I was very honored when Rhonda Samuel, the President of the Long Island Board of Managers of Cancer Care of Long Island, invited me to speak at this luncheon in honor of the women I personally have always honored as the founding mothers of the most powerful group of advocates in the entire United States. When I think about the amazing accomplishments of Long Island’s grassroots breast cancer warriors, the first thing that comes to mind is what the women in this room and their colleagues have done to change the landscape that existed a mere decade or two ago.

Today, in 2002:
1. The importance of funding for breast cancer research is on the front burner of public consciousness.
2. The importance of the political process and of the active involvement of politicians in the fight against breast cancer is on the front burner.
3. The importance of environmental awareness and of protecting the public against the carcinogens and the other deadly substances that surround us is on the front burner.
4. The importance – and even the promise – of finding a cure for breast cancer is on the front burner.
5. The importance of genes and their implication in the genesis of some breast cancers is now on the front burner.
6. The importance of both individual and collaborative efforts in the fight against breast cancer is on the front burner.
7. The importance of women believing in their power to change things for the better is now on the front burner.

In very real ways, they and the people they have inspired have come out of a long dark tunnel – that once appeared to have no end – into the light of hope. Not in the light of a cure or even of sure-fire treatments. Not in the light of definitive studies that offer answers or even of revolutionary theories. And not in the light of plain, oldfashioned healthcare, which in many ways is even more impersonal and cold than it was even a decade ago.

And while too many women are still in that dark tunnel of anxiety and fear, of not knowing and not trusting, of wondering and worrying, they are no longer at the beginning of the tunnel – a day when their daughters and granddaughters will be able to talk about breast cancer in the past tense. As all of you know, that light, no matter how dim or flickering it may seem at times, didn’t happen overnight. The struggles of the Long Island advocates had precedence in a history that, if anything, confirms that what they’ve been fighting for is valid.

As far back as the mid-1940’s – a decade in which many of the people here today were born – Long Island was primarily a farming community. But when thousands upon thousands of servicemen came back from World War II, the lure of affordable housing was irresistible. And it was not long before major aerospace and other industries followed and with them millions upon millions of tons of waste byproducts that permeated the soil and inevitably found their way into the water system.

During these years, children ran playfully after the fog trucks that sprayed DDT to kill mosquitoes and laughed when they got lost in the pesticide’s dust clouds. The “miracle chemical” was sprayed on vegetables that were served each evening at the dinner table, on cattle from which steaks, roasts, and hamburgers were made, on cotton that became articles of clothing, and on children themselves to so-called prevent the “blight” of polio.Over the next couple of decades, the population of Nassau and Suffolk counties nearly tripled. In the 1960’s, the national incidence of breast cancer was 1 in 20. Long Island activists were already lodging lawsuits against a huge federal- and state-directed spray campaign of DDT to eradicate the Gypsy moth. Nearly four hundred thousand gallons of the chemical were sprayed on Long Island, four times the amount than was sprayed in neighboring areas like Queens or Westchester County.

Four years later, Rachel Carson, the trailblazing author of Silent Spring and a breast cancer patient herself, described the fatal effects that pesticides – including DDT – had on birds, fiddler crabs and, she suspected, human beings.

In 1972, DDT was banned nationally, but the ban did nothing to stop the chemical’s breakdown products, such as DDE, from continuing to contaminate the environment and be increasingly implicated in human ills. These were the years in which plastic products were developed and proliferated in industry and household use, spewing forth invisible and toxic PCBs that when carried on the wind found their way to wildlife, snow, human skin and even breast milk.

These were the years in which radiation, “the miracle treatment” was used routinely – in high and unregulated doses – on everything from acne to the thymus glands of thousands of babies, many of them female. And these were the years when doctors advertised their favorite brand of cigarette on TV.

Indeed, these were the years when there was simply no association between human health and environmental toxins. We now know that environmental hazards exists throughout the country. But on Long Island, unlike other parts of the country, there is no getting rid of them. Since Long Island is unique in having a sole-source aquifer, once the contaminants reach the water supply, they stay there – decade after decade after decade.

