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[HRC Daily File] Monday October 18 [1993]
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[HRC Daily File] Monday October 18 [1993]
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MONDAY, Oct. 18th
PHOTOCOPY
PRESERVATION
MONDAY 10/18
The
N
National
BO
Breast Cancer
Coalition
a grassroots advocacy effort
PHOTOCOPY
PRESERVATION
P.O. Box 66373
Washington, D.C. 20035
(202) 296-7477
N
The National
FUTURE
NBCC Search for Major Gifts Director
PLANS
Due to a generous grant from a supporter of the Coalition, we are in a
position to hire a seasoned Major Gifts Fund Raiser. We are looking for an
individual with a proven track record and strong fundraising experience in
BC
Breast
May Conference
Plans for our May
identifying, cultivating and soliciting significant gifts from individuals and
Cancer
conference are shaping
corporations ($5,000 $100,000). We need an excellent planner and imple-
mentor, with good oral and written communication skills. Base location and
C
up. We now anticipate
Coalition
that the advocacy train-
hours are negotiable. If you know of someone who fits this description and is
ing seminar will take
interested in the position, please have her send a cover letter, resume and writing
a grassroots advocacy effort
place on Monday, May
sample to NBCC Search, c/o 612 D St. N.E., Washington, D.C. 20002.
3 at the George
Washington University
conference center. The next morn-
President's Cancer Panel
national tumor registries. Please
ing, we will converge on the Hill to
Special Commission On
drop us a line with any suggestions
Fall, 1992
UPDATE
put into practice our newly honed
Breast Cancer
on legislation you would like to see
advocacy skills. We plan to hold a
introduced this year.
fundraising luncheon on Tuesday
Since the inception of this Special
afternoon. Our plans for Sunday,
California Bill
Commission in Spring. 1991. the
SUCCESS SUCCESS
Coalition sponsored research hearings in February 1992 at which
May 2 are still in the works.
Coalition has protested the makeup
SUCCESS
scientists renowned in the field of breast cancer testified to areas of
Please hold the dates! Also. please
of the Commission. The only lay
Congratulations to California advo-
promising but underfunded research. Based upon these hearings, the
drop a line to the Coalition at: P.O.
cates! The California Personal
members of the Commission are its
Coalition determined that an additional $300 million should be spent on
Box 66373, Washington. D.C.
chair, Nancy Brinker, of the Susan
Income Tax law permits taxpayers
This has been a phenomenal year! We
breast cancer research in 1993. for a total of $433 million. "$300
20035 and let us know if representa-
to contribute amounts in excess of
B. Komen Foundation, and Zora
attained our first year's entire legislative
million more" became our rallying cry. We sponsored lobby days in
tives of your organization are inter-
Brown, chair of the Cancer Aware-
their liability for the support of
agenda. When the Coalition announced
Congress at which busloads of women came in to Capitol Hill to meet
ested in attending.
ness Program Services (CAPS) and
specified funds. California recently
our $300 million more campaign, we
with their congressional representatives and lobby for $300 million
board member of the Komen Foun-
passed an amendment to allow
were told by many that it was an
more. We established a hotline through which mailgrams could be sent
February Congressional Breakfast
dation. The Coalition demanded
taxpayers to designate on their tax
impossible goal. We were not deterred
to Congress. We sent out the word through our action network and
NOTE NEW DATE:
On
grassroots patient advocacy repre-
returns that a specified amount in
and we won! For the first time ever,
thousands responded by calling the hotline. We sent the telephone and
February 3, 1993 the Coalition will
excess of their tax liability be trans-
because of the Coalition's work, there is
sentation on the Commission. As a
fax numbers of targeted members of Congress to our members with the
host a Congressional breakfast to
ferred to the California Breast Can-
a meaningful appropriation for breast
result, the Commission opened an
message to phone. fax and visit to demand that Congress appropriate
brief Congressional members and to
additional seat for nominations and
cer Research Fund. created by the
cancer research. We were influential in
the funds.
honor those members who were
the Coalition nominated the NBCC
bill. The money would be appropri-
getting the Mammography Quality
particularly helpful in our cause this
ated by the Legislature to be allocat-
Standards Act enacted and we supported
president, Fran Visco. We have
We initially tried to get the entire $433 million from the domestic
past year. After the breakfast we
ed to the State Department of Health
the Cancer Registries Act which passed.
just learned that the nomination has
budget we were told that the money was not there. Because we did
expect to sponsor our first 1993
Services to make contract or grants
Thanks to everyone who participated.
not give up, the House voted to appropriate $180 million. or an
been approved. The next meeting
lobby day on the Hill to greet the
of the Commission is January 11
to conduct research relating to the
additional $47 million, for breast cancer research. The Senate voted
new Congress and to begin advocat-
and 12 in Atlanta, Georgia, the
prevention, screening, treatment and
for $220 million. We then went to the defense side we started a
ing for our legislative agenda.
cure of breast cancer.
topic is treatment.
campaign based on the theme "1% for Women's Lives Stop Breast
WHAT WE DID
Cancer" we wanted a transfer of I percent of the defense research
Membership Drive
and development budget of $38 billion--or $380 million--to the
Our goal is to double our organiza-
$300 Million More: the Story
domestic side of the budget, $300 million of which would be for breast
1993 Legislative Agenda
tional membership over this next
Note:
cancer. Initially, we became part of Senator Harkin's transfer
year. To that end, we expect to
If there is advocacy news you
amendment--he wanted to transfer $4.2 billion from the defense budget
We are in the process of setting the
launch a membership drive within
want to share with other mem-
The story of how the NBCC and its
to domestic, including $200 million for breast cancer research. That
the next two months. Contact
1993 agenda for the NBCC. While
bers, please drop a note with
members caused the appropriation for
amendment, because it would break the budget agreement. needed 60
we intend to again fight for more
the text to the Coalition post
breast cancer research to more than
NBCC if you need a membership
votes to pass; it failed. Senator D'Amato then introduced our 1%
money for breast cancer research,
office box.
application form. If you are aware
triple in size bears retelling. Of course,
amendment it also failed although it received more votes than any
we also want to put together a
of organizations that are interested
the genesis of the "$300 million more"
other transfer amendment.
in joining the Coalition, please share
package of access legislation deal-
campaign was our commitment to ending
this information with them. If you
ing with access for all women to
the breast cancer epidemic by the year
Sen. Harkin then introduced an amendment to the defense
are a member and have not
high quality screenings, treatment
2000. Recognizing that we needed to
appropriations bill to allocate $210 million of defense dollars to breast
and diagnosis. In addition, we are
develop a plan of how much money
completed a form, please do so as
looking at legislation mandating
"National Breast Cancer Coalition 1992
would be needed to reach our goal, the
soon as possible. Thanks.
4
cancer research this money would
Mammography
Quality
New York, Rhode Island, Vermont
cally changed the recipient and
and resulted in hundreds of calls to
Mrs. Clinton appeared. As Linda
not be transferred to domestic and
Standards Act
and the District of Columbia for the
message as required initially, the
the Coalition with requests for
Byrd Robb. who was also present.
thus would not break the budget
purpose of determining the factors
mailgrams were sent to Rep.
membership applications.
said "These are Can Do Women!"
agreement. This amendment passed
The Coalition's advocacy
contributing to the fact that breast
Natcher, as chair of the House
by a vote of 89 to 4 many senators
contributed to the passage of the
cancer rates in those states are
Labor HHS appropriations subcom-
Media Coverage
NOTICES
initially voted no, but when they
Mammography Quality Standards
elevated compared to rates in other
mittee. Subsequently, they were
saw the amendment was going to
Act. At our September 9 lobby
states.
sent directly to the caller's Senators.
The NBCC has been quoted or
Board Membership
pass, they changed their votes to
day, we attracted additional
Unfortunately, no funds
identified in several national news-
yes. Next, the administration tried
sponsors for this bill. Under the
were appropriated for implementa-
Postcard
papers and magazines over the past
There have been some changes in
to block this allocation. The Office
Act, all facilities must have a
tion of this legislation. The Coali-
few months, including The New
the makeup of the Working Board.
of Management and Budget sent a
certificate to operate, which is
tion intends to advocate this year for
As part of an internal mailing,
York Times, The Los Angeles
Cancer Care has resigned from the
letter to the defense appropriation
conditioned on the facility having
appropriate funding for this Act.
postcards containing the message to
Times, The Philadelphia Inquirer.
Board, while retaining its member-
conference committee stating that
been accredited and inspected. The
vote for $300 million more for
The Baltimore Sun, The Memphis
ship in the Coalition and on the
OMB would consider the money for
accreditation program mandates
HOW WE DID IT
breast cancer research. to be mailed
Daily News, Minneapolis City
Access Task Force. The Board
breast cancer research domestic,
strict requirements for equipment,
to the sender's Senators were sent
Paper, Time Magazine, Family
approved the board membership
even though the Senate had voted it
personnel experience and training.
Lobby Days
out to 3,000 names and addresses.
Circle and The Soroptimist Maga-
applications of Breast Cancer Action
in the defense budget. This
routine quality control procedures,
zine. We were featured in Morton
of San Francisco, California, 1 in
threatened to have the practical
annual survey by a qualified medical
Much of our success stems from the
Faxes And Telephone Calls
Zuckerman's editorial in the No-
9 of Long Island, New York,
effect of killing the allocation it
physicist, and peer-review of
lobby days we sponsored this past
vember 23 issue of U. S. News and
UCLA Breast Center, and approved
would break the budget agreement.
clinical images. The measure
year. In June, with no more than
At various points throughout the
World Report. The Coalition is
a seat for a representative of the
The Coalition put its action network
establishes a National Advisory
48 hours notice, we managed to
process, the names. telephone and
often featured in the Cancer Letter.
Washington, D.C. area chapter of
into high gear. Through our
Committee, made up of patient/
bring about 70 women to Capitol
fax numbers of important committee
the Blue Paper and similar periodi-
the Coalition.
national action network, telephone
consumer, medical, and technical
Hill to meet with their Congressio-
members were sent out to our grass-
cals.
calls, faxes, and in person visits
representatives, to make recommen-
nal representatives and to rally
roots members through the National
NBCC Computer Network
occurred. We staged a vigil on the
dations to the Secretary of Health
outside the room in which the
Action Network with the message to
Hillary Clinton Visit
Senate steps we would not leave as
and Human Services on the
House appropriations subcommittee
contact those committee members
We now have on-line capability
long as Congress was in session,
implementation of the law. The
was meeting. Several Coalition
and urge for passage of legislation.
On Wednesday, October 14, 1992,
through the Cancer Forum in the
until they approved the breast
measure also requires a study to
members were in the committee
in Williamsburg, Virginia, several
CompuServe network. As of
cancer allocation. The Congress did
determine whether the new program
room for the start of the meeting.
SUCCESS
SUCCESS
members of the Coalition participat-
January 1, 1993, you can find us in
not succumb to the OMB threat, and
will result in improved quality and
The Committee voted to proceed in
ed in a round table discussion on
the $210 million for breast cancer
SUCCESS
the National Breast Cancer Coalition
access to mammography, and
closed session (Rep. Early from
breast cancer with Hillary Clinton,
conference. If you are already on
remains in the DOD budget.
whether the reduced frequency of
Massachusetts was the only member
that was moderated by the NBCC
CompuServe. please join us. If you
poor quality mammography will
who opposed closure). We then
Our National Action Network has
president. Originally, the meeting
would like to become a member of
We now intend to demand a
improve the early detection of breast
split up into groups and went to
grown to thousands of members.
was set with President-elect Bill
CompuServe, let us know. We
structure through which we will
Cancer.
visit various legislators.
All of this led to our amazing suc-
Clinton, but due to his having to
have a number of member packets
have a say in how the money is
cess this past year, but we all recog-
rest his voice for a debate, Mrs.
that can be distributed to our action
spent both on the domestic and the
On September 9, 1992 we held a
nize how much more there is to do.
Clinton participated. It was an
network.
defense sides. The Coalition has
The Cancer Registries Act
lobby day in the Senate At least
We have just begun.
exciting afternoon, in more ways
developed a relationship with the
two hundred women attended.
than one. The Coalition Board was
Year-End Appeal
Army officers responsible for
The Coalition supported passage of
Every Senator was visited and was
RECENT ACTIVITIES
meeting in Washington, D.C. and
oversight of this money and will
the Cancer Registries Act which has
given a packet of information about
planned to take a bus to
At our November meeting
continue to meet with repre-
been signed into law. The Act
the Coalition and the need for more
Testimony
Williamsburg, leaving at 11:30 a.m.
the Board established the
sentatives of NIH and NCI.
establishes a National Program of
money -- $300 million more -- for
for the 3:30 p.m. round table. At
hiring of support staff as
Cancer Registries to make grants to
breast cancer research and for pas-
The Coalition testified before the
2:55 p.m., 13 miles outside of
a #1 priority. We need
This years' allocation for breast
States or others designated by a
sage of the Mammography Quality
Senate Appropriations Subcommit-
Williamsburg, the bus broke down!
your help. Please solicit
cancer research at least a $287
State to operate the State's cancer
Standards Act.
tee, the House Subcommittee on
Undaunted, the fifteen board mem-
others and make a year-
million increase is the first
registry, to support the operation of
Health and the Environment (the
bers on board immediately jumped
end contribution to the
meaningful appropriation for this
population-based, statewide cancer
Hotline
Committee on Energy and Com-
off the bus, flagged down any vehi-
NBCC at P.O. Box 66373,
disease. It was accomplished by the
registries in order to collect certain
merce), the House Select Aging
cles that would stop, and proceeded
Washington, D.C. 20035.
hard work and commitment of the
data for each form of in situ and
We sponsored a hotline to Congress
Committee, Special Hearings on
to the Williamsburg Lodge in a
Let's make this year as
members and volunteers of the
invasive cancer (with certain excep-
through Western Union. Through
Breast Cancer, and the President's
caravan of pick-up trucks, automo-
successful as the last!
