Newsletter #105 in PDF Format

X
Source
Issue #105
www.bcaction.org
Spring 2009
Old Evil, New Twist
Environmental Racism
S
By Richard Leiter
heila Holt-Orsted was a very healthy young
woman. An aerobics instructor and fitness
trainer, she was named Miss Tennessee
Bodybuilding Heavyweight and Mixed Pairs
Champion in 1991. When she was diagnosed with
breast cancer in 2003, she asked herself, as so many
women do, “What did I do to get this?” What’s
unusual in Sheila’s case is that she found an answer,
one that involves the EPA, the state of Tennessee,
the town and county of Dickson, and an insidious
system of social injustice that Sheila is working very
hard to correct.
The Holt family owns 150 acres of rural Tennessee
acreage that they’ve lived on and farmed for four
generations. They’re part of a small African American
community—only 4.5 per cent of the otherwise white
population—in Dickson, Tennessee, about 35 miles west
of Nashville. Sheila’s childhood was in many ways idyllic;
she ate fresh corn and apples from the family orchard
and drank cool, sweet water from the family well.
In the 1960s, the town leaders of Dickson converted the
city’s only park in a black neighborhood, located next
to the Holt farm, into a landfill. Into this landfill went
decades of untreated industrial waste, including 3–4
truckloads a week of the carcinogen trichloroethylene
(TCE). The TCE was used by automotive manufacturer
Scovill-Schrader—now named Saltire Industrial—and,
as was the practice at the time, was simply collected in
oil drums and dumped in the landfill along with all the
rest of the town’s toxic waste. Sheila was first exposed to
the TCE-tainted water in 1964; she was three years old.
With the groundswell of environmental interest in
the late 1980s, the Holts’ well water was tested by
the Environmental Protection Agency and found
contaminated by TCEs. It was subsequently retested
twice and labeled “safe”—even though the EPA found
that the TCE levels were dramatically above safe
guidelines. The Holts continued to drink what they had
been assured was the safe water from their well. But
Sheila, returning to her home on family visits, began
Hillary Clinton and Sheila at environmental justice congressional hearing.
to notice some alarming coincidences. Her father fell
victim to, and died from, prostate and bone cancer. Her
aunt who lived next door got cancer. Her uncle died of
Hodgkin’s disease. Three cousins who lived nearby got
cancer. And then, in 2003, Sheila was diagnosed with
HER2+ node positive breast cancer.
During her treatment, Sheila and her young daughter
returned to Dickson for the support of still-healthy
family members. Even though she had in hand the
letters from the EPA and the town of Dickson assuring
her family that their well water was safe to drink, she
couldn’t accept the impossibly high cancer incidence,
localized in her community, as coincidence. In 2003, sick
with the side effects of chemo and radiation, she dragged
herself down to the state environment and conservation
continued on page 6
INSIDE
8
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Not Chronic: Treating Breast Cancer as a Recurrent Disease
2
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FROM THE EXECUTIVE DIRECTOR
Not Chronic
Treating Breast Cancer as a Recurrent Disease
A
By Barbara A. Brenner
s everyone familiar with breast cancer knows, there is no
available cure for metastatic breast cancer (breast cancer
that has spread beyond the breast to life-sustaining
organs). In fact, metastatic breast cancer will kill a
woman who has it unless something else kills her first.
The good news is that some treatments can extend the lives of
some women with metastatic disease by keeping metastatic
breast cancer from advancing, at least for a period of time. These
treatments are not without side effects, however. Some of those
side effects are devastating.
One thing I find interesting at this moment is that advances in
treatment have led the cancer industry to begin to talk of breast
cancer as a “chronic disease.”
The term “chronic” appears to have many meanings. The use of
the term in the context of breast cancer—metastatic or not—
conveys an approach to, and an attitude about, the disease that
points in the wrong direction.
Consider how Wikipedia defines “chronic” in the medical
setting:
A chronic disease is a disease that is long-lasting or recurrent.
The term “chronic” describes the course of the disease, or its rate
of onset and development. A chronic course is distinguished
from a recurrent course; recurrent diseases relapse repeatedly,
with periods of remission in between.
By this definition, metastatic breast cancer is recurrent, not
chronic. While this might seem like an academic dispute,
consider it from the viewpoint of a woman with metastatic
breast cancer. Rita Arditti, a cancer activist and active member
of the Women’s Community Cancer Project in Boston, and a
woman living with metastatic breast cancer, has this to say on
the subject:
Cancer is a progressive disease regardless of “personal
management” of the disease. In the case of diabetes, lifestyle
changes (diet, exercise) are crucial because many times they
can allow the patient to avoid insulin or other treatments.
Apparently, heart disease is in the same boat:
lifestyle changes are crucial and, in many cases, have
been able to control the disease.
What are the lifestyle changes I can make that
would put me in that boat? In fact, the whole issue
of patient compliance is key for people with chronic
illness. For cancer patients, I guess compliance
means showing up for chemo or taking your pills.
The other important point is that the treatments for
cancer are, in some cases, worse than the disease
and that secondary cancers are often a result of the
treatment of the first cancer. Injecting insulin daily is
no fun, but the side effects of some cancer therapies
are frankly horrendous, and the uncertainty of their
effectiveness adds to the burden.
It is one thing is to take insulin or some other
treatment that is known to help. But cancer patients
often receive treatment with only the “hope” that it
will improve their cancer outcome, which may mean
months of bad side effects for nothing. That adds a
big stress factor to the whole picture. Uncertainty is
all over the place with cancer, regardless of attitude,
because we know so little and can do practically
nothing to improve the situation. Not having any
control is in itself terribly debilitating.
continued on page 11
SPRING 2009
3
BOOK REVIEW
Under the Radar:
Cancer and the Cold War
by Ellen Leopold
Rutgers University Press, 2009; $25.95
A
Reviewed by Elayne Clift
mong my earliest memories are whispered grieving over
a young mother in my town dying of breast cancer, green
x-rayed pictures of the bones in my feet when I needed
new shoes, and ducking under my school desk during
nuclear attack practice drills. These events and others, from my
youth to my work in the women’s health movement 30 years
later, filled my mind as I read Ellen Leopold’s well-documented,
informative exposé of the relationship between Cold War
politics and cancer research and treatment.
