I have not often made reference in these articles to studies in which I participated, but one such study, the Long Island Breast Cancer Study, was a large important one that has much to teach us about breast cancer, the methodology of epidemiologic studies and about research politics. Therefore, I will take the liberty of describing it in some degree of detail. Since I was one of its leaders and am thus familiar with most of its details, I can speak first-hand about its conduct.
The origins of the concerns about cancer on Long Island stemmed from studies conducted both by New York State and by the federal government. A New York State Department of Health study for 1988-1992 showed an annual breast cancer incidence rate of 137.8/100,000 for Nassau County and 133.0/100,000 for Suffolk County versus an average of 121.8/100,000 for New York State overall. The federal data was consistent with these findings. Indeed, they found that the Northeast in general had higher breast cancer rates than the rest of the country.
The women on Long Island were already somehow aware of these prevalent high rates of breast cancer and concerned about them. In response, they formed advocacy groups and met to discuss how to address these rates. In particular, the recent publication at that time of Rachel Carson’s book “Silent Spring” had aroused considerable concern about the effects of environmental chemical exposures and their impact on cancer. Long Island had been primarily farmland prior to World War II, and pesticides, including significant use of DDT and related pesticides, had been extensively utilized. In the aftermath of the War, this farmland was rapidly converted to the suburban housing with which we are now all familiar, so the women’s groups argued that the residual toxins continued to play some role on the health of the area’s residents.
Additionally, in the aftermath of the Vietnam War and the use of Agent Orange, which consisted primarily of DDT, and the outcries raised about its effects on U.S. personnel as well as Vietnamese civilians, these concerns were only amplified. (I would note in passing that I was a member of the committee that the Veteran’s Administration created to evaluate the health effects of Agent Orange on Vietnam veterans, and I chaired its cancer subcommittee.)
Demonstrations were held at city halls and congressional offices to demand governmental action. Newsday, the Long Island newspaper, covered this extensively and made it a major cause celebre. Ultimately, the politician who took it most to heart was Senator Alfonse D’Amato, the senior senator from New York, who sponsored a bill in Congress that provided funds in 1993 for the conduction of studies to determine the environmental causes of the high rates of breast cancer in the tri-state area. Several small studies were funded, but the central study was required to be a case-control study that would focus on investigating environmental causes of breast cancer. And only investigators from the tri-state area were eligible to compete for this grant.
While many institutions nowadays have exemplary departments of epidemiology, at the time we are discussing I think it would be fair to say that my own department at Columbia was the leading one in New York City. (Yale was the closest competitor.) I thought that, rather than compete with the other schools in the area, in order for us to get our hands on the money, we should invite all the other schools to collaborate with us and thus give everyone a piece of the pie. And that is exactly how it played out. I asked my colleague Marilie Gammon, a breast cancer expert, to lead the study (I was a GI cancer authority and would not have been taken as seriously), and almost every other school became a collaborator—Mt. Sinai, NYU, Einstein, Cornell, Sloan Kettering, Downstate, SUNY Stony Brook, Rutgers and the American Health Foundation. And so in 1995, we were awarded a $6.3 million grant; this was back in the days when a million dollars still counted for something.
Dr. Gammon earned her undergraduate degree from UC Berkeley and then went on to a master’s degree in Epidemiology from the University of Washington and a PhD in Epidemiology from Yale. She led our study while I, because of my clinical knowledge, served as the clinical expert and also as the liaison to all the participating hospitals and clinicians. The third member of our leadership team was Regina Santella, parenthetically another resident of Teaneck, a brilliant lab scientist who had earned her PhD and done her postdoc in the same lab at Columbia under Dr. Bernie Weinstein, where I worked during medical school, and oversaw the collection, analysis and storage of biological specimens.
The women’s groups who had advocated for the funding of this study continued to serve as oversight committees and we were compelled to report to them on a regular basis. They proved to be considerably more demanding and burdensome than any supervisory committee that NIH or NIEHS ever created over us.
Alfred I. Neugut, MD, PhD, is a medical oncologist and cancer epidemiologist at Columbia University Irving Medical Center/New York Presbyterian and Mailman School of Public Health in New York. Email: [email protected].
This article is for educational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment, and does not constitute medical or other professional advice. Always seek the advice of your qualified health provider with any questions you may have regarding a medical condition or treatment.
