The Chicken-Egg Question about Long Island’s Breast Cancer Study

BY JOAN SWIRSKY

In the 1958 movie, “Gigi,” the characters played by Maurice Chevalier and Hermione Gingold reminisce about their first meeting.

That carriage ride. [You walked me home.] You lost a glove. [I lost a comb.] Ah yes! I remember it well.

That brilliant sky. [We had some rain.] Those Russian songs. [From sunny Spain.] Ah yes! I remember it well.

In addition to its charm, the song is a reminder of the fallibility of human memory and how what we understand as “the facts ma’am” is largely a function of subjective recollection. Yet, the accuracy of romantic interludes, except in divorce court, don’t rank among the more serious cases of factual misrepresentation.

The same is not true about historical milestones since it is only through the scrupulous and unbiased attention to and recording of time lines, participants and circumstances that current generations are informed and future generations gain perspective. Today, however, information is being distorted and perspective abandoned concerning the actual genesis of the National Cancer Institute’s 5-year, $26 million Long Island Breast Cancer Study Project (LIBCSP) that was started in 1996. Having just completed a book about the mapping projects that helped to inspire the NCI to set up shop in this region, the history of this unprecedented study is familiar to me. The long road that preceded the study began in the mid-1980s, when the late state senator, Michael Tully, Jr., first a member and then chairman of the health committee, began to enact some of the most important breast cancer legislation in the nation, including a law that mandated that doctors tell women all their treatment options when they were diagnosed with the disease.

In 1985, Jane Gitlin of Roslyn founded The Women’s Record, giving me free rein to address the epidemic nature of the disease in more than 200 articles. The same year, the first Long Island Breast Cancer Study was instituted and, the next year, Nassau County supervisor Thomas Gulotta mandated that every woman in the county be given a free mammogram, a program that still exists and is the only one of its kind in the country. In 1989, the Adelphi Breast Cancer Support Program, under the leadership of Barbara Balaban, veered into the political realm, obtaining a grant from Senator Tully for a statewide 1-800 hotline, traveling to Washington D.C. and Albany to lobby politicians for increased funding and legislation, and becoming the first home, in 1990, of Long Island’s first grassroots advocacy group: 1 in 9 – The Long Island Breast Cancer Action Coalition.

In 1991, the founders of 1 in 9, Marie Quinn and Fran Kritchek, sponsored a well-attended and well-publicized rally on the steps of the Nassau County courthouse. Among the attendees was the publisher of this publication, Networking®, who wasted no time in featuring what is now a decade’s worth of articles about breast cancer in just about every issue. Momentum continued to build in 1992, when West Islip breast cancer patient Lorraine Pace, believing she was living in a “cluster,” petitioned her doctor, the Suffolk County Health Commissioner, an epidemiologist at University Hospital Medical Center at Stony Brook, Good Samaritan Hospital Medical Center, Lou Grasso, managing editor of her local newspaper Suffolk Life, state senators Owen Johnson and Caesar Trunzo who provided a grant, and 17 friends and neighbors to help map the incidence of breast cancer in her community. They formed the West Islip Breast Cancer Coalition. In early 1993, Pace and other members of the West Islip Breast Cancer Coalition – including Ginny Regnante, Maria Diorio, Alex Chapman and Pat Nicols – presented the map to Suffolk County Executive Robert Gaffney and the newly established Suffolk County Breast Health Partnership under the chairmanship of Joan Hudson, Suffolk County Director of Women’s Services. In short order, Pace and the West Islip Breast Cancer Coalition received dozens of invitations from like-minded activists throughout the Island asking how to map their own communities. Karen Miller called from Huntington. Susan Roden called from the South Fork. Barbara Masry and Linda Ronn called from Great Neck. Ann and Antonio DeGrasse called from the North Fork. Elsa Ford called from Brentwood. Pat Smith and Betty Ann Innes called from Babylon. Kathy Hoenig and Joanne Gaffney called from Brookhaven. All of them, and many others, subsequently founded their own coalitions and mapping projects.

In October of 1993, many of Long Island’s breast cancer activists, now nationally recognized as leading the fight for the implementation of a national strategy to combat the disease, joined members of the National Breast Cancer Coalition and thousands of other advocates from around the country in Washington, D.C., to deliver 2.6 million signatures to President Clinton, who personally greeted several women from our region in the East Room of the White House. In November of 1993, a month before the West Islip mapping project was completed, Adelphi and 1 in 9, now led by Geri Barish, cosponsored a symposium: “Breast Cancer and the Environment – What We Know, What We Don’t Know, What We Need to Know.” Featuring international experts, the conference reinforced public perception that “something” in the air or water or soil was at least in part responsible for the escalating cancer rates on Long Island.

By this time, dozens of elected officials had made breast cancer a front-burner issue. When the activist coalitions, burgeoning in number, insisted on a comprehensive study on breast cancer and the environment, Senator Alfonse D’Amato led the charge in the Senate, petitioning the NCI to abandon its plans for a study in New Jersey in favor of an investigation of Long Island’s deadly problem. Throughout the arduous formulation of the multi-institution study, and after it was underway, Long Island’s breast cancer activists never rested. Diane Sackett Nannery of the U.S. Postal Service spearheaded the now-national pink-wristband policy to alert hospital personnel to the potential of breast surgery patients contracting lymphedema, and undertook a successful drive for the issuance of the first-ever Breast Cancer Awareness postage stamp. Geri Barish led 1 in 9 to raise over a million dollars for Cold Spring Harbor Laboratory’s research into the genetics of cancer. Sands Point philanthropist Tita Monti, founder of the Don Monti Memorial Research Foundation at North Shore University Hospital, continued her 29-year fundraising drumbeat for cancer research, and since 1997, the Carol M. Baldwin Breast Cancer Research Fund at University Hospital Medical Center at Stony Brook has been going strong. The Huntington Breast Cancer Action Coalition, under Karen Miller’s leadership, introduced a campaign to eliminate toxic chemicals and promote alternative ground-maintenance methods, as well as a breast-awareness training program for young women. Several coalitions, under the guidance of Stony Brook epidemiologist Roger Grimson, completed their mapping projects using the sophisticated GIS system. And Rick Shalvoy continues to take a week each summer to row around Long Island for breast cancer awareness.

The list of formidable accomplishments goes on and on, placing Long Island activists at the forefront of the fight against breast cancer. Their work has been stunning. For the first time in history, ordinary citizens have succeeded in mapping the cancer incidences in their communities and, yes, inspiring the most prominent medical institution in the world to take notice – and take action. In spite of many who were and are undergoing radiation and chemotherapy, they continue, to this day, to lick envelopes, attend rallies, meet with legislators, spearhead innovative programs and raise funds for research, map their towns and work with doctors, researchers and politicians for better treatments, better science, better laws and ultimately a cure. But in the name of accuracy, it is important to recognize that in bringing the LIBCSP to Long Island, it is the collective – and not unilateral – efforts of the activists and others that brought all of us a significant step closer to solving the mystery of breast cancer.

Joan Swirsky is a journalist and author or co-author of 10 books. She has just completed Map of Destiny: Pinpointing a Cancer Epidemic on the Kitchen Table.