Leopold humanizes the story by introducing Irma Natanson, a
young mother in Kansas diagnosed with breast cancer in 1955.
Natanson, one of the first women treated with cobalt radiation,
suffered tragic results. We follow her story, including the lawsuit
she brought against her radiologist, setting a precedent for
informed consent. A version of this account appeared in the Fall
2004 issue of the Source, #83.
Cobalt radiation in the 1950s was “inextricably tied to the
history of the United States in the decade following the end
of World War II.” Leopold carefully fleshes out this premise,
revealing how even language fueled a postwar mentality in
which communism, along with cancer, had to be defeated.
Terms like “the cancer of communism” were commonly used
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in Cold War propaganda, each
word having the power to
terrorize, each being framed as
a malignant parasite.
We learn how a civilian
economy more concerned
with profit than people came to rely on nuclear by-products,
even in light of Hiroshima, even as nuclear testing in Nevada
and the Pacific began to yield worrisome outcomes, even as
whistleblowers in the medical and scientific communities were
branded “poor scientists” or “communists.” Leopold clearly
illuminates the relationship between the military, medicine, and
the nuclear industry.
We learn that secret experiments involving the Atomic Energy
Commission, as well as the military and medical communities,
were conducted largely on people of color as well as terminally
ill patients to determine the effects of radiation on humans and
to assess toxicity in cancer treatment. (Women were especially
vulnerable to such treatment.) Often compared to the Tuskegee
studies of black men with syphilis, experiments involving whole
body radiation took place at such venerable institutions as
M.D. Anderson Cancer Center, the naval hospital in Bethesda,
continued on page 7
BOARD MEMBERS
BCA SOURCE
Denise Wells, President
Jane Sprague Zones, Vice President
Adrienne Torf, Treasurer
Bhavna Shamasunder, Secretary
Claudia Cappio, Diane Carr, Lindsey Collins,
Elaine Costello, Tori Freeman, Dorothy Geoghegan,
JoAnn Loulan, Belle Shayer (emerita),
Lee Ann Slinkard, Dawn Surratt
Editor: Richard Leiter
STAFF
Barbara A. Brenner, Executive Director
Joyce Bichler, Deputy Director
Cristina Carrasquillo, Program Coordinator
Zoë Christopher, Office Manager
Sarah Harding, Individual Gifts Officer
Amy Harris, Development Director
Kasha Ho, Program Associate
Richard Leiter, Communications Director
Editorial Board: Barbara Brenner, Sarah Harding,
Joyce Bichler, and Cristina Carrasquillo
Copyediting: Robert Gomez
Layout: Yvonne Day, Y. Day Designs
© BCA 2009, ISSN #1933-2408, published bimonthly
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Not to be used without express written permission.
4
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San Antonio Breast Cancer Symposium
2008 Overview
B
By Jane Zones and Barbara Brenner
CA staffers Barbara Brenner and Allison Young, and
board member Jane Zones, attended the San Antonio
Breast Cancer Symposium (SABCS) in December 2008.
More than 8,000 physicians and researchers attended
the conference this year, along with droves of drug and device
manufacturers and a small number of breast cancer advocates.
The symposium consisted of four days of ten- to 30-minute
presentations, six sessions where numerous “posters” (smallerscale discussions) were presented, special sponsored sessions
in the evenings, and a variety of other events. Most scientific
presentations took place in a vast auditorium that held thousands
of participants. Speakers and their slides were projected on huge
screens that hung throughout the hall. No more than five minutes
for questions were provided for any presentation.
This article highlights some of the themes of the conference.
You can visit our web site to retrieve more detailed descriptions
of the various events we attended. And abstracts and slides
from most of the presentations are online at www.sabcs.org,
where you can log on as a guest for complete access.
Metastasis—Finally on the Radar Screen
As most people dealing with breast cancer know, once the
disease has metastasized (spread from the breast to lifesustaining organs or to bone), it cannot be cured. We desperately
need to figure out how to prevent metastasis from occurring and
how to treat it more effectively when it does occur.
Metastasis got a lot more attention at SABCS this year,
and that’s a good thing. There were four major overview
presentations on metastasis: on circulating cancer cells, by
Klaus Pantel; tumor “self-seeding,” by Larry Norton; metastasis
suppressor genes, by Patricia Steeg; and the unique aspects of
breast cancer metastasis as distinguished from lung and colon
cancer metastasis, by Joan Massagué. Massagué is coauthor of
a special article on this topic in the December 25, 2008, issue
of the New England Journal of Medicine.
This is important work, especially in the ongoing effort to
individualize care, treat only those who would benefit from
particular treatments, and more effectively treat metastatic
disease. You can find more details about these presentations on
BCA’s web site.
Overcoming Drug Resistance:
How to Make Drugs Keep Working
Some women treated with tamoxifen develop recurrences,
or metastases, indicating that the drug has stopped working.
Indeed, development of resistance in some patients is found
with all cancer drugs. Several of the sessions at SABCS dealt
with overcoming Herceptin resistance.
“Signal transduction inhibitors” (STIs) are drugs like Herceptin
(trastuzumab) that inhibit signals between cells that are
involved in the cancer promotion process. Stephen Johnson
presented a theory that resistance to tamoxifen can be
overcome or prevented by giving an additional STI drug.
Johnson made it clear that his theory is just that, and that it
is not yet ready for clinical application. Among other things,
performing biopsies will be necessary to understand what cell
pathways are active in a given patient so that the correct STI
can be chosen to inhibit that pathway. While Johnson was clear
that understanding of this process is still being developed, we
feared that some of the clinicians in attendance would come
away thinking that combining an STI with a hormonal therapy
will overcome resistance.