Coalition.
tions). The Act also legislates a
the NBCC hotline, several thousand
biles and sheriff's cars. Board
Cancer Panel, Special Commission
study in the states of Connecticut,
mailgrams were sent to Congress in
on Breast Cancer. Our testimony
members pulled up in front of the
Delaware, Maryland, Massachu-
support of the appropriations and
hotel at 3:25, rushed down the hall
given before the House Select Aging
setts, New Hampshire, New Jersey.
quality standards bill. We periodi-
Committee was shown on C-Span
and were in place moments before
2
3
THE
CANCER
Vol. 18 No. 32
Aug. 7, 1992
(c)Copyright 1992 Cancer Letter Inc.
LETTER
Price $215 Per Year US, Canada
$240 Per Year Elsewhere
P.O. Box 15189 WASHINGTON, D.C. 20003 TELEPHONE 202-543-7665
Breast Cancer Coalition To Congress: 'Find A Way
To Fund The War;' Bypass Level Is Not Enough
It looked as though Fran Visco was demanding money for a disease
other than cancer.
She did not exchange nods with other cancer activists, did not
shmooze with the lobbyists who accompanied them. Instead, Visco sat
House Preserves Funds
down with a group of women, several of them wearing ribbons
For Space Station;
(Continued to page 2)
Cancer Societies
In Brief
Reiterate Support
Sullivan Rejects Oregon Medicaid Rationing Plan;
For $170 Million
Howe To Head National Marrow Donor Program
Increase For NCI
OREGON'S MEDICAID rationing plan was rejected this week by HHS
Page 4
Secretary Louis Sullivan, who said the controversial program to expand
Medicaid services to the poor by excluding some services appeared to
violate the Americans with Disabilities Act. Sullivan said the state's
Panel Suggests Test
decision about which services to exclude "was based in substantial part
Of Paid Advertising
on the premise that the value of the life of a person with a disability is
For ACS: Roundup
less than the value of a life of a person without a disability." The plan
would have excluded cancer treatment for Medicaid beneficiaries who
Page 5
have less than a 10 percent chance of five year survival (Cancer
Economics, March 1992)
CRAIG HOWE has been named chief
executive officer of the Minneapolis-based National Marrow Donor
ACS Prostate Cancer
Program. Howe was associate professor of medicine and director of the
Recommendations
bone marrow transplant program at Medical College of Virginia.
Move Forward
AMERICAN CANCER Society Clinical Research Professorships were
Page 6
awarded to to Rodney Withers, Univ. of California (Los Angeles) and
Alan Solomon, Univ. of Tennessee Medical Center. Each will receive
$250,000 for five years. Dartmouth College received a $1 million special
institutional grant from ACS to establish a Center for Psycho-Oncology
RFAs Available
Research, under the direction of Peter Silberfarb.
PACIFIC YEW ACT
Page 7
has passed the Senate by voice vote and awaits signing by President
Bush. The House passed the bill on July 7. The act provides for
management of the yew tree, the source of the drug taxol.
CHILDRENS CANCER Group is seeking a pediatric oncologist-
hematologist for the position of associate chairman for group operations.
This new position will report to the group chairman and be responsible
for operational management of the group and its office in Arcadia, CA,
in association with USC School of Medicine. Appropriate clinical activities
and academic appointment can be arranged. Experience in cooperative
clinical trials required. Prospective applicants may write to: Chairman,
Children's Cancer Group, PO Box 60012, Arcadia, CA 91066-6012.
Breast Cancer Coalition Goes Against
increase spending on breast cancer to $433 million,
almost double the bypass budget level of $220
'The Rules,' Demands $300 Mil. More
million, which NCI says would meet all opportunities
(Continued from page 1)
in breast cancer research in FY 1993.
emblazoned with "$300 million more," the slogan of
"I think that if they had taken the same tactic, but
the Breast Cancer Coalition over which Visco presides.
asked for something more in line with the bypass
Taking the stand before Senate Labor, HHS,
budget, we would have been more supportive of
Education Appropriations Subcommittee, the
them," said a lobbyist for one of the professional
diminutive 44-year-old Philadelphia trial lawyer and
societies.
breast cancer survivor assumed the tone unheard of
With the congressional appropriations cycle half-
when cancer groups come to ask Congress for money:
over, the Breast Cancer Coalition has not been able to
"When the men in suits all but destroyed the
bring additional funds into the cancer program.
savings and loan system in this country, the nation's
However, this is not to suggest that the coalition has
economic stability was threatened and this Congress
been ineffective. Strapped for funds yet unable to say
responded with billions of dollars.
no to a vocal constituency, Congress has done what
"Because our cities are in danger of extinction, this
it could: mandate a diversion of funds from existing
Congress has found a way to appropriate emergency
NCI programs.
funds for the urban crisis.
Last week, the House Appropriations Committee,
"When this administration decided to wage a war,
apparently in response to pressure from the Breast
you found $7.5 billion to fund it.
Cancer Coalition and its supporters in the
"Women have declared war on breast cancer and
Congressional Caucus for Women's Issues, mandated
you had better find a way to fund that war.
a $40 million increase in NCI's spending on breast
"Women refuse to fight with other diseases for
cancer research. Altogether, $70 million was
which no funds are available. That would be going by
reallocated to breast, cervical, ovarian and prostate
existing rules, and too many women die under those
cancer programs (The Cancer Letter, July 31).
rules.
For years cancer researchers looked wistfully at the
"It is not enough that we can all say breast cancer
appropriations hauled in by the politicized AIDS
aloud. And it is not enough to say you want to help
activists. What would happen if cancer patients
us.
became as politicized? Would more money suddenly
"We will no longer be passive. We will no longer be
be found for cancer?
polite. We can no longer afford to wait while Congress
Now the time for wondering has passed.
gets around to significant, decent funding for breast
Like it or not, breast cancer patients have moved
cancer.
beyond battling paternalistic surgeons. Politicized and
"We implore you: you must find a way to
militant, they are taking on Congress, the President
appropriate the additional $300 million for breast
and NCI.
cancer research now. We can accept to less."
From Stop the War to Stop Breast Cancer
From the perspective of professional societies, NIH
It is certainly a phenomenon where political style
and NCI, this is an outlandish figure that would
and political tactics are firmly rooted in demographics:
the kids who once opposed the war are starting to get
suspicious mammograms.
THE CANCER LETTER
"The nature of breast cancer is such that it is
starting to affect people who grew up in the sixties,"
Editor: Kirsten Boyd Goldberg
Visco said to The Cancer Letter. "We are activists.
Founder & Contributing Editor: Jerry D. Boyd
That's our nature."
Associate Editor: Paul Goldberg
This shared political temperament made it natural
PO Box 15189, Washington, DC 20003
for the new generation of cancer advocates to accept
Tel: (202) 543-7665 Fax: (202) 543-6879
the lessons of AIDS activism.
Subscription rate $215 per year North America, $240
"From AIDS activists we learned what would
elsewhere. ISSN 0096-3917. Published 48 times a year by
The Cancer Letter Inc., also publisher of The Clinical Cancer
happen when you open your mouth and make
Letter. All rights reserved. None of the content of this
demands," Visco said. "That's where we are now, and
publication may be reproduced, stored in a retrieval system,
that seems to be what the people in power respond
or transmitted in any form (electronic, mechanical,
to. We are grateful to AIDS activists for showing this
photocopying, facsimile, or otherwise) without prior written
to us."
permission of the publisher. Violators risk criminal penalties
The Cancer Letter
Page 2
Aug. 7, 1992
The newly politicized stance is reflected in the
Nancy Brinker's Susan G. Komen Foundation, chose
coalition's rhetoric.
not to join the coalition. The American Cancer
"I recognize how starkly dissimilar my [Senate]
Society, also a supporter of the bypass budget, chose
testimony was from other testimony given that day,"
a different strategy.
Visco said. "I thought it was time to give this kind of
"We knew from the outset that there would be
a speech. I thought it was time for them to understand
events in which we would not care to participate,"
that we are serious, that we mean this, and that we
said Joann Shellenbach, spokesman for ACS and a
are not going to go away."
member of the Breast Cancer Coalition board.
The Breast Cancer Coalition was started early in
However, the benefits of being part of an emerging
1991 by leaders of CancerCare, Cancer Patients Action
political force outweighed the potential costs, she said.
Alliance, Faulkner Breast Center, Mary Helen Mautner
"We've reached a level of understanding with their
Project for Lesbians with Cancer, National Coalition for
national board," Shellenbach said. "It's the local
Cancer Survivorship, National Alliance of Breast Cancer
chapters with whom we have problems to iron out."
Organizations, Women's Community Cancer Project
Along with the National Coalition for Cancer
and Y-ME. Since then, 160 organizations, including the
Research, ACS is on record asking for a $170 million
American Cancer Society, joined the coalition.
increase for the entire NCI in FY93 and is opposed to
Last October, the coalition decided to flex its
diverting funds from existing NCI programs.
muscles by deluging official Washington with letters
Later this month, at a meeting in Washington, a
demanding additional funds for breast cancer research.
group of members of the society's public issues
The goal was to generate 175,000 letters, one for each
committee will gather to decide the future of ACS
woman diagnosed with breast cancer last year.
membership in the coalition.
Instead, over 600,000 letters were generated. About
"I suspect that we will give it another year,"
140,000 letters, addressed and delivered to the White
Shellenbach said. "The coalition and ACS have
House, are yet to be acknowledged by the Bush
disagreed on certain matters, but we haven't been
Administration, said Sharon Green, head of Y-ME and
embarrassed. We've disagreed, we've been comfortable
one of the founders of the Breast Cancer Coalition.
about doing it."
After some negotiations, a White House staff
Joanne Howse, the Breast Cancer Coalition's
member showed up at the side entrance of the Old
Washington lobbyist and partner in the lobbying firm
Executive Office Building to accept the boxes.
Bass & Howse, said she would like to see ACS remain
According to Green, the staff member stood idly while
in the coalition.
late stage breast cancer patients were placing the
"If they decide to leave, from my perspective it
boxes on the conveyor.
would be a serious loss," Howse said. "But again, they
"Our feeling was, they are probably on the way to
obviously have to be supportive of all cancers and
the shredder," Green said to The Cancer Letter.
they have their own political considerations."
Room for 'Moderates?'
T-shirts at Rayburn
The $300 million figure was derived last February,
Earlier this year, under questioning by Rep. William
after the coalition held a conference on prevention,
Natcher (D-KY), NIH Director Bernadine Healy said
epidemiology, basic and clinical science.
that "despite NIH's enormous support of women's
Following the conference, the coalition's "research
health research, I think it would be destructive to
task force," which includes activists as well as
planning and destructive to the broad goals of the
physicians and PhDs, arrived at the number.
NIH to have $500 million [including $300 million for
Among the recommendations considered was one by
breast cancer] earmarked specifically for women's
Virginia Soffa of Vermont's Breast Cancer Action
research."
Group. By comparing incidence vs. federal spending on
Similarly questioned by Natcher, NCI Director
AIDS and breast cancer, Soffa interpolated that breast
Samuel Broder asked: "Sir, are you asking me for my
cancer research should get $4.3 trillion to reach
professional judgment?"
equivalency with AIDS.
NATCHER: "Yes, I am."
While reasonable to some activists, the $300 million
BRODER: "Our FY 1993 bypass budget request for
figure amounted to heresy in the eyes of the groups
breast cancer was approximately $220 million."
committed to pursuing another ambitious goal: closing
These statements notwithstanding, Howse said she
the gap between NCI's bypass budget and the funds
is convinced that Broder "is not going to turn the
appropriated to the Institute.
money down if it's there."
Some patient advocacy groups, most prominently,
The infusion of $300 million for breast cancer
The Cancer Letter
Val 18 No Dage 3
research could force NCI to operate more efficiently,
In Congress
she said.
House Preserves Space Station;
"When they tell us how long it takes to get the
grants out, women become very impatient," Howse said
Societies Support $170 Mil. Raise
to The Cancer Letter. "Let's get the money out. Let's
The cancer program suffered another setback last
not create the kind of bureaucracy that can't get the
week as the House voted to preserve funding for the
money out efficiently. Let's do something different."
space station. The amendment to kill the $30 billion
Visco is similarly confident. "We can show [Broder]
project was expected to be followed by a move to put
that the money would not be wasted," she said.
about $350 million into health research.
As the Breast Cancer Coalition stood by its demand,
The amendment to kill the $30 billion space
the $300 million figure made its way into a letter
station, introduced by Reps. Bob Traxler (D-MI) and
signed by 20 members of the Congressional Caucus on
Bill Green (R-NY) was rejected by a 237 to 181 vote.
Women's Issues. Later, the figure appeared in the NIH
It was to be followed by an amendment by Rep.
reauthorization bill.
Richard Durbin (D-IL).
Then, as members of the Labor, HHS, Education
In another apparent setback, the Senate
Appropriations Subcommittee went to a closed session
Appropriations Committee restored the funds for the
to mark up the FY93 budget, women in T-shirts
$8.25 billion superconducting super collider.
inscribed with demands for "$300 million more" lined
Observers say that even if these or other projects
the halls of the Rayburn House Office Building.
get the ax before the end of the appropriations cycle,
"We aren't doing street theater, we aren't
it appears doubtful that the funds would be applied
interrupting meetings like ACT-UP," said Y-ME's Green.
to anything other than deficit reduction.
"What we do is line the halls. They knew we were
Earlier this year, cancer program lobbyists
there. We did not have to shout."
expressed hopes that Sen. Dale Bumpers (D-AK)
Most recently, the coalition's goals got another
would introduce a series of amendments that would
boost when Democratic presidential contender Bill
cut the defense and space budget and divert a portion
Clinton told a group of breast cancer patients that he
of the savings to medical research.
supported the $300 million increase.