The first was brought about by the incredible efforts of a young housewife with two young children who lived in upstate New York. Lois Gibbs, suspecting that the near-epidemic of neurological conditions, miscarriages, and cancers were not “coincidental,” as state and medical authorities continued to claim, went door to door collecting data and with a journalist to document her work, insisted that the toxic plume from the Hooker Chemical Company that ran underneath the town’s public school was poisoning the residents of Love Canal.

Finally, in 1979 – without admitting any culpability – the state agreed to relocate all the residents of the community. But Lois Gibbs’ activism had inflamed the imagination of the public and encouraged untold numbers of community activists throughout the country to take matters into their own hands.

The second thing that happened in 1979 came about because Dr. Andre Varma, professor of community and preventive medicine at Stony Brook, became alarmed by the rising breast cancer incidence on Long Island and concerned that nothing was being done to study the phenomenon. That same year, he wrote a grant and applied for funding for a study. But he told me that it took several more years – because of the difficulty of coordinating with various agencies and dealing with the clashing egos of the participants – before the study got off the ground.

In 1981, Leah Lauter, an associate professor at the Adelphi School of Social Work, realized that women with breast cancer had no place to go for support or information. Reaching out to area hospitals for referrals, she instituted the first breast cancer support group at the university. After five years, as the groups expanded to include husbands and children, the program had 59 volunteers and had served 3,000 women. The volunteers also instituted a regional hotline. Interestingly, the hotline was initially called the Woman-to-Woman hotline because the word “breast” and certainly the words “breast cancer” were still not spoken in public.Mrs. Lauter worked closely with the late – and powerful – State Senator Michael Tully to have insurance companies cover the cost of mammography and to enact legislation that insured that women were told all of their alternatives before choosing a particular treatment. And in 1988, she wrote a proposal for a statewide hotline, which became a reality in 1990, a year after she retired.

In 1984, a small article in Newsday reported on breast cancer incidence in Long Island. It stated that “in Nassau County, the rate was 112.6 cases per one hundred thousand women per year, or 18.9 percent above the state average; and in Suffolk County the rate was 103.6 cases per one hundred thousand women per year, or 9.4 percent above the state average.” In short, the incidence of breast cancer in both Nassau and Suffolk Counties was significantly higher than it was throughout the state, or in neighboring Queens or in nearby Westchester County, which has a demographic profile strikingly similar to Long Island.

That same year, Jane Gitlin founded The Women’s Record. Although the paper had a relatively small circulation, its mailing list included all of Long Island’s shakers and movers: politicians, educators, physicians, and business people. My assignment was to find out what the breast cancer problem was all about.

But from the outset, it was clear that the people from the county and state health departments who I believed were in the position to give me answers either couldn’t or didn’t want to. And the doctors I spoke with seemed completely at a loss to explain the great number of women they were seeing with breast cancer.

The lack of answers I was getting enraged me – but luckily I’m mobilized by rage! I realized that the solitary article I was assigned would be insufficient to cover what needed to be covered, not only the clinical aspects of breast cancer but also the environmental, political, legislative, legal, economic and emotional aspects as well. I ended up writing an eight-part series and, over the next many years, hundreds of other articles.

Luckily, Jane allowed me to engage in advocacy journalism, challenging the design of the New York State study and the sluggishness with which the researchers released their findings, the apathy of politicians, the neglect of environmental issues and the patronizing medical policies that made women the very last people to participate in their own health care!

But there was also good news. Senator Tully, as chairman of the state health department, continued fighting and legislating for Long Island’s breast cancer patients and former Nassau 6 History of Breast Cancer Advocacy continued from County Executive Thomas J. Gulotta mandated that every women in the county be given a free mammogram, a program that still exists and is the only one of its kind in the country.