It’s still uncertain who is likely to develop resistance. Will the
doctors who read about this presentation decide to give both
drugs to everyone so that they’ll reduce the risk in the ones
who will benefit? Will the result be yet more treatment—and
more expense and more unnecessary side effects as we grasp
for anything that might keep patients alive?
Sequencing Hormonal Treatments
A number of presentations addressed combining hormonal
treatments with other drugs and the sequencing of drug
treatments to maximize benefit.
Not long after aromatase inhibitors (AIs) came on the scene
for adjuvant treatment of breast cancer to reduce risk of
recurrence, the medical community began to ask whether
patients already on tamoxifen would do better by being
switched to an AI. And trials have been reported at previous
SABCS meetings looking at the benefits of switching.
We heard five different presentations that considered which
hormonal drugs to prescribe, in what order, and whether the
order mattered: Abstracts 11 (lasofoxifene [SERM] to reduce
risk of breast cancer, 12 (meta-analysis of switching studies
of tamoxifen and AIs), 13 (letrozole and tamoxifen, alone
and sequenced), 14 (tamoxifen alone vs. tamoxifen switched
to anastrozole), and 15 (tamoxifen vs. tamoxifen switched to
exemestane). A more complete description of these abstracts
can also be found on BCA’s web site at www.bcaction.org.
So, what’s the take-home for all of these studies? It seems to be
that the drumbeat for AIs continues to build, though which
one to give, whether to give tamoxifen first, and how long to
continue treatment remain unanswered questions. We have
more information, but not more knowledge.
continued on page 5
SPRING 2009
->˜Ê˜Ìœ˜ˆœo
continued from page 4
There are several other things to note about these studies:
x Many of them found statistically significant differences. Keep
in mind that “statistically significant” does not mean “large” or
“meaningful.” What it means is that the phenomenon is very
likely real, not a chance outcome.
x Several of these studies involved unblinding of the trials and
crossover, meaning that women in the “control” arm of the
study could then get the “treatment” being offered in the study.
Crossover seriously complicates the analysis of results and very
likely biases the results in favor of AIs. While the reason for
allowing crossover is compelling—if something seems to work,
shouldn’t everyone have the chance to get it?—the practice
undermines the results of the trials. Wouldn’t women be willing
to forego unblinding and crossover if they understood the need
to have more reliable trial results? Shouldn’t we ask them?
x Most of these trials were funded by the companies whose drugs
were being tested.
Imaging
There were a number of talks on breast cancer imaging, both for
detection (screening) and for making a more precise diagnosis after
a tumor is detected.
Ultrasound in Breast Cancer Screening—Wendie Berg, a
radiologist, started from the premise that mammography is the
gold standard but noted that some subgroups of women may not
benefit from mammography. She thinks that women at high risk
of developing breast cancer should get MRIs for screening under
the American Cancer Society’s guidelines. And she also maintains
that women getting MRIs and mammograms don’t need to do
ultrasound, too.
But for women at intermediate risk, Berg finds lots of things to
favor ultrasound: it’s relatively inexpensive, widely available, not
radiation based, and well tolerated. The ongoing trial of ultrasound
for screening, ACCRIN 666, which published its first results in
JAMA in May 2008, shows that ultrasound is good at finding
small lesions and node-negative disease, but there are a lot of false
positives leading to unnecessary biopsies. Of course, this happens
with every detection method currently in use.
Issues of technologist training and insurance reimbursement
also need to be resolved. And, as is always the case whenever the
discussion is about screening, Berg pointed out that ultrasound
supplements but doesn’t replace mammography. It seems we’ll
always have mammograms. So much for progress.
5
MRI as a Diagnostic Tool—Monica Morrow is a surgical
oncologist who heads Memorial Sloan-Kettering Cancer Center’s
Breast Service. Her major research interest is the application of
knowledge from clinical trials to daily surgical practice, and her
talk was a beautiful example of this.
MRI is used in detecting breast cancer in asymptomatic women
(screening) and in providing information to improve patient
outcome in women with breast cancer (diagnosis). Morrow
addressed MRI’s use as a diagnostic tool only. The potential benefits
of MRI in diagnosis are to refine decisions about breast conservation
therapy, determine the extent of the tumor, identify potential
contralateral cancer, and decrease the risk of local recurrence.
In a range of studies, the total number of mastectomies is
persistently double in women who have MRI. Furthermore, having
MRI delays surgery for an average of three weeks. Diagnosisrelated MRI studies have been retrospective and not randomized.
Women who undergo MRI are on average six years younger and are
selected for imaging because they are more likely to benefit, which
would result in more favorable research outcomes for MRI. Even so,
no advantage has been shown for such imaging.
Morrow summed up by saying that MRI finds more cancer, but
what is found is not clinically relevant. Neither short-term surgical
outcomes nor long-term local control or contralateral cancer rates
are improved with MRI. Because of this, she recommends MRI
only for BRCA1 and 2 carriers, those who present with positive
lymph nodes, those who are being assessed for neoadjuvant
therapy, or those whose diagnosis is not resolved by physical exam,
mammogram, and ultrasound.
“The routine use of MRI in cancer patients requires some evidence
of clinical benefit,” Morrow said, as she ended her lecture. “To date,
this does not exist.”
Morrow’s presentation was followed by a report on the first and
only prospective study of MRI, the COMICE trial, which was
sponsored by the research arm of the British National Health
Service. (England and Canada sponsor significant research on
actual effectiveness as a means of cost containment). The results of
COMICE substantiated Morrow’s perspective.
In Summary
For people who are not medical researchers, attending SABCS was
a major challenge, but it was important for those of us who follow
the progression from ideas to treatment. Our web site includes daily
accounts of events we attended, and slides and abstracts are available
on the SABCS web site. We encourage you to make use of this
information. X
Jane Zones is a medical sociologist and a BCA board member.
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continued from page 1
offices in Nashville and requested information on water testing
in her city. She was casually handed a cardboard box filled with
paper, and what she found astonished her.