Whatever Bumpers' ultimate plans, the bills
Looking for Funds
Bumpers introduced last month (S 2930 through S
Howse said she was disappointed to see "one
2934) mention no diversion of funds to medical
disease played against another disease" in the House
research. The entire $10 billion he proposes to cut
report.
from the FY 1993 budget would be applied to deficit
"You can't get any money from Labor, HHS," she
reduction.
said. "There isn't any money there. We want to get it
elsewhere." Most likely, the group would call for cuts
Advocates of the cancer program addressed the
in the defense research and development budget, she
Senate Labor, HHS Appropriations Subcommittee,
said.
reiterating their request for additional $170 million
"We believe that we don't have to take money from
for NCI over the President's FY 1993 budget request.
other diseases," Howse said. "We are trying to figure
"The House has recommended the NCI funding level
out a way to increase the pie for breast cancer
$11 million below the President's request," said Ellen
research. What we would like to see is that we
Stovall, executive director of National Coalition for
increase the pie for everyone, so we are seen as
Cancer Survivorship.
heroines."
"This is most unfortunate since the Congress made
So far, attempts to cut the superconducting super
progress last year in restoring the funding base of
collider and the space station have failed in Congress,
NCI. Overall the House provided an increase of 3.1
and if the cuts are made, it is far from certain that in
percent to the entire National Institutes of Health
the current fiscal climate Congress would apply the
with only a 2.4 percent increase allocated to the
funds to anything other than deficit reduction.
National Cancer Institute. We urge you not to repeat
Be that as it may, the Breast Cancer Coalition is
the pattern of NCI receiving an increase below that of
preparing for its next political action:
the rest of the NIH."
Not revealing the details, Howse says only that a
Stovall spoke on behalf of the National Coalition
large number of coalition members will come to
for Cancer Research.
Washington on Sept. 9, the first day of Senate markup
Speaking for the American Society of Clinical
of the HHS budget.
The Cancer Letter
Page 4
Aug. 7. 1992
Mammography
Q:
I am a women who is 42 years old and am concerned about the
issues surrounding mammography screening. Under the Health
Security Act will it be difficult to get this screening and
will I have to pay a lot of money for this service?
A:
The Health Security Act is deeply committed to womens'
health issues. The plan is designed to work toward ensuring
appropriate mammography screening in order to reduce the
tragedy of breast cancer. Mammography screening is included
for women over the age of 50, at no cost every two years.
This recommendation was based on the best scientific
literature available today, including the National Cancer
Institute. For all other women mammography screening will
be covered when it is medically necessary or appropriate.
This decision will be made between a women and her
physician. For these women, mammography will be covered
with the same co-payments, just as any other medical
procedure.
BH
BASS and HOWES, Inc.
Patti-
July 16, 1993
go
Melanne Verveer
I
Deputy Chief of Staff to the First Lady
Old Executive Office Building
White House
Minh This can in oct.
Washington, DC 20500
Dear Melanne,
I wanted to bring you up to date on the National Breast Cancer
Coalition's (NBCC) Campaign to obtain 2.6 million signatures, which
represent the number of women who have breast cancer in this
country.
The NBCC has asked President Clinton to invite 200 breast
cancer activists most responsible for collecting the petitions and
others from the scientific community, private industry and the
world of public policy to a public ceremony on October 18, 1993 in
the Rose Garden where we can present the petitions to him.
We have been working with a number of key individuals at the
White House - Carol Rasco, Assistant to the President for Domestic
Policy, Doris Matsui, Deputy Assistant to the President (see
enclosed letters), and Marcia Hale, Director of Presidential
Scheduling to name a few. They have been very supportive of this
endeavor, and we are appreciative of their efforts. Anything you
can do to help will be greatly most appreciative to make this event
happen.
Looking forward to talking with you soon about possible next
steps to pursue for this plan of action.
Warmly,
Janne
Joanne
Howes
Enclosure
Kim Tilley
1601 Connecticut Avenue, NW. Suite 801. Washington, DC 20009 Phone: 202-328-2200 Fax: 202-667-0462
BH
BASS and HOWES, Inc.
June 25, 1993
Ms. Doris O. Matsui
Deputy Assistant to the President
Deputy director of Public Liaison
White House
Washington, DC 20500
Dear Doris,
As promised, enclosed is a letter to President Clinton requesting that he meet
with representatives of the National Breast Cancer Coalition to receive the 2.6 million
signatures representing the number of women living in this country with breast cancer.
It is the hope of the NBCC that the 200 breast cancer activists most responsible
for collecting the petitions would be invited to participate in a public ceremony at the
White House on October 18, 1993. In addition, Members of Congress, public policy
makers and scientists could be added to the list.
This is an excellent time to hold this event. Not only is October designated
Breast Cancer Awareness Month, but the message will be well timed in the midst of the
health care reform debate. Preventing disease is an important way to restrain health
care costs. Six billion dollars a year are spent on treating breast cancer; finding the
cause of and cure for breast cancer will save dollars as well as lives.
We have had initial conversations with Carol Rasco and Melanne Veveer at the
White House, and Sarah Kovner, Special Assistant to Secretary Shalala about developing
the national strategy that President Clinton would announced. We will keep you
apprised of those developments.
We will be in touch with you shortly to learn how the event is developing on your
end.
Warm regards,
Joanne
Jóanne Howes
[GO] Washington DC Phone:202-328-2200
OCT 15 '93 12:46 MANSION-
P.2
We mean something new, and real, when we talk about a national strategy to end the
breast cancer epidemic: 2 strategy that goes beyond research. This strategy will require a
public\private partnership and will only work if every relevant administrative agency and the
Congress are also partners in its design and implementation. This is not just an issue for the
National Institutes of Health, but also for the Department of Education, Commerce, the
Environmental Protection Agency, the Department of Labor, the Department of Defense and
others. Most importantly. women with breast cancer and other breast cancer advocates -
consumers - must be at the table from day one, involved on an equal basis at every level of the
process. We can no longer afford "business as usual." It is time to shake up the system. There
are many volunteers within the leadership of the business community who want to be involved
in this effort. Let us mobilize these private resources. We must find a way to foster
communication and coordination of effort among scientists and medical professionals, to better
educate the medical profession, to form partnerships with patient advocates and the scientific
community. Any strategy must find ways to remove roadblocks to innovative research, to
coordinate and oversee the research performed by private foundations, to inform and educate the
public about access and care.
The President should use the fact that he appointed Fran Visco to the President's Cancer
Panel and announce that Fran will work with Secretary Shalala or whoever will be chosen within
the Administration to lead this effort, to begin pulling together the process for a strategic plan.
OCT 15 '93 12:45 MANSION
P.1
EXECUTIVE MANSION
138 Eagle Street
Albany, New York 12202
Telephone: (518) 463-2295
Fax No:
(518) 434-9989
TO:
Patti Solis for the personal attention of Hillary Clinton
FROM:
Matilda R. Cuomo
DATE:
October 15, 1993
NUMBER OF PAGES TO FOLLOW:
one
MESSAGE:
PERSONAL AND CONFIDENTIAL
To elaborate and clarify the very brief
note I gave you, please read the following:
DETERMINED TO BE AN
ADMINISTRATIVE MARKING
INITIALS: SAB DATE: 7/25/14
This facsimile transmission may contain confidential or privileged
information which is intended only for use by the individual or
entity to which the transmission is addressed. If you are not the
intended recipient, you are hereby notified that any disclosure,
dissemination, copying or distribution of this transmission is
strictly prohibited. If you have received this transmission in
error, please notify us by telephone immediately so that we can
arrange for the return of the documents to us at no cost to you.
FOR OFFICE USE ONLY: SENT BY: Ann Smerznak
TIME: 1pm
SPECIAL REPORT
The Politics of Breast Cancer
A grass-roots movement consisting mostly of breast cancer survivors persuaded Congress to double
funds for the disease; its success is rattling the biomedical research establishment
Breast Cancer Research
When Kay Dickersin went to a gathering in
A Special Report
their daughters will get caught in the same
Washington in May 1991, she wasn't quite
mill. That feeling makes them angry, and it
sure what she was getting into. The meeting
News Reports
drives their political movement.
had been billed as a group of women who
The Politics of Breast Cancer
616
wanted to influence government policy on
Search for a Killer: Focus Shifts From 618
Political prowess
Fat to Hormones
breast cancer research. And that was a subject
Anger, of course, isn't enough on its own to
Zeroing in on a Breast Cancer
622
in which Dickersin had a keen-and keenly
Susceptibility Gene
drive a political movement In NBCC's case,
personal-interest. Four years earlier she had
Genetic Counseling: A Preview of
624
its clout stems from several other factors as
had surgery after a diagnosis of breast cancer. It
What's in Store
well. One is numbers. Breast cancer is one of
struck out of the blue: Dickersin had no family
Cellular Changes on the Route to
the commonest cancers, striking 180,000 U.S.
history of breast cancer, nor any of the usual
Metastasis
626
women each year, killing 46,000, and leaving
warning signs or symptoms. One thing she did
Hormone Receptors: Dangerous Loss
628
in its wake a survivor group of 1.5 million.
have, though, was knowledge: She was a Ph.D.
Perspectives
NBCC established a broad base with captains
student in epidemiology at Johns Hopkins
Current Approaches to Breast
630
in every state. A second factor is political
when she was diagnosed, and she had "reams
Cancer Prevention
know-how, which comes from people like Fran
Maureen Henderson
of files" on breast cancer, which she had col-
The Development of Biological
631
Visco, a litigator for a Philadelphia law firm
lected out of an interest in the subject. It was
Therapies for Breast Cancer
who is now NBCC's president. Third is a strong
the combination of personal experience and
Marc E. Lippman
dose of scientific and medical expertise, con-
expertise that she wanted to put at the ser-
Related Article
tributed by volunteers like Dickersin and Love,
vice of the informal gathering of women in
Hormonal Chemoprevention of
633
who cochair NBCC's research committee.
Washington.
Cancer in Women
But even this constellation of factors might
That combination of personal drive and
Brian E Henderson, Ronald K.
not have been enough if NBCC hadn't hit
technical knowledge has become a hallmark
Ross, and Malcolm C. Pike
Washington at a time when its targets were vul-
of the informal group Dickersin joined, which,
News editor: Colin Norman
Copy editor: Troy P. Gately
nerable to a push in the right direction. NIH
1 year later, has become the most visible
Designer: Diana DeFrancesco
had declared that women's health needed
lobby to stalk the National Institutes of
more attention. And, in 1992, many senators
Health (NIH) since the AIDS activist group
siphon dollars from other basic research.
were trying to overcome the embarrassment
ACT UP began making a loud noise in the
And there are conflicts even within the
of the Clarence Thomas-Anita Hill hear-
streets of New York. The National Breast
psyches of those who, like Kay Dickersin, are
ings, proving to constituents that they cared
Cancer Coalition (NBCC), as it's known,
both scientists and breast cancer activists.
about women's issues. The chairman of the
along with other groups, achieved a breath-
As a scientist, Dickersin says she finds it "pain-
Senate appropriations committee in charge of
taking political victory: They lobbied Con-
ful" to be identified with a political move-
NIH funding-Senator Tom Harkin (D-IA)
gress and persuaded it to double the amount
ment that aims to target research into one
-had seen two sisters die of breast cancer
of money it spends on breast cancer research.
area. But she says that experience has shown
and was determined to help the cause.
Some of the increase went to the National
her that the cancer research program needs
In exploiting this opening, NBCC presi-
Cancer Institute (NCI), raising its breast can-
shaking up. She agrees with well-known sur-
dent Visco and Joann Howes, a political con-
cer budget from $133 million to $197 mil-
geon Susan Love, a fellow NBCC member,
sultant at the Washington firm of Bass and
lion, but by far the larger amount ($210 mil-
who says the coalition wants to break open
Howes, say they consciously followed the
lion) went to the Department of Defense, to
what it regards as NCI's cliquish inner circle
tactics of AIDS activists. To get their foot in
be administered by the U.S. Army (Science,
and bring in new faces. "We have to stop
the door, they had to show they had broad
30 October 1992, P. 732).
business as usual. We have to change the
support, which they did in the fall of 1991.
But along with that success has come con-
direction and really put our emphasis on ba-
They solicited written appeals for increased
flict: between activists, who are demanding a
sic science and prevention, and not such a
NCI spending on breast cancer, hoping to
role in deciding how research money should
large emphasis on treatment," says Love.
get 175,000 letters; instead, in 6 weeks they
be spent, and scientists, who stoutly defend
Dickersin is also motivated by the fact
received 600,000. They delivered them to
the existing system. At a recent meeting, for
that two of her sisters have since been diag-
the White House and Congress, then fol-
example, Frederick Becker, research chief of
nosed with breast cancer and the fourth and
lowed up with a technical meeting to estab-
the M.D. Anderson Cancer Research Center
youngest sister waits, fearing the worst. It's
lish scientific credibility.
in Houston, said: "The tidal wave of
incredibly frustrating, Dickersin says, to think
In one of NBCC's key decisions, the group
advocacy may wash away certain bulwarks
that "we have to sit and wait for each sister to
organized its own "research hearings" on
of basic science that have been the greatest
get it, and others have to sit and wait for their
Capitol Hill in February 1992. The activists
contributors towards the potential for cancer
daughters to get it," while nothing seems to
invited top researchers to come and speak,
prevention and cure Their chief worry IS
change. She knows women in NBCC with
asking whether the field could use more funds.
that popularity rather than quality could be-
breast cancer-daughters of women who died
Fifteen spoke, including Marc Lippman of
come important in determining what gets
of it-who are "getting the same chemo, the
Georgetown University, Maureen Henderson
funded, and that these targeted funds could
same radiation" their mothers got. They fear
of the Fred Hutchinson Cancer Research
616
SCIENCE
VOL. 259
29 JANUARY 1993
Center in Seartle, Darcy Spicer of the Uni-
establish a "formal mechanism" through
versity of Southern California, and Graham
which to exchange information and advice
Colditz of Harvard. To no one's surprise, they
funding. NBCC came up with a proposed
1993 increase for NCI of $300 million, spelling
b & W
out categories into which it should be put.