State Senators Tom DiNapoli and the late Norman Levy were also among the earliest on board, fighting alongside the advocates for better legislation and funding for important projects.

In 1989, Barbara Balaban took over the directorship of the Adelphi Breast Cancer Support Group and Hotline. Barbara, who is in Seattle today attending a breast cancer forum, was a social worker by education but a powerful and effective political activist by conviction and experience. At Adelphi, she immediately began making trips to Albany and addressing the inequities between the treatment of white women and African American and Latina women. As all of you know, her advocacy has never flagged.

One day, about a year or so after Barbara took the reins, a young woman named Marie Quinn met with her to say that she was receiving the same treatment for breast cancer that her mother had received the 20 years before. “We have to do something!” Marie said. “I want to make this political!.” Within weeks, a meeting was set up to discuss the possibility. Out of that meeting came plans for the first-ever breast cancer rally to be held in front of the Nassau County Courthouse, and also the establishment of the first-ever political action breast cancer group on Long Island, 1 in 9, which was founded by Marie Quinn and Fran Kritchek and formally instituted in November of 1990.

The same year, a press conference was held at Stony Brook, announcing the results of the twiceredesigned Long Island Breast Cancer Study. Dr. Philip Nasca of the state health department told the audience that environmental factors had been ruled out and that no further studies would be undertaken.

His findings didn’t sit well with Faith Larsen, a breast cancer survivor and the owner of Merrick Life and three other South Shore newspapers, nor with her daughter, Linda Toscano, Merrick Life’s publisher, who had reported widely on breast cancer and had published a lengthy questionnaire in the newspaper that revealed “hot spots” of the disease in both residential and work places.

What Dr. Nasca and others involved in the study hadn’t counted on was the outrage his report engendered. And when Mrs. Larsen and Linda Toscano, among many others, as well as the full force of the newly instituted 1 in 9, took action – under the dedicated and determined leadership of Geri Barish – and demanded a new study, the powers-that-be knew they were witnessing an unprecedented phenomenon: Women NOT accepting what was clearly unacceptable!

The following year, in 1992, Lorraine Pace, a West Islip resident, got breast cancer, and when she was walking around her neighborhood recovering from her radiation and chemotherapy treatments, she met 20 other women in an eight-block radius who had breast cancer.

About the same time, she attended a hearing on breast cancer that was sponsored by Senator Alfonse D’Amato, who had begun to demand – at the urging of the activists – federal intervention to review the conclusions of the Long Island Breast Cancer Study. I was at that meeting and I’ll never forget Harriett Orenstein, the Director of Cancer Care of Long Island at that time, stand up to address the panel of experts from the Centers for Disease Control.

“Women want to know,” she said, “Why me? Why now? Why on Long Island? And Why in certain pockets of Long Island?” Lorraine suspected that she was living in a hot spot of cancer and wanted answers to the same questions. She appealed to her oncologist to design a study to be distributed throughout her community, asked the public-relations person at Good Samaritan Hospital to help with the publicity, asked the county health commissioner for help 7 History of Breast Cancer Advocacy and enlisted the assistance of the editor and publisher of her community’s newspaper to publish the study on the front page. In addition, she contacted Dr. Roger Grimson, an epidemiologist at Stony Brook, to analyze the data and finally, enlisted 17 amazing and selfless women to collect the surveys and, over a period of two years, earmark their results on a map on her kitchen table. That group of women became the second activist group on Long Island, The West Islip Breast Cancer Coalition.

Some of the early activists had been members of the Adelphi support group and volunteer hotline, others had moved to 1 in 9 to get more politically involved. But these were women with communities of their own, priorities of their own and with their own original ideas.

Again, it was not long before Barbara Masry and Linda Ronn established a Great Neck coalition and before other coalitions were established in Huntington, Babylon, Brentwood-Bay Shore, Long Beach, The South Fork, the Town of Islip and, eventually, in over 20 communities on Long Island.