At the same time that the county of Dickson was mailing letters
to black families assuring them that their well water was safe, the
same officials were sending letters to white residents warning
them to stop drinking their well water and to switch to the
municipal water supply.
Sheila knew she had to do something, but she didn’t know what.
She’d been trained as a bodybuilder, not an environmental activist.
Trying to be supportive, her husband gave her a video of the film
Erin Brockovich, and emulating the Julia Roberts-portrayed main
character, Sheila talked to any expert who would listen: college
professors, chemists, engineers. They all pointed her to one man:
Robert Bullard, director of the Environmental Justice Resource
Center at Clark Atlanta University and one of the nation’s leading
experts on environmental racism.
Sheila tried reaching the busy environmental activist for six months
but got no response. Finally, on a fluke, Bullard picked up the
phone one evening and heard her story. At first he was disbelieving.
No official, he said, would be foolish enough to leave a paper trail
of racism. But he was wrong; Sheila had photocopies of the actual
letters that had been sent to both the white and the black families.
Bullard, finally convinced, joined the fight. Sheila had found an
ally who would uncover a systematic abuse of environmental
guidelines, civil rights laws, and simple human decency. Not only
had the county dramatically understated the risk to black families,
but it had paid to switch over the white families’ water supply to the
municipal water system and delivered bottled water to them in the
interim. In 1991, a state water official discovered the potential for
toxins in the Holts’ water supply and alerted the EPA to the danger.
The federal agency pooh-poohed the state’s concern and Tennessee
»
We were the wrong complexion
for protection, but all that’s
going to change.
went along with the EPA’s conclusions, even as more and more tests
confirmed that the level of TCE in the Holts’ water supply was 24
times the EPA’s recommended level.
Beginning in 2003, attorneys filed lawsuits on behalf of 12 Holt
family members against the city, county, and state for negligence in
not warning them of the man-made dangers in their water. And in
2007 the NAACP Legal Defense Fund filed an amended complaint
claiming discrimination as well. Last year Sheila added Hillary
Clinton to her long list of supporters when the then-senator invited
her to Washington to testify before the first ever environmental
justice congressional hearing.
The Holts have clearly suffered at the hands of public officials. In
addition to the sickness and death from various diseases, their
longtime family home and farm have become worthless. To make
matters worse, Sheila recently experienced a recurrence of breast
cancer and underwent a mastectomy.
But all this seems to make Sheila Holt-Orsted’s passion burn even
hotter. She has converted her minivan into a mobile activism center
and—when her treatment schedule allows it—is in constant battle
with the status quo: “We were the wrong complexion for protection,”
she states, echoing Robert Bullard’s rallying cry. “But all that’s going
to change.”
Breast Cancer Action applauds Ms. Holt-Orsted in her commitment to reversing social inequities on behalf of not only her family
but all of us. X
80 CENTS OF EVERY DOLLAR YOU GIVE TO BCA HELPS END THE EPIDEMIC
A leader in the health care industry told us recently that she was
shocked when she found out what our budget was. “I thought
you were three times that size!” she said. We get that reaction
quite often.
We host two web sites, broadcast monthly e-alerts, maintain a
toll-free information and referral hotline, issue press releases,
monitor and evaluate breast cancer research, advocate for better
laws, conduct outreach programs in the community, attend
and staff conferences, and publish a highly regarded quarterly
newsletter, the Source.
Every year we run our national Think Before You Pink campaign,
which always brings results. This year it was responsible for
General Mills’ removing rBGH dairy from its products. The
hormone has been linked to breast cancer.
»
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And everything we do works towards:
[
x Ensuring more effective and less toxic treatments by
improving FDA drug-approval standards.
x Protecting everyone's health by decreasing involuntary
exposures to environmental toxins that put people at risk for
breast cancer.
x Addressing inequities in breast cancer incidence and
mortality.
Times are tough and the economy is cyclical, but cancer doesn’t
care. We could not do this work without your support. Please
make a contribution today by visiting our web site at www.
bcaction.org or calling 877/2STOPBC (877/278-6722).
SPRING 2009
7
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x
Joan Kelley and Margo Coster for
volunteering with BCA at SABCS
x
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of office furniture
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Office volunteers Caren Cummins, Carol
Fong, Lois Pickett, Vidita Chopra
x
Office interns Sasha Muraoka and Pia-Lin
Ramon
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M.C. Duboscq and Glikman Associates
and Robert Stebbins, Pension Specialists,
for assistance with our 403(b) plan
x
x
Steve Endo for assistance with BCA’s
financial management
Rick Riemer and Zack Pingel for lifting
heavy office equipment
x The Source transition consultant,
x
Jenn and everybody at Emma (BCA’s
e-alert provider) for their in-kind donation
of tech services
x
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Lynn Ohman for making good connections
for BCA
x Tori Freeman and Jane Zones for tabling
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and problem-solving assistance
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x
Joan and Lee Kelley and Carole Baas for
representing BCA at the Young Survivors
Conference in Dallas, Texas
Gail Kaufman, Laura Dawson, and Susie
Lampert for working tirelessly to raise
funds for BCA
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California Wellness Foundation for
providing BCA staff a scholarship to
NGen: Moving Nonprofit Leaders from
Next to Now
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Choral Society for their complimentary
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Magic Theatre staff: Loretta Greco, Jayne
Benjulian, Erin Gilley, and Becky Chambers
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Scott Kogan for his instruction and insight
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Roger Riedlbauer for lending his musical
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LaGarde, and Adrienne Torf for hosting a
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Dan Ripley for his in-kind donation of
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Ernie Rideout
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Rick Riemer for his design work
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Karen Ingebrigtson, certified ergonomic
evaluation specialist, for donating her time
and expertise
Claudia Cappio, Diane Carr, JoAnn Loulan,
Dawn Surratt, Adrienne Torf, Denise Wells,
and Jane Zones for their generous support
in celebrating our TB4UP Victory
œœŽÊ,iۈiÜo
continued from page 3
Maryland, and Sloan Kettering in New York, supported by the
Defense Department. “Subjects were neither informed of the serious
risks involved nor told of the likely side effects of radiation exposure.”