The number may have sounded like pie-
LAURA SIKES/AMERICAN CANCER SOCIETY
with Broder. And they want every significant
revealed that their work could use additional
A
subsegment of NCI to have "consumer input"
Some of these requests have upset bio-
medical leaders such as Becker of the M.D.
Anderson Clinic and a member of the NCAB.
traps to rules
He says others scientists have told him they
in-the-sky to many old timers. But, thanks to
agree with an impassioned speech he gave at
Senator Harkin's skillful maneuvering, Con-
the advisory board meeting last month, in
gress came through with more than two-thirds
which he stressed the importance of nontar-
of the sum the coalition was asking for. Be-
geted research. He pointed out that some
cause Congress had agreed to a cap on domes-
discoveries crucial to understanding breast
tic spending, however, the money ended up
cancer today-such as information about on-
in the defense budget. Pentagon defenders
cogenes and tumor suppressor genes-came
like Senator Daniel Inouye (D-HI) objected
out of highly specialized work on adenoviruses
that it was wasteful and brazenly political to
and retinoblastoma. He worries that the trend
carve up the military budget this way, even
toward earmarking funds will make it harder
for a good cause like medical research. But
to support speculative research.
Harkin pointed to a clause already approved
NCI chief Broder, though he is trying to
by military stalwarts in the House that ear-
calm these troubled waters, also is concerned
marked $25 million in Army money for breast
that the emphasis on breast cancer may lead
cancer research in 1993 and set aside another
to neglect of basic biomedical science. He
$7 million for an unnamed "institution in the
notes that "our commitment to breast cancer
Breast Cancer Funds
Northeast" Though no document says so, any
has increased 177% in recent years" while
appropriations committee aide can tell you the
4
NCI's overall budget has grown 35%. He
phrase refers to the University of Pittsburgh,
NCI
worries about the lack of "balance" that's
whose interests are guarded by two members of
Army
creeping into the budget, citing the cutback
the defense appropriations subcommittee:
Republican Joseph McDade (R-PA). It be-
Dollars (hundreds of millions)
3
this year in NIH's general medical science
chairman John Murtha (D-PA) and ranking
funds as an indicator of potential trouble in
the future. Trying to respond to changing po-
came clear that opposition to Harkin's move
2
litical winds, he worries, could erode the agen-
was not so much a matter of principle as who
cy's research strategy and deprive esoteric
would get the funds-and how much. Once
fields of support. Yet Broder agrees that "we
this became clear, the Senate debate came to
have to have an open dialogue" with the pati-
1
an end and Harkin's proposal won
ent activists, pointing out that it was he, after
As a result, the Army now has a new
all, who invited them to address the NCAB.
mission and $210 million to spend on it.
Broder has clearly heard the message. Last
Because it doesn't have a peer-review system
0
81
82
83
84
85
86
87
88
89
90
91
92
93
September, he submitted an NCI budget re-
comparable to NIH's, the U.S. Army Medi-
Year
quest for 1994 that seems to go a long way
cal Research and Development Command
toward doing what the breast cancer lobby
(USAMRDC) is asking for some help from
Cause and effect. Activists lobbied for a big
would like. The total amount requested for
the Institute of Medicine (IOM). General Rich-
increase; $210 million ended up in the Army.
breast cancer research, for example, jumps
ard Travis, USAMRDC's chief, told Science
from the $197 million appropriated this year
in a recent telephone interview that in De-
Visco and Love laid out a manifesto of pro-
to $449 million. In addition, NCI is coordi-
cember IOM agreed to pull together an ex-
posed changes. Members of the board were
nating a new, NIH-wide program to attack
pert panel that will first, rule on the appropri-
shocked to learn how intimately the activists
breast cancer. It is also launching a series of
ateness of his strategy for spending the money,
want to become involved.
"specialized programs of research excellence"
and second, advise the Army on how to orga-
NBCC wants at least two study sections
(SPORES) aimed at getting the latest science
nize and conduct a peer-review program. Travis
(volunteer science panels that conduct NIH's
into clinical trials and treatment practices as
says his strategy is to avoid duplicating basic
peer review) devoted to breast cancer, and
rapidly as possible, the first batch of which
scientific research of the kind done at NCI
they want their own members invited to sit on
will be focused on breast and prostate cancer.
and to focus instead on "mid-risk, high-pay-
these panels. This would set a new precedent
Although Broder says these changes are
off" projects. However, if the IOM advisers
for NIH, and Samuel Broder, NCI's director,
coming about because "a number of opportu-
tell him he should focus exclusively on basic
grumbles that people who want to do this just
nities in breast cancer are unfolding," it's
science, he's ready to do that instead. Travis
"don't understand how NIH works." By defini-
clear that some of them may not be purely
hopes to begin soliciting proposals next
tion, peer review must be conducted by peo-
scientific opportunities. After meeting with
spring. The one kind of project he does not in-
ple with expertise in the area under review,
NCI's top brass and reviewing the budget
tend to fund is the "bricks and mortar" variety.
Broder says, though he welcomes nonexperts
recently, Susan Love says, "They are listen-
on oversight panels like the NCAB. Here,
ing; the dialogue is starting." Broder has pro-
A seat at the table
again, he faces new demands: Cancer activ-
posed an aggressive new plan, which, accord-
Having won money for their cause, the ac-
ists want a seat on the NCAB, and they also
ing to Love, is "exactly the kind of thing we
tivists are not about to stop there: They want
want an NCAB subcommittee devoted exclu-
want to see." Now the coalition is gearing up
a say in how the funds are spent. At a meet-
sively to breast cancer. They would like to be
for another lobbying effort in 1993 to make
ing NCI's National Cancer Advisory Board
included in groups that monitor data coming
sure that NCI's aggressive plan gets funded.
(NCAB) on 14 December, NBCC leaders
in from ongoing clinical trials. They hope to
-Eliot Marshall
SCIENCE
VOL. 259
29 JANUARY 1993
617
EDITORIAL
BY MORTIMER B. ZUCKERMAN
EDITOR-IN-CHIEF
BATTLING BREAST CANCER
ran Visco had two full-time jobs at the age of
cancer that year. In six weeks they collected more than
39 as a commercial trial lawyer and as a wife
600,000 letters. They organized a conference of re-
and mother. Her doctor recommended she have
nowned scientists in the field, who testified to areas of
a baseline mammogram even though there was no
research that needed more money and concluded that
family history of breast cancer. The mammogram re-
an additional $300 million could realistically be spent
vealed she had the disease. That was five years ago.
annually on breast-cancer research.
She has recovered, but she knows that she was lucky
With that, women went on the march. Busloads came
and she acknowledges it by throwing herself into a
to Capitol Hill. They set up vigil on the Senate steps.
campaign to make the survival of millions of other
Ultimately, by force of reason and pressure they induced
women more than happenstance.
the Congress, and finally the president, to approve a sum
America is undergoing a breast-cancer epidemic.
of $400 million - nearly a tripling of the previous budget.
Every three minutes, a woman is diagnosed, and every
It was the first meaningful increase in appropriations for
11 minutes, a woman dies from the
the disease. It meant that many proj-
disease. It strikes 1 in 8 women and
ects could be taken up that had been
kills 46,000 a year. Nearly every wom-
unfunded by the National Cancer In-
an (and many men, including this
'Every three
stitute because of revenue shortfalls.
writer) has personal knowledge of
minutes, a woman
No longer would women have to pay
someone with breast cancer and has
for breast-cancer research with brown-
witnessed the agonizing medical and
is diagnosed,
ie sales and chili cook-offs.
emotional struggle to cope with the
and every 11
The money will also go to improving
disease. It is the disease that women
access to high-quality breast-cancer
fear most, because it also carries with
minutes, a woman
screening, diagnosis and treatment.
it the fear of disfigurement in a soci-
dies from the
Mammography is the best way to de-
ety that places great value on physical
disease.
tect breast cancer in its early stages,
appearance. "It's like standing in the
when a tumor is small - even too small
midst of a battlefield," says one wom-
to be felt - and localized, often con-
an, "with all your friends dropping
fined to the breast or to the milk duct
around you one by one."
where it arose. It is then particularly
The perception is not fanciful.
amenable to treatment. Appropriate
There are 2.8 million victims in America at the mo-
mammography and subsequent treatment can reduce
ment. It costs the country over $6 billion annually in
the breast-cancer death rate by as much as one third. The
medical costs and lost productivity something to bear
risk in mammography is minimal; radiation doses are
in mind when the "costs" of a detection program are
low. All doctors should recommend a mammogram.
assessed. Breast cancer has become the leading cause
Until now, however, there has been another snag:
of death for women between the ages of 32 and 52.
Businesses have been slow to include insurance cover-
This need not be. Fran Visco joined the Linda
age for tests. Remarkably, it has taken a six-year battle
Creed Foundation, named after a 37-year-old song-
to get screening approved as a legitimate Medicare ex-
writer victim and dedicated to the early detection and
pense. Three quarters of the Fortune 500 companies
treatment of breast cancer. Last year, she became the
provide insurance coverage for the test, but the provi-
first elected president of the National Breast Cancer
sion should be universal.
Coalition, which is devoted to changing the rules of
The NBCC deserves credit for refusing to fight with
research and treatment. The coalition is a model of the
other medical centers for what little funds were available
American gift for association in action.
for medical research and for fighting instead for new
A national network of individual members has been
money altogether. But where would we be if Fran Visco,
formed and now runs into the thousands. In 1991 they
and women like her, had not taken up the cause? Their
set out to collect 175,000 letters representing the num-
efforts demonstrate how individual enterprise can re-
ber of women who would be diagnosed with breast
awaken a proper sense of national priority.
Copyright © 1992. DV U.S News & World Report INC.
U.S.NEWS & WORLD REPORT, NOVEMBER 23. 1992
The
National
Breast Cancer
Coalition
a grassroots advocacy effort
P.O. Box 66373
Washington, DC 20035
July, 1993
(202) 296-7477
The President
The White House
1600 Pennsylvania Avenue
Washington, DC 20500
Dear Mr. President,
Women and men across the country have come together over the past two years to
form the National Breast Cancer Coalition with one overriding goal-to eradicate the breast
cancer epidemic. Today, the Coalition has more than 185 member organizations and
thousands of individual members. We are all volunteers - this movement has grown because
of the dedication of women with breast cancer, their families and friends.
The statistics on this disease are staggering: there are 2.6 million women living in
this country today with breast cancer; this year an additional 182,000 will be diagnosed and
46,000 will die. In October of 1992 we met with Hilary Rodham Clinton in Williamsburg,
Virginia. We wanted to impress upon her the devastating reality and the epidemic
proportions of this disease that have escaped the public's awareness for too long. Women's
health, and specifically breast cancer, historically have been ignored, by the pubic, by
Congress and by past administrations.
We could no longer wait for others to become aware of our issue. Last year, the
Coalition through a tremendous grassroots effort was responsible for the first ever
meaningful increase in appropriations for breast cancer research. We accomplished this
through our grassroots network that has coordinators and members in each state and the
District of Columbia.
We cannot afford to see that money wasted. On May 2, 1993 we kicked off our
campaign to collect 2.6 million signatures to bring to you in October, asking that breast
cancer become a national health priority and that you call for a comprehensive, national
strategy to end this epidemic. Over the summer women and men across this country will
be involved in this campaign, collecting signatures at town meetings, shopping centers,
schools - wherever possible. For many of these individuals, it will be their first experience
in the political process, but they are committed to this cause not only for themselves, but
for their daughters and granddaughters.
Mr. President
Page Two (letter)
We want to present you with these signatures on Monday, October 18, 1993. We ask
that you receive us at the White House on that date and hope that you will respond
favorably to the need for a coordinated effort to end the breast cancer epidemic.
Sincerely,
Fran Visco
Fran Visco
President
National Breast Cancer Coalition
THE PROBLEM
BOARD OF DIRECTORS*
Breast cancer is the most common form of
BARBARA J. BALABAN
ADELPHI BREAST CANCER
N
SUPPORT PROGRAM
cancer in women in the United States.
KERRIE B. WILSON
AMERICAN CANCER SOCIETY
JUDITH TULLER
AMERICAN JEWISH CONGRESS
182,000 women will be diagnosed with breast
KAY DICKERSIN, PHD.
ARM-IN-ARM
cancer in 1993, and 46,000 women will die from
BELLE SHAYER
BREAST CANCER ACTION
the disease. Every twelve minutes, another
VIRGINIA M SOFFA
BREAST CANCER ACTION GROUP
C
woman dies of breast cancer.
HELENE S. ZINTAK
BREAST CANCER ADVOCACY NETWORK
The
ARLYNE DRAPER
CALIFORNIA BREAST CANCER
Breast cancer is the leading cause of cancer
ORGANIZATIONS
National
death for African-American women.
BETSY LAMBERT, Eso.
CAN ACT
JANE REESE-COULBOURNE
DC AREA CHAPTER, NBCC
Breast Cancer
Breast cancer is the leading cause of death
JUDITH HIRSHFIELD-BARTEK, RN
FAULKNER BREAST CENTRE
for women between the ages of 35 and 52.
Coalition
ELEANOR SMEAL
FUND FOR THE FEMINIST MAJORITY
Every woman is at risk. The incidence of
EVELYN REICHEL
GREATER WASHINGTON COALITION
a grassroots advocacy effort
FOR CANCER SURVIVORSHIP
breast cancer is rising every year and we do
FRANCES M. Visco, Esq.