It was still in the early to mid-90’s when this formidable force of advocates was routinely traveling to Albany and to Washington to lobby for increased research funding, better legislation and, yes, a NEW study that would address the possible relationship between breast cancer and the environment. The results – and success – of their lengthy and arduous efforts are well known, and I very much look forward to hearing from Dr. Marilee Gammon today about what lies ahead in the areas of breast cancer research.

During these years, while each group provided support to women of their communities and also engaged in political action, each group also found its own focus. 1 in 9 concentrated on raising funds for genetic research at the Cold Spring Harbor Laboratory and in establishing Hewlett House, a resource center for women with breast cancer and their families, and Michael’s Haven for children with cancer and their families.

Huntington began a huge mapping project of 68,000 residents, and initiated and “I Am Fed Naturally” lawn flag campaign that encourages homeowners to eliminate toxic chemicals on their property and promotes alternative methods to ground maintenance. Huntington also started B.A.T, a breast-awareness training program for young women. And Karen Miller was only one of two women (the other was Martha Rogers from the South Fork Breast Health Coalition) that the NCI selected from Long Island to be a Peer Reviewer Community Representative for its study.

Elsa Ford from the Brentwood-Bay Shore coalition became the recognized and respected science expert to whom everyone always turned for a cogent explanation of what the disease and the environment were all about.

Ginny Regnante from the West Islip Coalition has been an advocate from the very beginning , asking all the right questions and insisting on nothing less than straight answers.

Dr. Virginia Maurer gave up a successful general practice several years ago to concentrate solely on breast care and the women of Long Island who know and respect her are very happy that she did.

Dianne Sackett Nannery, who was diagnosed with breast cancer and then lymphedema in the mid-90’s was also an original thinker, first imagining and them implementing a pink-wrist band policy that is now accepted nationwide as a way to alert breast cancer patients to post-op procedures that may lead to lymphedema, as well as initiating the first-ever Breast Cancer Awareness postage stamp and collaborating with me on a book about lymphedema.

Debbie Basile, Patricia Spicer, Jodi Hollingshead, Joyce Smolkin, Wilma Carroll, Victoria White – all are the heroines of Long Island’s breast cancer advocacy movement and all of our region’s women owe them a debt of thanks for their tireless work.

In the late 90’s Hillary Rutter became the Director of the Adelphi support program and statewide hotline and everyone knows of her wonderful work, along with Cancer Care, in establishing Sisters United in Health, an outreach program to Latina and Afro-American women, and for her outreach to teens and young women on both state and national levels.

And I can’t omit many of the women who where “there” from the beginning. Ellen Troisi from Nassau County; Dee McCabe from the American Cancer Society; Melba Tolliver, the national and local news broadcaster and journalist; Eve Boden, a registered nurse who was on the educational board of Adelphi’s first Hotline; Minna Barrett and Louise Levine from 1 in 9, Sandi Kafenbaum of Adelphi, Chris Conniff Sheahan, the editor and publisher of Networking magazine, the list goes on and on and on.

But that is a drop in the proverbial bucket of the many, many thousands of women on Long Island – including the women in this room today – who have managed – heroically – to cope with the frightening diagnosis of breast cancer, to make impossible decisions about treatment, to have to raise their kids and maintain their marriages and jobs through the hell of radiation and chemotherapy treatments and their often devastating side effects, to somehow handle the anxiety that comes not only from every sniffle or backache but also from a dreaded recurrence.

They – and you – have managed to summon up the immense resilience and inner strength – of character and heart – to lobby, to lick envelopes, to travel, to volunteer and to attend meetings in order to help win the battle against breast cancer for other women. They - and you - have managed to find the wherewithall to focus legitimate frustration and anger on political issues in the most powerful ways and to address all the failures of “the system,” including the problems with the NY State Cancer Registry, the “drive-through” mastectomy policy, the hurdles of the medical system and the pathetic sluggishness of the research about the genetic or environmental roots of the disease.

I stand humbled in your presence and thank you for the privilege of addressing you.