Risks and ethical questions involved were minimized or denied
by those invested in radiation therapy. Even in 1994, the head of
radiology at M.D. Anderson told one reporter, “There’s really nothing
I can find that would question the ethics of the study at all. I think
in the context of the 1950s, the experiments were fully justified as a
therapeutic endeavor for people with hopeless cancer.”
Wittingly or unwittingly, the media played a role in suppressing
information or in misleading readers by ignoring compelling facts or
because of a prevailing ignorance about science. To some degree this
has continued. But as stories of radioactive fallout, nuclear energy
disasters, and increasing incidents of cancer began to emerge, the
public demanded more reliable information. Thanks in large part to
the women’s health and consumer movements of the 1970s, more data
became available, creating an atmosphere in which educated, assertive
Flaunt Boutique and Blues
Jean Bar for donating a portion
of their proceeds to BCA
BCA events
x Tough Titty director Robert O’Hara, all of
the actors and actresses, and volunteers
Joni Ben-Yisrael and Lois Pickett
For a full list of BCA’s business supporters
or to learn more about how you can
support BCA, visit www.bcaction.org/
BusinessSupport.
patients demanded more of their physicians. Activists like chemist
Linus Pauling revealed the truth about fallout and the frenzied
fraternity of pro-nuclear bureaucrats and the doctors with whom they
colluded. “Mythology in the service of ideology” began to wane.
Leopold’s final chapters deal with prevention, mammography, and
continuing questions about cancer treatment. “Today’s concerns
may not involve safety, but the need to maintain the position…
of mammography within the cancer hierarchy,” she writes. “The
technique remains controversial…but the promotion of screening
brooks no doubts. It continues to rely on the same mantra of early
detection without adding caveats about the technique’s fallibility.”
In 1950, 200,000 Americans died of cancer. In 2000, that number
exceeded 500,000 despite all the breakthroughs in diagnosis,
“prevention,” and treatment. That statistic alone should clearly be
reason to read this important book. X
Elayne Clift, a writer and adjunct professor at Granite State College
(New Hampshire) and Community College of Vermont, served as
program director for the National Women’s Health Network from 1979
to 1981. She lives in Saxtons River, Vermont. Her web site is
www.elayneclift.com.
8
Ê-"1,
DONATIONS IN HONOR
BCA gratefully acknowledges donations made in honor of the following individuals between September 25, 2008, and February 20, 2009.
Alison, Hope, Jane, Lynanne
from Jill C. Israel
Alison Braverman
from Vicki Green and Bob Curry
Shelley Alpern
from Alexis Lieberman
and Ilene Burak
Barbara Brenner
from Anonymous (2)
from Martha Fay Africa
Margi Clarke, Liza Tredway,
and Anne Kasper
from Eve Borenstein
and Candace Falk
Lanie Cohen
from Deborah Cohen
All the Women in My Life and
the Lives of My Friends and
Family
from Paula Siddens
from Carl and Gay Grunfeld
All the Women Who Are Brave
to Fight Breast Cancer
from Brenda Munks
from Elizabeth Plapinger
and John Berger
Ruth Colker and Delly Musen
from Fran Danoff
from Carole Poyourow
Nicole Arakawa
from Michele and Jim Andrew
from Noreen Vera Purcell
Jeannine Collins
from Barbara Thomason
and Anna Crawford
Patricia C. Arango
from Patricia Cosmos Arango
and Robert Arango
from J. David Sams
Marge Athey, Sharon Cloghessy,
and All the Athey Grandchildren
from Coral J. Fry
from Sandra Sohcot
Pauline Attard
from Theresa Attard
Babasusie (Barbara and Susie)
from Ronnie Caplane
BCA Staff
from Mira Fabian
The Wonderful BCA Staff
Members!
from Tori Freeman
Joyce Beachy
from Janice Richter
Kathy Beebe
from Robin Germain
Deborah Behrakis
from Carole L. Mendelsohn
Alice Benet, My Sister-in-Law
from Lynn Kersey
The Board, Staff, and Volunteers
from Belle Shayer
Janine Braak Peregrine
and Cindy Ward
from Douglas Braak
Judy Brady
from Pat Hoover
Victoria Brady
and Susan Thompson
from Margo McFedries
from M. Anne Jennings
from Jane Kahn and Michael Bien
from Deborah J. Marx
from Ellen W. Reath
from Norman and
Adrienne Schlossberg
from Linda Wardlaw
Barbara Brenner
and Susie Lampert
from Irma D. Herrera
and Mark D. Levine
from Sara Markel
and Lloyd Altman
from Charlotte E. Burchard
Bahman and Sheikh-Ol-Eslami
Suzanne Bria
from Tracey Lynn Brown
and Allison C. Smith
Doris Brown
from Nicole Brown
Gail Cohen and Ginny Dorris
from Ayelet Waldman
and Michael Chabon
Nancy Colton
from Evelyn Gray
Natalie Compagni Portis
from Beverly Portis
Bonnie Crandle
from Maer Ben-Yisrael
Glenda Cudaback
from Dale Kern
Mary C. Cullen
from Nikki Nahmens Gage
and John Gage
Frances Suey Dener’s Birthday
from David and Adele Dener
Jody Docken
from Gregory Barsness
and Stephanie Willson Barsness
Patricia Stocking Brown
from Bonnie Spanier
Nancy Dyson
from Patricia and
Laurence Sheldon
Suzie Buse
from Nancy Schuepbach
Barbara Ehrenreich
from AFGE Local 12, AFL-CIO
Alice Buttler