LINDA CREED FOUNDATION
The voice of women on breast
not know why. One in eight women will
ANN MAGUIRE
MASSACHUSETTS BREAST CANCER
cancer policy and concerns
get breast cancer in her lifetime, up from
COALITION
one in twenty in 1960. If these numbers
AMY S. LANGER
NATIONAL ALLIANCE OF BREAST
CANCER ORGANIZATIONS (NABCO)
increase at the current rate, by the year
WENDY REID CRISP
NATIONAL ASSOCIATION FOR
2000, at least one in every seven women
FEMALE EXECUTIVES
can expect to get breast cancer.
SUSAN B. KAPLAN
1-IN-9
In the time it
SUE McCAIN
SHARE
takes to read
There is no known cure for breast cancer.
SUSAN R. HESTER
THE MARY-HELEN MAUTNER PROJECT
There is no known cause.
FOR LESBIANS WITH CANCER
this brochure,
KENDRA McCarthy
VIRGINIA BREAST CANCER FOUNDATION
SUSAN M. LOVE, MD
UCLA BREAST CENTER
another woman
PATRICIA A. ROBERTSON
WOMEN'S COMMUNITY CANCER PROJECT
in this country
SHARON GREEN
Y-ME NATIONAL ORGANIZATION
FOR BREAST CANCER INFORMATION
will be told she
AND SUPPORT
has breast cancer.
Organizational affiliations for
identification purposes only
T
he National Breast Cancer Coalition
THE WORK OF THE
Yes, I want to join the
is a grassroots advocacy effort created
BREAST CANCER COALITION
National Breast Cancer Coalition
to focus the nation's attention on the breast
cancer epidemic. Conceived in January 1991, the
Legislative Impact. The Coalition initiates new
I want to be part of the national action
Coalition has grown to more than 170 organiza-
laws and regulations for research budgets, quality
network determined to fight the breast
tions representing several million patients, profes-
of patient care, and regulatory policy.
cancer epidemic.
sionals, women, their families, and friends.
"[The Coalition's] advocacy is working. The war
The Coalition educates the public about
breast cancer advocacy and, through its national
against breast cancer is a war that must and will be
Here is my contribution of:
won. Your leadership and advocacy in this fight have
action network, provides ways for individuals to
$20
$25
$35
$50
become actively involved in the fight to stop the
set us on the path to victory. "-SEN. TOM HARKIN (D-IA)
$100
$500
$1,000
Other
breast cancer epidemic.
Grassroots Mobilization. Through phone and fax chains
My gift is in honor/memory of:
and computer bulletin boards, the National Breast
THE MISSION OF THE NATIONAL BREAST
Cancer Coalition has created a network of supporters
CANCER COALITION IS TO ERADICATE
who mobilize to respond quickly to breast cancer issues
Yes, I would like to be an active
that arise.
BREAST CANCER BY ADVOCATING:
participant in the Coalition's network.
"By force of reason and pressure [the Coalition] induced
research into the cause of, optimal treatments
the Congress, and finally the president to approve a sum
and cure for breast cancer through increased
of $400 million- - nearly tripling of the previous budget
NAME
funding, recruitment, and training of scientists
it was the first meaningful increase in appropriations for
and improved coordination and distribution of
[breast cancer]. U.S.NEWS & WORLD REPORT NOV. 23, 1992.
ADDRESS
research funds.
Empowering Women. Faced with the lack of progress
CITY
improved access to high-quality breast cancer
screening, diagnosis, treatment, and care for all
in finding the cause and cure, the National Breast
Cancer Coalition is asking women to get involved and
STATE
ZIP
women, particularly the underserved and
uninsured, through legislation and change in the
act to stop breast cancer now.
(
)
TELEPHONE
HOME
regulation and delivery of breast health care.
"I have managed to keep this disease at bay since 1989
(
)
and I am now energized by the work of the National
WORK
increased involvement and influence of those
Breast Cancer Coalition We must continue to bring
living with breast cancerin the areas of legisla-
(
)
these issues to legislators, health professionals, and policy
FAX
tion, regulatory process, and all aspects of clinical
makers, who have the power and responsibility to end
trial design, including access to clinical trials.
the breast cancer epidemic." -COALITION MEMBER, N.H.
PLEASE MAKE CHECKS PAYABLE TO AND MAIL TO:
Media Attention. The Coalition works closely with
The National Breast Cancer Coalition
national and local media to keep breast cancer issues
P.O. Box 66373
and concerns in front of policy makers and the public.
Washington, D.C. 20035
"Breast cancer is the nations's best kept secret."
So that NBCC may lobby aggressively on your behalf to
-OTHER VIEWS, SAN FRANCISCO CHRONICLE, SEPT. 1991
increase funding for Breast cancer research your contri-
bution is not tax deductible.
HISTORY & ACCOMPLISHMENTS
The National Breast Cancer Coalition
a grassroots advocacy effort
T
he National Breast Cancer Coalition is a grassroots advocacy effort con-
ceived in January 1991. Since that time, the Coalition has grown to more than 170 organizations, representing several
million patients, professionals, women, their families, and friends. Coalition members include cancer support,
information, and service groups, as well as women's, consumer health, and provider organizations.
In just over two years, the NBCC has had a significant impact on general awareness about the breast cancer epi-
demic, and has had a major influence on public policy. We were able to achieve this success through intensive work
and participation on the part of the NBCC Board of Directors, Task Forces, member organizations and our national
grassroots action network.
The National Breast Cancer Coalition (NBCC) is now a forceful voice, speaking for women and men across the
country, who are demanding victory in the war against breast cancer.
THE MISSION OF THE NATIONAL BREAST CANCER COALITION is to work to eradicate breast
cancer, the most common form of cancer among women in the United States, through focusing national attention on
breast cancer and by involving patients and caring others as advocates for action, advances and change. The Coalition
informs, supports, and directs patients and concerned others in knowledgeable and effective advocacy efforts.
Nationwide, women and men are influencing policy through legislative and regulatory input, promotion of media
coverage, and participation in activities such as marches and campaigns.
OUR GOALS ARE:
To promote research into the cause of, optimal treatments and cure for breast cancer through increased funding,
recruitment, and training of scientists and improved coordination and distribution of research funds.
To improve access to high-quality breast cancer screening, diagnosis, treatment, and care for all women,
particularly the underserved and uninsured, through legislation and change in the regulation and delivery of breast
health care.
To increase the involvement and influence of those living with breast cancer in the areas of legislation, regulatory
process, and all aspects of clinical trial design, including access to clinical trials.
P.O. Box 66373, Washington, D.C. 20035
202-296-7477
ACCOMPLISHMENTS
The NBCC "Do the Write Thing" letter campaign set out in October 1991 to deliver 175,000 letters to Congress
and the President - one letter for each projected breast cancer diagnosis that year. In an extraordinary demon-
stration of the grassroots power of this issue, we delivered more than 600,000 letters. This outpouring of letters
plus hard work by NBCC members resulted in an appropriation of $132 million for breast cancer research to the
NCI in fiscal 1992 - a gain of almost 50% over 1991 spending.
In February 1992, the NBCC convened Research Hearings in Washington. Fifteen of the nation's most promi-
nent scientists working in the field of breast cancer testified. As a result of the Hearings, the Coalition told
Congress that $300 million additional dollars would be needed in 1993 for breast cancer research.
During 1992's Mother's Day weekend, the NBCC coordinated 38 events in 31 states to emphasize the need for
more research dollars for breast cancer, quality assurance in mammography, and a national registry system.
In July 1992, the NIH reauthorization bill that included the NBCC's figure of $300 million for breast cancer
passed the House and Senate, only to be vetoed by President Bush.
Led by the NBCC, women arrived in Washington by the busload and swamped their members of Congress with
calls, faxes, telegrams through the NBCC hotline and constituent visits demanding $300 million more for breast
cancer research.
The National Breast Cancer Coalition's demands were met. We won more than $400 million for breast cancer
research: $210 million in the Department of the Army and $200 million to the National Cancer Institute. This
total appropriation comprises the first-ever significant increase in breast cancer research funding.
We endorsed or supported the Mammography Quality Standards Act of 1992, a Sense of the Senate Resolution
Declaring Breast Cancer a Public Health Emergency, the Cancer Registries Act of 1992, and the Breast and
Cervical Mortality Prevention Act of 1990.
The Coalition increased the visibility of breast cancer as a national health emergency. NBCC leaders met with
Hillary Clinton during the presidential campaign to brief her on breast cancer issues. We appeared on "The
Today Show," CNN's "Sonya Live" and the "ABC Nightly News," and were covered by "U.S. News and World
Report" and dozens of national and local publications.
On May 2-4 The National Breast Cancer Coalition kicked off its 1993 Campaign to secure 2.6 million letters,
postcards, signatures, faxes and mailgrams directed to President Clinton asking that the breast cancer epidemic
be declared a National Health Emergency and that we develop a National Strategy to end the epidemic.
WOMEN'S HEALTH
Women are increasingly the victims of life-threatening illness, yet
still are at the bottom of our medical research agenda. Funding for
research into breast and ovarian cancers, osteoporosis and other
diseases remains inadequate. Although women are more likely to use
health care than men, they are less likely to have insurance:
Women make up a larger portion of the population holding part-time
jobs and clerical or sales jobs--jobs which usually don't offer health
insurance to employees.
Women tend to live longer and require more long-term and home health
services that are often not available or affordable.
Many women must rely on their spouses for health insurance, and risk
of being dropped if they divorce or if they are widowed.
From the beginning of the health reform process, women's health and
preventive care concerns were at the core of the program. The Health
Security plan will emphasize the kinds of care and research that protect
women's health and guarantee comprehensive care.
Comprehensive Benefits
Under the Health Security plan, all women will be guaranteed
coverage regardless of health status, marital status, employment
status, or ability to pay.
Women will be guaranteed a comprehensive package of benefits that
will include unprecedented free coverage of a wide range of preventive
services, including mammograms, Pap smears, diagnostic services, and
prenatal care.
The plan includes coverage for health services that help prevent
unwanted pregnancies.
Preventive Health
The Health Security plan will cover a schedule of preventive
screenings, tests, and checkups covered in only a few of today's health
insurance policies. These include regular mammograms for women
Women's Health
Page 2
with a close family history of breast cancer and will be covered under
the regular cost sharing provisions, like other medical procedures.
The nationally guaranteed comprehensive benefits package will also
include free coverage for mammograms every two years for women
over age 50 free-of-charge--no matter which plan someone chooses, as
an extra incentive for those most at risk.
Preventive services included in the comprehensive benefits package
are provided at ages specified by the report of the U.S. Preventative
Services Task Force. These recommendations can be modified by the
National Health Board as new information becomes available.
Supports Women's Health Research
New research initiatives will concentrate on child health (including
birth defects, prenatal care, and adolescent health), and illnesses that
primarily strike women -- including breast cancer, ovarian cancer, and
osteoporosis.
Medical research initiatives will be expanded to include efforts to
isolate and cure diseases such as breast cancer and cervical cancer.
Expansion of Home and Community-Based Long-Term Care Services
The addition of a new home and community-based long-term care
program and the expansion of nursing home coverage will help reduce
the undue burden born by many women caregivers.
October 8, 1993
SENT NIH/NCI
; 7-27-93 ;
9:59 : ADMIN. SERV. SECT.
92024566244 2/ &
THE PRESIDENT'S CANCER PANEL
SPECIAL COMMISSION ON BREAST CANCER
Chaiman
MANCY
July 23, 1993
Summ G. Kanna
Donstr Fundation
Medium
The Honorable Hillary Rodham Clinton
DORIT D. ADLER, M.D., M.P.E
University d Michigan Medical
The White House
nume
Washington, D.C. 20500
KAREN IL ANTMAN. M.D.
Columbia University College of
Physicians and Surgeous
ZORA K. BROWN
Dear Mrs. Clinton:
Cancer Programs
Services (CAP)
I am writing at the suggestion of Roed Tuckson, M.D., who serves as a
PILAYO CORREA, M.D.
Louisians State University
member of the President's Cancer Panel Special Commission on Breast
Checken
Cancer (SCBC), a federally chartered committee which I chair.
OFRALD D. DODD, M.D.
M.D. Customer Common
This 19 member Commission is composed of national experts in all aspects
KAKEN HARRY DOW, R.M. PLD.
Bods hast Norphal, Constridge
of brcast cancer research and care and includes three patient advocates. It
HARMON 1. BYRE, M.D.
has held 11 meetings throughout the nation, beginning in May 1992, at
American Camper Stocarty
which it received testimony on every aspect of the breast cancer problem
SAY R LIARRE. M.D.
from over 190 scientists. clinicians, breast cancer survivors, and
Harvant Medical School
representatives of relevant government agencies, private sector organiza-
KATHEYN B. BORWITZ. M.D.
- & Colorado
tions and businesses.
16 Customer
BARBARA a. HULKA, M.D., M.P.B.
We are well aware and quite respectful of your interest in health care
University of North Carolles
reform generally, and breast cancer prevention and treatment specifically.
MARY-CLAIRE KING, Ph.D.
University of California,
All of us were quite moved by your recent speech in Los Angeles on
School of No. Health
behalf of the Iris Cantor Center for Breast Imaging. Your anecdotes
SHERRY L. LANSDIG
revealed the depth of your personal compassion for the millions of our
Passenoment Medam Plature Group
countrywomen who live with this challenge every day.
SAM SHAPIRO
The Johns Repline University
School of llygiams a Public Health
Our Commission is completing its final report of findings and recommen-
a FIVA SINCERETABY, M.D.
dations. It is being put together very thoughtfully and with outstanding
M.D. Anternon Canser Conter
expertise. We would very much like to provide you with the opportunity
a MARIE SWANSON, M.D. M.P.M.
