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 cutting-edge 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.