from Joan H. Patten
May Elinson
from Elaine Elinson
and Rene CiriaCruz
May Elinson
and Karen Jo Koonan
from Eileen Goldman
and Robert Gabriner
Daun Calvert
from Anonymous
Diane Carr
from Mary Anne McGuire-Hickey
Liz and Ells Chase
from Lisa Westerback
Margo Choukrane
from Marcia Wexler Kerwit
Cristina Emanuel
and Merril Kolovson
from Nora Roman
Bobbie Erlichman
from Marianne Erlichman
Ellen Fey and Kate Dyer
from Audrey Paxson
Debi Fidler
from Lynda and Michael Gilgun
Rosette Fischer
from Cathy R. Fischer
Cathy Fischer
from Melissa Howden
Sonia Flores
from Varya Simpson
Tori Freeman
from Karen Andersen
from Wendy Brummer-Kocks
from Melissa White
Friends Who Are Survivors
from Nan Strauss
Marisa Fuentes
from Barbara Wunsch
and the Faison Kids
Kristal Germroth
from Ann Rasmussen
Lori Leigh Gieleghem
from Karen Merritt
The Girls
from Sharon Fry
Julie Gordon
from Elizabeth Merck
Mimi Gray
from Victoria Gray
Kelly Green
from Anonymous
Vicki Green, My Mother
from Alison and Phil Braverman
Laurie Greenbaum Beitch
from Elise LaPaix
JaJa Greenberg
from Eve Biddle
Sandra Hagen
and Nancy Zweifel
from Sandra Hagen
and Nancy Goldstucker
Mary Harms
from Kathleen and Ralph Harms
Amy Harris
from Kima Hayuk
Linda Hiller
from Sandi and Davis Riggs
SPRING 2009
9
Barbara Hoffer
from Jonee Levy
Linda McElvery and Monty Cook
from Carolyn Parks
Evelyn Oltman
from Roxanne Fiscella
Christine Storm
from Dorothy E. Meier
Marika Holmgren
from Karen Topakian
Mary Melinda McLean
from Sandra H. Pinyard
The Oncology Support Program
from Barbara Sarah
Cathy Howard
from Caitlin Stanton
Me
from Debra Fidler
Nancy Oster
from David L. Oster
Karen Strauss
and Ruth Borenstein
from Sheldon and Muriel Strauss
Carla B. Howery
from Susan J. Ferguson
Me, a Breast Cancer Survivor
from Dorothy Washington
Rosemary Packard
from Judith Coyote
Marilyn Jacobowitz
from Alice Hoch
and Melvin A. Hoch, M.D.
Me, 17-Year Survivor
from Linda Handschu
Fay Parrish
from Anonymous
Uen Meei-Fen
from Anonymous
Lauren Patterson
and Natalie Long
from Deanna Dawson
Lisa James
from Joel Anderson
from Amy Harris
Terry Klock and Lois Rose
from Terry Klock
Kathy Klos
from Anonymous
Karen Jo Koonan
from Marci B. Seville
and Lisa Riordan-Seville
Ms. Laura Kwok
from Myra and Peter Shostak
Ortha Lebrosky
from Nancy L. Russell
Clayton Lee
from James Cheung
Mary Lievore
from Jennifer R. and
Roderick K. Macleod
Carly H. Little
from Mari Osuna
and Adam DeBoor
JoAnn Loulan
from Diana and Dan Bergeson
Jennie Moore Lowe
from Teri Moore
Jenny Lowood
from Edith Lowood
Laura Lundahl
from Joyce E. Beachy
Jennifer Machi
from Amalia Modena
Judy Macks
from Joan Lefkowitz
and Stacey Shuster
Shirley McCarthy
from Margot and Valentine Chmel
Meredith McCormack
from Anonymous
Stephanie Mermin
from Claudia Polsky
and Ted Mermin
Cathy Merschel
and Joan MacQuarrie
from Lenore Dale Ralston
Hester Meyers
from Anonymous
My Daughter, Carolyn
from June R. Finis
Leslie Pearlman
from Lise A. Pearlman
Carol Pepper
from Anonymous
Rosemary Peracchio
from Lorraine Wilbur
To Protect Women
from Anonymous
My Sister, Muggins
from Holly McGuiness
Padma S. Rao
from Bhavna Shamasunder
and Patrick Koppula
My Mom
from Anonymous
JoAnne Rice
from JoAnne Rice
My Mother, Patricia
from Chanel DeLaney
Rosemary Richard
from Susan Moe
My Ninth Year of Surviving BC
from Martha M. Flint
Laurel Rosen
from Susan E. Rosen
and Lance S. Raynor
Myself
from Anonymous
Myself
from Loretta Scott
Rachel Morello-Frosch
from Martha Morello-Frosch
Lori Morton
from Robert D. Morton
Judy Muhlenberg
from Allyson Johnson
Brenda Salgado
from Jane Sprague Zones
and Stacey Zones
Annette Schutz
from Knack Design
and Production
from Teresa Marrow
Connie Sherak
from Ruth Koizim
Kyra Subbotin
from Laura Enriquez
Cheryl Swift
from Susan Gotsch
Alice Tabencki
from JT Tabencki
Think Before You Pink
from Melanie Goodman Dante
Those Living With Metastatic
Breast Cancer
from Ellen Moskowitz
Adrienne Torf
from Patricia Dunn
and Eileen Blumenthal
Debra Travis
from Kellea Miller
Lisa Twilling
from Mariana Breuer
Deborah Waksman
from Steve Waksman
Julia Kay Wathen Fox, Miranda
C. Wathen, Alayne Leigh Shields,
and Elizabeth Anne Shields
from G. Lynn Huber
Sharon Watson
from Mary Jean Hayden
Denise Wells
from Connie Herrick
Denise Wells
and Barbara Brenner
from Joan MacQuarrie
and Ellen Slack
Jennifer Willman
from Mary C. Hunt
Laurie Wood
from Deborah and PJ Behrakis
Charlotte Neil
from Norma and Jeffrey Young
Marcia Siegel
from Kyra Subbotin
and Henry Siegel
Annette Nelson-Wright
from Lindsey Collins
Lois Silverstein
from Eve and Daniel Langton
Meredith Norton
from Rochelle and
William A. Lester
Joy Simha
from Bella D. August
Bobbie Wunsch, for Her
Amazing Work on Behalf of
Women’s Health
from Phyllis Schoenwald
Tillie Sohigian
from Judith Norsigian
Beverly Ziegler
from Julia Tower
Of Your Great Work
from Marjorie Parsons Wazeka
Elle Wright
from Jennifer Drayton
and Michael W. Wright
10
Ê-"1,
DONATIONS IN MEMORY
BCA gratefully acknowledges donations made in memory of the following individuals between September 25, 2008, and February 20, 2009.