Michigan Stone University
to review our report and to use both its release and its substance as part of
RHED V. TUCKSON, M.D.
your health reform campaign. We know that the events surrounding the
Charles a. Dept University of
publication of this document will be of high national interest, particularly
Medician and Scheme
in the breast cancer research and advocacy communities. To the greatest
FRANCES M. VISCO
National Brant Custor Condition
extent possible, we would like you to have the benefit of our efforts.
WALTER C. WILLETT. M.D., Dr. P.H.
Harved School of Public Health
Additionally, I am aware that many members of the Senate have asked the
Burnet
President to convene selected leaders from government, the scientific
Lale 1. Schmolder
Assistant as Program
community, private industry and women with breast cancer to develop and
Operations and Planning
National Custor birthers
carry out a national strategy to end this disease. Our Commission is a
- " Ram 4AM
superb group and I am convinced that no more impressive body of experts
- MD 20092
was 301-496-1148
could be assembled than those from whom we received testimony. The
) 201-402-1308
NIH/NCI
; 7-27-93 : 10:00 : ADMIN. SERV. SECT. of
92024566244 3/ 4
record of our hearings and the report of findings and recommendations developed by the
SCBC based on all this testimony represent a significant investment of time, money and
expertise. It is my personal goal to have the report ready by the end of October, which is
National Breast Cancer Awareness Month. I hope decisions about future directions and
initiatives would not be made until the Administration has had the opportunity to review it
and take advantage of all the consultation and hard work that have gone on for over a year.
Given the urgency of time, I and Dr. Tuckson, perhaps along with & few others, would
appreciate the opportunity to brief you or your designee about this report and to discuss the
next steps. I can be reached at 214/380-9633 or your staff can contact Iris Schneider, the
Executive Secretary of the SCBC at the National Cancer Institute at 301/496-5534 look
forward to hearing from you soon.
Please accept my deep appreciation for your concern for the health of the Nation and for your
interest. in particular, in preventing death and suffering from breast cancer.
Nancy Sincerely, Brinder
Nancy/G. Brinker
Chairman
President's Cancer Panel Special
Commission on Breast Cancer
cc:
Dr. Tuckson
The
National
Breast Cancer
Coalition
a grassroots advocacy effort
P.O. Box 66373
Washington, DC 20035
(202) 296-7477
WHY WE NEED A COMPREHENSIVE NATIONAL STRATEGY
The breast cancer epidemic has been called this nation's best kept secret. There
are 2.6 million women in America today with breast cancer, one million of whom do not
yet know they have the disease. This year 182,000 more women will be diagnosed and
46,000 women will die.
Without a comprehensive strategic plan to end this epidemic, the loss of human
and financial resources to this nation, already of staggering proportions, will continue to
escalate.
The Problem?
That we do not know what causes breast cancer, how to prevent it or cure it.
That the incidence of breast cancer has been rising since the 1940's and we don't know
why.
That the researchers, the medical community, the government and the
women with breast cancer do not work together, do not communicate in the search for
answers.
That 80% of women who are diagnosed with breast cancer fall into no known
high risk category. That a significant portion of educational materials on breast cancer
are outdated, plainly wrong or duplicative.
That so little is known about the suspected environmental factors in the
development of breast cancer.
That there has been little progress in methods of detection and treatment
over the past twenty years. That too few women have access to high quality care.
That historically breast cancer has been underfunded and we need to find
ways to bring medical professionals and scientists into the field. That we know little
about the healthy breast, and fail to educate women, especially young women, in what
breast health we do know.
That breast cancer affects the entire family and too little is done to help
those affected by the disease and that fear and cultural mores result in treatment denial
or detection that is too late.
That far too many women die.
Our human resources are too important,
our economic resources too limited, to waste.
We can no longer afford to battle this disease in isolation, not on any level.
The National Breast Cancer Coalition calls for a comprehensive national plan that will:
Involve all segments of the Administrative branch, from the Environmental
Protection Agency, Department of Commerce, Center for Disease Control,
National Institutes of Health, National Cancer Institute, to the Department of
Defense and the Department of Education.
Involve leadership from Congress, the scientific community and the private
sector.
Foster communication and coordination of effort among scientists and
medical professionals.
Expedite the approval process for drugs and devices used in the treatment of
breast cancer.
Search for the possible environmental causes of breast cancer.
Insure that women of all ages are educated about the importance of breast
health.
Provide incentives to attract more scientists to the field of breast cancer
research.
Remove existing roadblocks to innovative research.
Develop strategies to provide incentives for the private sector to invest in
research.
Insure that the best available information regarding breast cancer is available
to medical professionals and the public at large.
Insure that all women have access to state of the art screening and treatment.
Find the tools we need, but do not yet have, in the war against this disease.
Our goal is simple: The eradication of breast cancer.
We believe the goal can be achieved. We cannot do it alone. It will take the
commitment of the Clinton Administration and the nation. Join the 1993 National
Breast Cancer Coalition Campaign.
The
National
PLEASE NOTE
OUR NEW ADDRESS
Breast Cancer
P.O. Box 66373
Coalition
Washington. D.C. 20035
a grassroots advocacy effort
(202) 296-7477
Summary of Position on Breast Cancer
for the 103rd Congress
Submitted By
The National Breast Cancer Coalition
Breast cancer is an epidemic that has been called this nation's best kept secret.
Today, there are 2.6 million women living with breast cancer - 1.6 million who have been
diagnosed and an estimated 1 million women who do not yet know they have this
disease. This year alone, 182,000 women will be diagnosed with and 46,000 will die of
breast cancer. It is the number one killer of women ages 32 to 54. Every three minutes,
a woman is diagnosed with breast cancer. Every twelve minutes, a woman dies. Over
120 times a day, someone's wife, someone's mother, someone's best friend dies from this
savage disease.
We do not know what causes breast cancer or how to cure it. Breast cancer is a
disease with a legacy - a woman who is diagnosed with breast cancer knows that it is
likely that her daughters and granddaughters will hear the same diagnosis some day. Yet
the vast majority of women who have breast cancer have no family history of the disease.
Eighty percent of women who are diagnosed with the disease fall into no known high
risk category.
The National Breast Cancer Coalition is a grassroots advocacy effort committed
to the eradication of the breast cancer epidemic. We know that we can achieve that
goal. We recognize, however, that to do so we must effect fundamental change in all
aspects of the fight against this disease. We must not be bound by the status quo, rather
we need new ideas and new approaches to address the breast cancer epidemic.
The NBCC asks that this Congress recognize the epidemic of breast cancer and
join in our commitment to eradicate the disease. Specifically we ask that Congress:
Commit to ending the epidemic of breast cancer and to a national plan to
combat this disease. Work with the Clinton administration to call together leaders from
the Executive branch, the Congress, the scientific community and women with breast
cancer and other breast cancer advocates to begin the design and implementation of this
plan.
Enact legislation that will ensure sustained increased levels of funding for breast
cancer research.
Approve a supplemental 1993 appropriation to implement the Cancer Registries
Amendment Act and legislation to appropriate a sufficient level of funding in 1994.
Amend the Mammography Quality Standards Act to strengthen its provisions
and approve a supplemental appropriation to support its implementation.
Mandate a study to determine the feasibility of and to recommend the
parameters of a national tissue, tumor and devices bank or banks.
Ask that the General Accounting Office investigate the structure and process of
the National Institutes of Health and recommend changes to facilitate innovative ideas
and the entry of new scientists into breast cancer research.
Devise legislative recruitment and retention strategies that will attract and keep
high quality scientists in the field of breast cancer and to support those scientists,
entrenched and renowned in other fields, who wish to move to breast cancer research.
Enact legislation that will provide incentives to the private sector to foster
quality private research into breast cancer prevention, detection and treatment.
Determine and then legislate an appropriate method to oversee and coordinate
all federal breast cancer activities including agencies, projects and initiatives. It is vitally
important that there be a mechanism through which the exchange of information and
data can be accomplished by medical professionals and the lay public.
Enact health care reform that results in access for all women to appropriate
methods of detection and treatment. A woman's survival should not depend upon her
economic circumstance. All federally funded education and screening programs must
include access to treatment.
Enact legislation to ensure that access to care will not be denied because of a
woman's prior medical history.
The National Breast Cancer Coalition's complete position paper, addressed to
President Clinton, follows.
must decide based on their training and experience what is
Chicago and other institutions providing us with these
truly known about an agent, which conclusions are too early
reports in the years to come.
to make, and, therefore, what data should be made available
to a patient. Emerging data are seductive but often subject to
various interpretations, as anyone who has attended a
References
National Cancer Institute phase I meeting can readily attest.
(1) Ratain MJ. Mick R. Schilsky RL. et al: Statistical and ethical issues in
The current phase I and phase II trial designs are products
the design and conduct of phase I and II clinical trials of new
of evolution and are widely employed not for their statistical
anticancer agents. J Natl Cancer Inst 85:1637-1643. 1993
rigor, but because they provide data upon which decisions
(2) Collins JM. Grieshaber CK, Chabner BA: Pharmacologically guided
phase I clinical trials based upon preclinical drug development. J Natl
for future studies can be based. The designs also strike a
Cancer Inst 82:1321-1326. 1990
balance between knowing exactly and unnecessarily treating
(3) Penta JS. Rosner GL, Trump DL: Choice of starting dose and
patients with subtherapeutic doses or inactive drugs. The
escalation for phase I studies of antitumor agents. Cancer Chemother
Pharmacol 31:247-250. 1992
currently used trial designs are not perfect, and proposals to
(4) Ratain MJ. Berezin F, Allen SL, et al: Population pharmacodynamic
modify them usually attempt to either improve patient safety
(PD) study of amonafide (BIDA): CALGB 8862. Proc ASCO
11:A290, 1992
or increase the likelihood of response. However, these two
(5) Ratain MJ. Mick R, Berezin F, et al: Phase I study of amonafide
elements frequently conflict with one another when a cancer
dosing based on acetylator phenotype. Cancer Res 53(10 Suppl):2304-
patient is treated with cytotoxic chemotherapy. Many of the
2308. 1993
proposed modifications to the current phase I and phase II
trial designs will shift the balance of these two factors.
Notes
While a discussion of such proposals may be useful, the
feasibility of any new trial design must ultimately be
Correspondence to: Michael J. Hawkins, M.D., Departments of Medicine
and Pharmacology, Georgetown University Medical Center. Lombardi
demonstrated by the successful conduct of the clinical study.
Cancer Research Center, 3800 Reservoir Rd., Washington, DC 20007.
We can look forward to the investigators at the University of
Manuscript received September 13, 1993; accepted September 14. 1993.
ACS encouraged mammography for women under 50.
In 1988, led by the American College of Radiology, most
Screening for Breast Cancer:
organizations involved with cancer treatment agreed to a
more stringent recommendation, which stated that beginning
What Should National Health
at age 40, annual or biannual mammography should be
performed in addition to a yearly clinical examination. In
Policy Be?
1991, the ACS reiterated its support of radiological
screening in women under 50.
The landmark Health Insurance Plan (HIP) of New York
study that began 30 years ago was the first of eight long-
Thomas C. Chalmers*
term clinical trials in which women were selected at random
or randomly assigned either to a group receiving mammogra-
phy or to a control group with no mammography. Results of
that trial and those from the other six studies, which have
For decades, it has been assumed that the lives of women
been published during the last 8 years, have been combined
with breast cancer could be prolonged if their tumors could
in a meta-analysis by Elwood et al. (3) presented at an
be diagnosed early, before metastasis to other parts of the
international workshop on screening for breast cancer
body. The addition of effective technology, in the form of
summarized in this issue of the Journal (4). A representative
radiological mammography, to supplement routine physical
of each trial was present and participated in the
examinations and breast self-examination has been viewed as
deliberations.
an inherently attractive program, and mammography has
The charge to the workshop was not to make recommen-
become widely used in the last 20 years.
dations regarding mammography, but to seek a consensus on
By 1977. there was general agreement that women older
the data from the eight studies for the benefit of an advisory
than age 50 should have an annual breast physical
committee of the NCI, which would, in turn, make
examination and mammography. This consensus was cod-
recommendations. The report from the workshop summarizes
ified by the National Cancer Institute (NCI) and the
data on women aged 40-49 in the trials as follows: "The
American Cancer Society (ACS) (1). However, there were
randomized trials of women ages 40 to 49 are consistent in
serious doubts about the wisdom of encouraging annual
mammograms for women younger than 50. Was the apparent
lengthening of life merely a shortening of the prediagnosis
lead time? Could the exposures to X rays at a younger age
be harmful (2)? In 1980, undaunted by these worries, the
*See "Notes" section following "References."
Journal of the National Cancer Institute, Vol. 85, No. 20. October 20. 1993
EDITORIALS 1619
showing no statistically significant benefit in mortality after
an annual examination rather than a specific effect of
10 to 12 years of follow-up
In contrast, results for
mammography.
women ages 50 to 69 in all randomized trials confirmed the
So the pooled results of the definitive trials on
disease postponement benefit that was first seen in the HIP
mammography in women aged 40-49 are unimpressive for
trial." All representatives agreed that more randomized
mortality efficacy, as pointed out in the accompanying
control trial data are needed for women who might have
article by Fletcher et al. (4). It is important to emphasize
their first mammography after the age of 69.
that we are discussing routine preventive measures for breast
Thus, mammography recommendations with regard to
cancer in the general population, not for patients at high
women under the age of 50 seem to have come full circle.
risk, such as those with a strong family history.
