: The James Zadroga 9/11 Health and Compensation Act was passed on 12.22.10 and signed into law by President Barack Obama on 1.2.11. However, the bill did not include coverage of cancers, including the CML leukemia Brian Cosmello suffers from, in spite of a review by a scientific committee in the spring of 2011. On July 26, 2011, Brian wrote an open letter objecting to this ruling to Dr. John Howard of NIOSH, administrator of the 9/11 Health programs under the bill. In April of 2012, the WTC-STAC recommended to Dr. Howard and NIOSH that a list of cancers be added to the bill, including leukemia. Dr. Howard and NIOSH are expected to rule on the decision by June 2012.