Susannah Abrams
from Lori Berlin
In Memory and Honor of All
Those Who Support and Have
Been Impacted by Breast Cancer
from Linda L. Gustafson
Katie Allen
from Margaret Rossoff
Joyce Ambrosini
from Margaret Geneva Langston
Alice Arndt
from Anonymous
Pat Arnesi
from Robin Mackey
Anthony J. Attard
from Pauline Attard
Mrs. W.C. Atwater Jr.
from Doris Bouwensch
Phyllis Blaney
from Ferol Blaney
Sandra Gardiner Blevins
from Louise Galindo
and Jeffrey Gardiner
Patricia Brennan
from Catherine Anne Brennan
and Albert Gasser
Marilyn Brown
from Phil Brown
Dorothy Bruggeman, Beloved
Mother of Kenneth Bruggeman
from Linda Louise McMahan
Selma Butter
and Hannah Wilkie
from Marsie Scharlatt
Carol Cabell
from Noemi Levine
Toni Carson
from Anonymous
Susan Claymon
from Elizabeth Merck
Suzy Cox Carter
from Eloise Barnett
from Nancy J. Bauerle
from Janet and Jan Berlin
from Beverly Waters
Ann Dashe
from Julia Dashe
Jean S. Davis and Karen J. Ennis
from Nancy Davis
and Donna Hitchens
Linda M. Day
from Ellen and David Harris
Virginia DeFreitas
from Diane and Richard Stein
Juanita Deness
from Diana Hickson
Susan Detjens
from Karen Caruso
from Shelly Hook
from Anne Lees
Lynette Doyle Betty
and Sue Ferguson
from Ramona L. Doyle
Madelyn Dunham, Barack
Obama’s Grandmother
from Jill Jakes
Linda Dyer
from Anonymous
from Mily Trabing
and Susan Thomas
Jennifer L. Hamm
from Angela Bottum
and Marjorie Hamm
from EMET Assoc. Women’s
Giving Circle
from Margaret Newell
Connie Harms
and Judee Harms King
from Dona and Joseph Santo
Edna Toto Hartley
from Tess Hoover
and Claudia Hartley
Janis Harvey
from Anna Saenz
Judee King Harms
and Connie Harms
from Daisy Fernando
Chris Kitchel Hirabayashi
from Jill Gallagher
and Alicia Hasper
from Sadako and
Hiroshi Kashiwagi
from Meredith Owens
Nancy Kitt Mills
from Heather and Kitt Sawitsky
Jackie Kohl
from Dora C. Weaver
Nancy Hill
from Anonymous
Esta Kornfield
and Christina Middlebrook
from Millie Fortier
Carlie Hofemann
from Eleanor Barrett
Maree Lambe
from Anonymous
Jan Holden
from Barbara S. Bryant
Jodi Lent Beldotti
from Martha Crusius
and Tom Lent
My Cousin, Mary Mooney
Holland
from Margaret Lowery Walsh
D. Lidowsky
from Staci Selinger
Debi Effron
from Zoë Christopher
Karen Hopfinger
from Anthony Hopfinger
Loved Ones
from Anonymous
Oscar A. Eisbrenner
from Cathy and John Bair
Nancy Hopson
from Margaret Taylor
Mary Jo Luck
from Jim Luck
Miriam Engelberg
from Ellen E. Hamingson
Molly Ivins
from Anonymous
from Evelyn Jo Wilson
and Carol Bennett
Lorette Lyall
from Sandra Blair
Betsy Ervin
from Don Bushman
My Mother, Esther Levene
Friedland, Who Died of Breast
Cancer
from Joan M. Friedland
Marilyn Galatis, Nancy Leventhal,
and Nan Lieberman
from Patricia Campbell
Lee Johnson
from Emily Charles
and Alex Hatch
Tammy Johnson
from Anonymous
Martina Johnson-Kent
from Sadja Greenwood
Nina Gleekman
from Adena Cohen-Bearak
and Arnold Bearak
June Jordan
from Frances Gleitman
and Marilyn Trager
Alix Graves
from Shane Snowdon
Nanette Kelley
from Anonymous
Estelle Gribetz
from Myra Hogan
Gloria Kelman
from Maye Thompson
Ruti Hafsadi
and Catherine Laroche
from Miriam Moussaioff
and Andrew Greenberg
Stephanie Kennedy
from Anonymous
Lynnly, Patricia, Marsha
from Ellen Kugler
Kay Lyou
from Russell G. Worden
and Janette R. Lawrence
Mary Jennine Majeski
from John Majeski
Del Martin
from Phyllis Lyon
Esther Mayer
from Alice and
Melvin A. Hoch, M.D.