However, it is important to point out that there is as yet no
What should those individuals responsible for public
basis for denying potential efficacy in younger women.
health policy now recommend? I believe that after
Except for the hard-to-explain shortening of time between
wallowing in the data for almost a year, I can answer that
random assignment and death from breast cancer found in
question with respectable credibility.
the Canadian trial, harm has neither been suggested nor
I propose two measures: First, because of the annoying
proven by the randomized control trial data presented at the
uncertainty regarding the benefit of mammography for.
workshop. Although mammography's combined effect on
women aged 40-49, another study that corrects a major
mortality from breast cancer in women 40-49 years of age is
defect in all the studies reported to date should be conducted
very close to zero, the 95% confidence interval includes a
immediately. This defect is the relative crudeness and
potentially beneficial lengthening as well as harmful
insensitivity of determining effects by decade rather than
shortening of the time until death from breast cancer of
individual years of age at the time of randomization. We can
approximately 30%.
remedy this problem by obtaining from all of the in-
This analysis by workshop participants is a good example
vestigators all of the individual patient data on age and
of how hard it is to prove a negative hypothesis in clinical
menopausal status at the time of randomization and timing
medicine. The statistical power needed to accomplish that
of all events and compliance after randomization. Meno-
task depends both on the total numbers of study subjects and
pausal status is especially important because many bits of
on the quality of the studies. Although almost half a million
data suggest that cancer of the breast acts differently before
young women have been randomly assigned in the eight
and after menopause. Perhaps menopausal status is the
studies, the number that have had follow-up for 10 years or
critical cutoff point rather than the age of 50.
more is still relatively small, and several studies have found
The NCI should see that such a "mega-analysis" is
a delay of 8-12 years in the possible effect on mortality.
undertaken. A precedent has been set by the National Heart,
The quality and applicability of the studies have been
Lung, and Blood Institute. Individual data on all patients
vigorously challenged by radiologists, but they are not an
randomly assigned to coronary artery bypass surgery in
unbiased group (5). Even so, I believe that there are
seven trials started over 10 years ago are about to be
numerous ways in which flaws in the studies could have
published.
resulted in a spurious answer. Randomization was sometimes
If such a study does not yield a satisfactory conclusion in
by clusters of patients rather than by individuals. The
6-12 months and if the data from other trials now under way
technique of mammography was not always what is now
do not suggest a clear answer to the question, a large-scale
considered optimal. The effects of crossovers were not
international trial designed to avoid all past mistakes should
adequately measured (they rarely are). The best of the
be undertaken. This trial would, I hope, be sized to sup-
studies in women aged 40-49 (6) is one of two recently
plement the available information rather than test the null
reported trials comprising the Canadian National Breast
hypothesis as if no prior information existed.
Screening Study (NBSS). This trial was different from most
My second proposal concerns third party reimbursement
of the others in that the effect of annual mammography and
for mammography in women under the age of 50-or in
physical examination was compared with that of a single
premenopausal women, if menopause proves to be the
physical examination plus yearly follow-up with a self-
critical cutoff point. I recommend that third parties pay for
administered questionnaire. Over 50000 women were ran-
mammography in these women only if the women are
domly assigned. The risk of death from breast cancer was
randomly assigned in a peer-reviewed study. The point here
higher in the mammography group (odds ratio = 1.36; 95%
is that it is foolish for some third parties to continue to pay
confidence interval = 0.84-2.21)-approximately 35%
for mammography in younger women as if it has been
higher. Even if some beneficial effect begins to appear in the
proven to be effective and for other third parties not to pay
next 5-10 years for women aged 40-49 at the start of the
for mammography as if it has been proven ineffective. A
study, it is extremely unlikely that the observed trend will be
board of experts could authorize exceptions such as
completely reversed. For the second NBSS trial, involving
geographic inaccessibility or other contraindications.
women aged 50-59 (7), annual mammography combined
A policy of supporting needed clinical trials and not
with breast physical examination had produced no effect
paying for unproven diagnostic and therapeutic interventions
after 7 years compared with physical examination alone.
should be a cornerstone of any health care reform, because
Considering the NBSS trials, the apparent trend toward a
such a policy will improve quality while at the same time
good effect of mammography in the past studies in women
saving money. Mammography for younger women would be
of all ages could be attributed to awareness stemming from
a great place to start.
1620 EDITORIALS
Journal of the National Cancer Institute, Vol. 85, No. 20. October 20, 1993
References
(6) Miller AB, Baines CJ, To T, et al: Canadian National Breast Screening
Study: I. Breast cancer detection and death rates among women aged
(1) National Cancer Institute: Consensus Development Meeting on Breast
40 to 49 years [published erratum appears in Can Med Assoc J
Cancer Screening. US Department of Health, Education and Welfare,
148:718, 1993]. Can Med Assoc J 147:1459-1476. 1992
Public Health Service, National Cancer Institute. DHEW Publ No.
(7) Miller AB, Baines CJ. To T. et al: Canadian National Breast Screening
(NIH)78-1257, September, 1977
Study: 2. Breast cancer detection and death rates among women aged
(2) Bailar JC 3d, Smith EM: Progress against cancer? N Engl J Med
50 to 59 years [published erratum appears in Can Med Assoc J
314:1226-1232. 1986
148:718. 1993). Can Med Assoc J 147:1477-1488, 1992
(3) Elwood JM, Cox B, Richardson AK: The effectiveness of breast cancer
screening by mammography in younger women. Online J Curr Clin
Trials (serial online), Feb 25 (Doc No 32). 1993
(4) Fletcher SW, Black W, Harris R, et al: Report of the International
Notes
Workshop on Screening for Breast Cancer. J Natl Cancer Inst 85:1644-
1656, 1993
Correspondence to: Thomas C. Chalmers, M.D., Medical Research
(5) Chalmers TC: Editorial: mammography after 30 years. Online J Curr
Consulting, 32 Pinewood Village, West Lebanon. NH 03784.
Clin Trials May 28, (Doc No 66), 1993
Manuscript received September 17, 1993; accepted September 17. 1993.
statistical validity and clinical applicability. In this editorial,
we present a much more critical analysis of available
Deficiencies in the Analysis
screening data and also provide what we believe to be a
more balanced overview of current knowledge on the
of Breast Cancer
strengths and limitations of screening. Paralleling the article
by Fletcher et al. (1), we concentrate on the evidence from
Screening Data
randomized controlled trials of breast cancer screening in
women aged 40-49. The major problems concerning the
randomized controlled trial data for this age group include
lack of statistical power, other flaws in experimental design,
Edward A. Sickles, Daniel B. Kopans*
and technical deficiencies in implementation of study
protocols. Some specific problems are common to all
randomized controlled trials, others to individual randomized
controlled trials.
Breast cancer is a major, and increasing, public health
problem in the United States and most other industrialized
Statistical Power
countries. Since there is not yet an established means of
A randomized controlled trial of breast cancer screening
preventing breast cancer, efforts to combat the disease have
must involve sufficient numbers of women who develop
focused on early detection through screening to increase the
sufficient numbers of breast cancers resulting in sufficient
success of existing treatment. There is general consensus that
numbers of breast cancer deaths, such that a reduction in the
screening is both safe and effective in women aged 50 and
number of deaths by screening can be demonstrated with
older, but considerable controversy remains over the utility
statistical validity. In designing a trial, planners make a
of screening women aged 40-49.
calculation of statistical power that estimates how large the
The report by Fletcher et al. published in this issue of the
study and control populations should be to demonstrate the
Journal (1) is a summary of a breast cancer screening
anticipated benefit. The smaller the expected benefit, the
workshop convened by the Early Detection Branch of the
larger the number of women needed in the trial; conversely,
National Cancer Institute in February 1993. The vast
if the number of women in the trial is small, only a very
majority of data presented at the workshop involved only the
large benefit can be demonstrated. If the number of women
eight randomized controlled trials of breast cancer screening,
is too small to begin with, or if dilution effects from
despite the availability of an abundance of additional
noncompliance (refusal of screening) or control group bias
evidence. The article by Fletcher et al. (1) reflects this bias
(screening in control group) are not accounted for by
by discounting the importance of nonrandomized controlled
increasing the number of women studied, then the ability of
trial data. Screening data from the eight randomized
the trial to demonstrate a benefit is compromised (2).
controlled trials are discussed for women aged 40 and older,
With the exception of the National Breast Screening Study
with special focus on women in the specific age group
of Canada (NBSS) (3,4), for which only preliminary data are
40-49, the period during which screening is most
available, the randomized controlled trials were designed to
controversial.
evaluate screening in women aged 40 and older as a single
Fletcher et al. briefly cite many of the problems that have
been raised concerning the validity and applicability of the
screening data presented at the workshop. However, the
reader is left with the implication that these problems are
relatively unimportant, when in fact they severely limit both
*See "Notes" section following "References."
Journal of the National Cancer Institute, Vol. 85, No. 20. October 20, 1993
EDITORIALS 1621
NCI Proposes New
plained Edward Sondik, Ph.D., deputy
director of NCI's Division of Cancer
Breast Cancer
Prevention and Control. "But the data
don't determine exactly which interval
Screening Guidelines
is best. We're proposing to change the
guidelines to reflect the information we
In a much anticipated move, the Na-
have."
tional Cancer Institute announced its
Medicare, the government-funded
intention to revise guidelines for breast
insurance for older people, currently reim-
had been recommending mammogra-
cancer screening.
burses for screening mammograms every
phy every 1 to 2 years for this age group.
Institute officials presented the sug-
other year in asymptomatic women.
Peter Greenwald, M.D., Dr.P.H.,
gested revisions last month to a sub-
NCI's proposed changes are based
director of NCI's Division of Cancer
committee of the National Cancer
on the summary of the International
Prevention and Control, explained that
Advisory Board. During October and
Workshop on Screening of Breast Can-
"for women age 40 to 49, there is uncer-
November, NCI planned to circulate
cer, held in Bethesda, Md., last February
tainty about the effectiveness of screen-
the draft guidelines to various public
(see News, March 17, 1993) . Workshop
ing mammography for women who
and private agencies for review and
participants reviewed the results of 30
have no symptoms." After years of re-
comment, with a target date of early
years of screening trials and a panel
search that does not show a benefit,
December for a final decision.
wrote a summary statement, which
NCI could not continue recommending
The most contested part of the
appears in this issue (see page 1644).
that all healthy women without symp-
proposed changes centered around
The workshop panel determined that
toms receive mammograms between
recommendations for women ages 40 to
for women age 40 to 49, "it is clear that
the ages of 40 and 49, he said.
49. NCI's proposed guidelines state
in the first 5 to 7 years [after screening]
that women ages 40 to 49 should talk to
there is no reduction in mortality from
1 to 2 Years
a health professional about the advisa-
breast cancer that can be attributed to
bility of screening with mammography,
screening. There is an uncertain, and, if
In the proposed guidelines, NCI also
taking into account family history of
present, marginal reduction in mortality
recommended that asymptomatic
breast cancer and other risk factors. NCI
at about 10 to 12 years."
women age 50 and older be screened
every 1 to 2 years with mammography
and receive an annual clinical breast
examination. NCI had been recom-
mending annual mammography.
Because studies have shown screen-
ing with mammography at intervals
from 12 to 33 months to be effective,
NCI opened the interval from yearly to
every 1 to 2 years. The proposed guide-
lines continue to include annual clinical
breast examination for women ages 40
and older, and monthly breast self-
examination for all women as prudent
practices.
"Our best evidence for women age 50
and older is that screening with mammog-
raphy at regular intervals is effective in
Dr. Peter Greenwald
reducing breast cancer mortality," ex-
Dr. Thomas C. Chalmers
1626 NEWS
Journal of the National Cancer Institute, Vol. 85. No. 20, October 20, 1993
ews
News
The panel also found that more than
in response to NCI's proposed
als show clear benefits for screening
30 years of controlled, randomized trials
changes."
women age 50 and older, but less clear
have strengthened the conclusion that
Eyre said that ACS agrees with the
or no real benefit for younger women.
women age 50 to 69 benefit greatly from
findings of the International Workshop,
Studies have not clarified this issue,
regular mammograms. "Current scientific
but disagrees on the recommendations
and experts have not reached a consen-
evidence strongly reinforces the value of
to make from these data. "We will con-
sus on the effectiveness of mam-
screening mammography for women age
tinue to monitor the situation," he said,
mographic screening of asymptomatic
50 and older," said Greenwald. About
"and we recognize the continuing contro-
women in this age group.
three-quarters of all breast cancers are
versy over the lack of perceived benefit
Edward A. Sickles, M.D., of the
found in women over age 50.
of mammography for women 40 to 49,"
University of California, San Francisco,
For women age 70 and older, the In-
noting that ACS has long recommended
and Daniel B. Kopans, M.D., of Har-
ternational Workshop panel said data
that women discuss the need for mam-
vard Medical School, Boston, register
were "inadequate to judge the effective-
mography with their physicians.
their critical comments on the work-
ness of screening," and due to the in-
The first major breast cancer screen-
shop report, mainly about the con-
creased risk of breast cancer in this age
ing trials to include women age 40
clusions for woman 40 to 49, in an
group, randomized trials would probab-
through 49 were not planned to enable
editorial in this issue (see page 1621).
ly not be feasible.
a separate analysis of results in this age
"The Fletcher Report involves a
NCI does not propose to have an upper
group. Evaluation of data from these tri-
one-sided analysis of the facts, ignoring
age limit at which to stop screening.
"Older women should make screening
decisions jointly with their physicians,"
said Sondik, "and the decision should
NCI's Proposed Breast Cancer
reflect a consideration of other health-
related issues."
Screening Guidelines
Gathering Comments
The following is a brief version of the National Cancer Institute's proposed
guidelines for breast cancer screening and a summary of the proposal process.
NCI will be gathering commentary
Ages 50 and older: NCI recommends women be screened every 1 to 2 years with
on the proposed changes from various
mammography and receive an annual clinical breast examination. Women ages 70
organizations, including the 11 agen-
and above should be screened unless otherwise indicated by health status.
cies that had been in agreement on the
Ages 40 to 49: NCI recommends women discuss with a health professional the ad-
current screening guidelines. At least
visability of breast cancer screening with mammography, taking into account family
two of these organizations - the Amer-
history of breast cancer and other risk factors. NCI also recommends annual clinical
ican Cancer Society and the American
breast examination as a prudent practice for this group.