Debra Mayo
from Sharon and Eugene Sullivan
Ann McAllister
from Donna Brogan
Suzanne McGuinn
from Brian McGuinn
SPRING 2009
Gail Minsky
from Sara Jane Moss
11
from Linda D. Taggart, Her Sister
from Julia Tower
Sylvia Mogos
from Lucretia Nistor
Melissa Quan
from Margo L. Arcanin
Deb Mosley
from Laurie J. Earp
Josephine Renzi and Marie
Thompson
from Susan Thompson French
Our Daughter, Rebecca Nataloni
from Frances and John Nataloni
Narcisa Nazario
from Danisha Nazario
Tanya Neiman
from Brett Mangels
from Marci B. Seville
and Lisa Riordan-Seville
Marti Nelson, M.D.
from Patricia Jordan-Grinslade
from Sylvia Mitchell
Penny Nichols
from Richard Leiter
and Pam Nichols
Mary Jane Richards, My Mother
from Victoria Sue Lantz
Melody Rines
from Melita Rines
Ilene Rockman
from Fred Gertler
Susan Stone
from Diana EtsHokin
from Linda G. Marks
Marla Turskey
from Charlotte and
Arthur Zitrin Foundation
Anne Rosenbaum
from Neshama Franklin
Stella Szterenfeld
from Helen Szterenfeld
Susan Tygel
from Anonymous
Brenda Roth
from Barbara and James Kautz
Christine Tamblyn
from Rebecca Tamblyn Pence
and Emily Pence
from Ruth and James Tamblyn
Judith Wachs
from Rita Arditti
Anne Sachs
from Marilyn and Morris Sachs
Barbara Novack
from Linda Novack
Carol L. Scott, My Sister
and Best Friend
from Sherri D. Webb
Terrence L. O'Brien
from JoAnn O'Brien
Pat Singer
from Cathy R. Kornblith
Norma Peterson
from Cynthia Dorfman
Ruth C. Soltanoff-Jacobs
from Rochelle Galat
and Bruce Jacobs
Mary Ponton Hoaglund
from Rhoda Rudd Prall
Elenore Pred
from Dena F. and
Ralph Lowenbach
from Linda Rowe
and Dennis Kellett
from Roslyn Schwartz
Thank you for giving.
Your contributions help us
carry the voices of people
affected by breast cancer.
Pamela J. Stage
from Clifford P. Stage
Irving Stein
from Arthur Holden
Ruth Stephenson
from Heather Stephenson
œÌÊ
…Àœ˜ˆVo
continued from page 2
If a “chronic” disease is one that the public believes can be
successfully managed by the person who is ill—without serious side
effects from the treatments—clearly metastatic breast cancer is not a
chronic disease. If metastatic breast cancer is ever to actually become
a chronic disease, we will need far more progress in treatment and
improved quality of life for those who take these treatments.
Breast cancer is also sometimes referred to as a chronic disease,
because the risk of recurrence never completely disappears. Women
with early stage disease are followed in medical care for long periods
of time. (Sometimes for as long as they live, even though they may
well live a long life and die without a breast cancer recurrence.) In
this context, the push to view breast cancer as a chronic disease
Evelyn Telsey
from Nadia Telsey
Katheryn Tichenor
from Henry Greeley
from Patricia Taylor Greer
from La Salle High School
from North Falmouth School
Sunshine Fund
from Patricia Kearney-McCarty
and Ernest McCarty
Helen Tonegato
from Theresa Attard
Peggy Trask
from Fred W. Trask
Jane Walker Milburn
from Martha Ward Evans
Elizabeth Leary Walsh
from Ned Walsh
Don Wanzor
from Sarah Marxer
and Lisa Wanzor
Mary Winter
from Catharine E. Kibira
Constance Wofsy, M.D.,
and Maire McAuliffe, M.D.
from James Budke
Micky Wolfe
from Virginia Wolfe
Noah Wolfson
and Barbara Seaman
from Alice J. Wolfson
seems to be an effort by the cancer establishment to convince the
public that we can manage it successfully, and therefore we need
not be concerned by the fact that there are still millions of women
diagnosed with breast cancer every year.
Urging the public to accept the notion of early breast cancer as
a chronic disease undermines the demand for true breast cancer
prevention. After all, if you can manage an illness once it occurs, why
should you be concerned about keeping people from getting it?
How we think and talk about breast cancer and other cancers clearly
has implications for how we address the disease. We all need to move
beyond accepting the notion of breast cancer as a chronic disease if
we are to have any hope of truly ending the epidemic. X
More on BCA’s view of cancer issues can be found at
www.bcaction.org/index.php?page=cancer-policy-perspective.
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INSIDE
OLD EVIL,
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6," /Ê
,
- . . . . . . PAGE 1
BREAST CANCER ACTION
WHAT DOES BCA DO?
As the watchdog of the breast cancer movement, we encourage
our members to ask tough questions and to understand the
connection between personal changes and the social changes
necessary to end the breast cancer epidemic.
We advocate for policy changes in three priority areas:
X Patients first—FDA advocacy: Demanding more effective, less toxic
treatments by shifting the balance of power at the FDA away from
the pharmaceutical industry and toward the public interest.
X Health and the environment: Working to decrease involuntary
environmental exposures that put people at risk for breast cancer.
X Inequities in breast cancer: Creating awareness that it is not
just genes, but social injustices—political, economic, and racial
inequities—that lead to differences in breast cancer incidence
and outcomes.
We provide information to anyone who needs it via newsletters, web
sites, e-alerts, and a toll-free number.
We organize people to do something besides worry. BCA sifts
through the stacks of misinformation that now circulate about
breast cancer. What you won’t learn in the newspaper or on
television—or sometimes even from your doctor—is in our
highly aclaimed publication, the BCA Source.
MISSION STATEMENT
Breast Cancer Action carries the voices of people
affected by breast cancer to inspire and compel the changes
necessary to end the breast cancer epidemic.
CORE PRINCIPLES AND VALUES
B We are a membership-based organization that values the
involvement of grassroots activists throughout the country
and around the world to further our mission.
C We honor each person’s commitment and energy to our mission.
D We are not afraid to examine all sides of all issues.
e We cannot be bought.
f We tell the truth about what we discover.
g We serve individuals while reaching the broader population.
h We address the significance of environmental links to
human health.
i We encourage people to participate fully in decisions relating
to breast cancer.
j We believe access to information is vital.
1) We work for structural changes toward social justice to
accomplish our mission.
BREAST CANCER ACTION —
CHALLENGING ASSUMPTIONS. INSPIRING CHANGE.