College of Radiology - are expected
Breast self-examination: NCI recommends as prudent practice monthly breast
to register some level of dissent with
self-examination for all women, along with consultation with a health professional
the proposed changes.
on proper breast self-examination techniques.
"We would like to see the NCI and
The full text of the proposed guidelines and a copy of the report on the Interna-
ACS guidelines as close as possible,
tional Workshop on Breast Cancer Screening were disseminated to the 11 agencies
so as to not send a mixed message to
involved in the first set of guidelines and to professional, voluntary and advocacy
the public," explained Harmon Eyre,
groups.
M.D., deputy executive vice presi-
These groups will comment on the draft guidelines at the Oct. 21 meeting of the
dent for Medical Affairs and Research
Board of Scientific Counselors for the NCI's Division of Cancer Prevention and Con-
at ACS, the largest non-profit ad-
trol. The draft guidelines will also be reported to the National Cancer Advisory Board
vocacy group focused on cancer is-
in November. A final decision by the NCI Executive Committee is slated for December.
sues. He added that "ACS has taken
no action in changing its guidelines
- Kara Smigel
Journal of the National Cancer Institute. Vol. 85. No. 20. October 20. 1993
NEWS
1627
TO:
Bill Grigg, Director, News Division
Office of the Assistant Secretary for Health
THROUGH: Anne Thomas, Acting Associate Director for Communications, NIH
NCI is planning to hold a press conference to announce the results of the work of the
President's Cancer Panel Special Commission on Breast Cancer. The Commission met 11
times between May 1992 and July 1993 and heard testimony from 190 individuals: scien-
lists, clinicians, patient advocates, third party payers, relevant DHHS components, biotech-
nology and pharmaceutical companies, the news media, scientific, professional and voluntary
organizations and others.
Pursuant to Executive Order 12838, the Commission went out of existence on September 30,
1993. Their completed report will be published by NCI.
At the press conference, Mrs. Nancy Brinker, the Commission chair and a former member
of the President's Cancer Panel, would like to present the Commission's findings to the
Government during a press conference in Washington, D. C.
Featured speakers representing the Commission at the press conference would be Mrs.
Brinker and Dr. Harold Freeman, the current chair of the President's Cancer Panel. The
Commission would like to present their report to Secretary Shalala or another top figure in
the Clinton Administration, who could use the occasion to announce the new HHS Breast
Cancer Action Plan initiative. The Secretary will chair a special meeting December 14 at
NIH. This meeting is a springboard for coordinating Federal activities to Implement the
Commission's recommendations.
Possible dates for a press conference would depend on the Secretary's schedule, but it is
hoped that it can be held in October, which is National Breast Cancer Awareness Month.
Mrs. Brinker is not ablc to bc in Washington October 13. 14, 19. 21 or 22. We are
tentatively planning to hold the press conference in the HHS auditorium.
Please let me know if you have any questions. I look forward to hearing from you and
working with you.
Eleanor Nealar
Eleanor Nealon
The
aumy
funded care is critical for access to care. Exclusion of preexisting conditions leaves
women previously diagnosed with breast cancer without coverage in the event of a
recurrence. Women who have been diagnosed with breast cancer cannot change jobs
because future treatment for breast cancer would be excluded from coverage. Women
with no coverage or inadequate insurance often experience delays in diagnosis and
treatment.
Affordability of care and of health insurance is an important issue. In small companies,
breast cancer patients may be discriminated against and feel guilty if the costs of their
care lead to a large insurance premium increase for their co-workers. Increased
premiums and patients' out-of-pocket costs for breast cancer care can affect family
resources and cause the breast cancer survivor to feel guilty.
There is a very specific problem with regard to reimbursement for mammography. While
the current recommended guidelines of the National Cancer Institute, the American
Cancer Society, and other professional organizations recommend annual mammograms
for women 50 and older, Medicare provides reimbursement every other year for women
65 and older and does not provide any coverage for breast clinical examination.
RECOMMENDATIONS
National Legislation
New funds should be appropriated to support the President's Cancer Panel Special
Commission on Breast Cancer's recommended program at a level no less than $500
million per year until breast cancer prevention and cure are achieved. This research
effort should be under the leadership of the National Cancer Institute.
State Legislation
Support state legislation to provide quality assurance for mammography and insurance
coverage for screening, diagnostic tests, treatment, and patient care costs of clinical trials.
Payment Policies
Decisions about health care coverage in this country should involve all members of our
society and take into consideration the society as a whole, government responsibilities,
and the concerns of business.
Increase access to affordable health care coverage by:
Eliminating pre-existing condition clauses.
Providing a universal health care package regardless of financial status or job or
career changes.
Utilizing and adequately reimbursing primary care physicians and other providers
such as nurse-practitioners and physician assistants.
20
10/07/93
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2:301 402 0212
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X
002
Journal Othics
(301) 496-6975
JOURNAL
OF THE NATIONAL
Building $2, Room 203
9030 Old Georgetown Rd.
TAX (301)402-0212;
CANCER INSTITUTE
Betheada, MD 2014
(301) 530-0705
Date: October 12, 1993
DRAT
MEMORANDUM FOR:
Science Writers and Editors on the Journal
and c Their
Press List
Fuel Van Nevel
From: Julianne Chappell, Managing Editor 301/496-6975
- Edoor
diesse Chappell
Subject: Highlights from October 20 Issue, No. 20
amging Ediner
(EMBARGOED FOR RELEASE 6 P.M. EST OCTOBER 19)
Review Finds No Breast Cancer Death Reduction From Mammography Guidline
Screening of Women in Their 40's
Medicare covers year)
Amid discussion of possible revisions in breast cancer
screening guidelines for women aged 40-49, Suzanne W. Fletcher,
M.D., American College of Physicians, and other participants in a
February 1993 National Cancer Institute (NCI) International
Workshop on Screening for Breast Cancer report the Workshop
findings in the October 20 Journal of the National Cancer Insti-
tute.
Convened to review current worldwide clinical trial data on
breast cancer screening and identify future research issues, the
Workshop focused principally on the 8 randomized controlled trials
(RCTs) of screening mammography conducted in nearly 500,000 women
aged 40-74 in the U.S., Sweden, Great Britain, and Canada over the
paot 30 years. Published and unpublished data were presented by
study representatives, as was a 6-study combined (meta-) analysis of
RCT data, excluding the newest results.
The data consistently confirmed earlier evidence that
screening women aged 50-69 reduces breast cancer mortality; a 30
percent benefit was apparent 5-7 years after entry into the trials.
For women aged 40-49, however, the Workshop concluded that the RCTs
showed no screening benefit 5-7 years after study entry, with only
marginal and uncertain mortality reductions apparent after 10-12
NATIONAL
ANCER
years of followup. A combined analysis of the Swedish studies
NSTITUTE
showed a statistically insignificant 13 percent mortality decrease
10/07/93
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402
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JNCI/ICIC
003
at 12 years. The only trial with followup exceeding 12 years showed
a 25 percent mortality decrease (of disputed statistical signifi-
cance) at 10-18 years. The meta-analysis estimates showed no
significant effect of screening, but with a wide range of uncer-
tainty in both directions (from a 15 percent mortality decrease to
a 39 percent mortality increase). Despite their high breast cancer
risk, too few women over age 70 were included in the trials to
assess screening effectiveness.
The authors acknowledge difficulties in drawing firm conclu-
sions from the data-study designs differed and each trial
experienced problems: insufficient statistical power for valid age
subgroup analyses; possible randomization problems; control group
screening outside of the study, different screening intervals (12-
33 months) and procedures (mammography, clinical breast examina-
tion, and breast self-examination alone or in combination),
variations in mammography image quality and procedures (one- versus
two-views per breast); inconsistent screening participation levels;
and followup and outcome classification variations. still, they
believe, the RCT data provide stronger evidence on breast cancer
screening effectiveness than is available for any other cancer.
Workshop participants made no recommendations regarding
current NCI/American Cancer Society mammography screening guide-
lines (i.e., mammography at 1-2 year intervals for women aged 40-
49, annually thereafter), but auggested future research questions.
Specifically, studies are needed to detormine the age at which
screening becomes beneficial and the age after which it may no
longer be useful, determine intermediate screening sensitivity and
specificity measures; assess the added value of two-view versus
single-view mammography, and determine the most effective screening
modality and screening intervals by age group. A new randomized
trial under way in the United Kingdom should determine if newer
mammography techniques translate into mortality reductions in women
beginning screening in their early 40's. Further, they say,
continued followup of the current RCT studies 18 needed to see if
screening benefit in younger women emerges in later years and to
clarify worrisome issues in some of the trials; a second meta-
analysis may be useful when more data are available. Finally,
quality control procedures and standardized reporting should be
developed for RCTs, and screening benefit for older women should be
investigated.
Two editorials accompany the report by Fletcher, et al.
Thomas C. Chalmers, M.D., Medical Research Consulting (West
Lebanon, New Hampshire), an expert on meta-analysis, writes that
while the 8 RCTs represent a significant body of data, methodologi-
cal differences, study problems, and issues these create for
aggregating data and generalizing findings make it impossible to
preclude potential screening benefit in younger women. He believes
two more studies are needed: First, an NCI-supported "mega-
analysis" of individual patient data from all 8 studies should
assess whether factors other than age (e.g., menopausal status)
determine when screening effectively reduces breast cancer
mortality. Second, if this effort or new data from ongoing breast
screening RCTs does not provide answers, a large international
trial that avoids past mistakes should be conducted to supplement
existing information. In the interim, he notes, third party payors
10/07/93 15:23 301 402 0212
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004
could support the research efforts and save health care dollars by
reimbursing mammography screening of younger women only when they
participate in a randomized, peer reviewed study. This approach
would also further a policy to support clinical trials and not pay
for unproven diagnostic and therapeutic interventions.
In the second aditorial, two radiologists--Edward A. Sickles,
M.D. University of California, San Francisco (UCSF), and Daniel B.
Kopans, M.D., Massachusetts General Hospital--maintain that the
Workshop findings minimize or ignore the RCTs' significant
methodological and statistical problems to reach unsupportable
conclusions regarding screening benefit for women aged 40-49. Most
importantly, they say, the RCTs were not designed to prove efficacy
in age subgroups and included too few women at each age to do BO.
Moreover, the conclusions ignore non-randomized trial findings
showing screening benefit (e.g., lower tumor grade/size, less
frequent lymph node involvement) among screened women in whom
breast cancer was found. Sickles and Kopans express special
concern that poor mammography image quality provided in the RCTs
masked screening benefit, and stress that modern mammography, which
vastly improved imaging of younger women' 6 breasts, renders the RCT
mammography results irrelevant to current screening policy
decisions.
Contact: Sue Montgomery, American College of Physicians, 1-
800-523-1546, ext. 2656. Editorial inquiries: Dinah Vaprin, New
England Medical Center, (617) 956-0200, and UCSF News Office, (415)
476-2557.
Copyright 1993 Reuters, Limited
October 4, 1993, Monday, BC cycle
HEADLINE: RULING ON LESBIAN ADOPTION GIVES CHILD TWO MOTHERS
BYLINE: By Sasha Cavender
Katie Love-Cooksey may not choose to follow in the footsteps of her mother, nationally
acclaimed breast surgeon Dr. Susan Love. But the five-year old girl is already famous as the
child in a landmark legal decision which allowed a lesbian couple to adopt her.
On Sept. 10 Love and her longtime companion Dr. Helen Cooksey, also a surgeon, were
the first gay couple to win such a ruling from the Massachusetts Supreme Court after a
long-running court battle closely monitored by both the homosexual and legal communities.
"We're thrilled and excited the court has decided to validate our family," said Love. "This
has been dragging on for years."
For Katie it simply means she has two mothers- something she accepts as perfectly natural.
She calls Love "Mommy" and Cooksey "Mama."
"I can't see any problem with it," Love said in an interview. "There are so many children
that are abused and abandoned, to criticize the makeup of someone's family life is
presumptuous."
The couple, who lived in Cambridge, Mass., for many years and taught at Harvard
Medical School, were anxious to have a child with biological ties to both of them. Cooksey
tried first to conceive by artificial insemination with sperm from Love's brother. When this
was unsuccessful, Love later conceived with sperm from Cooksey's cousin.
"Katie knows who her father is," said Love, who is well known for her candor with her
patients and treats her daughter the same way.
She said she, Cooksey and Katie all view the father as part of their extended family,
though he waived any adoption rights.
"What we told (Katie) is we love each other and we wanted to have a family and we asked
her father to help us. He was willing to give us a seed," said Love, adding that Katie has
asked to hear the story over and over again.
The couple has shared Katie's upbringing from birth. Both are financially responsible for
her, both volunteer at her school and spend weekends with her.
During the prolonged battle to adopt the little girl, a nun and a priest testified that the
family was close, loving and church-going. Teachers, colleagues, mental health professionals,
neighbors and relatives all testified that "the three form a healthy, happy and stable family
unit."
Educators who know Katie described her as an "extremely well-adjusted, bright, creative,
cheerful child who interacts well with other children and adults." Neighbors testified they
would have no hesitation in leaving their own children in the care of Love or Cooksey.
Last year the family moved from Cambridge to Los Angeles, where Love is director of the
Breast Center at the University of California at Los Angeles. Cooksey, a general surgeon, is
currently a full-time mother helping Katie adjust to life in a new city.
UCLA treated Love's recruitment to the university "like any other academicrecruitment,"
said Dr. Michael Zinner, chief of general surgery. "We discussed her family's needs in
moving here, a UCLA preschool for daughter, health benefits."
But officials were not so matter-of-fact four years ago when they tried to bar Love and
Cooksey from taking Katie on a trip out of the country, demanding that the child must have
her father's permission to leave.
The couple contacted attorney Katherine Triantafillou and the long struggle to win Katie's
legal adoption began.
The case was the first in Massachusetts, though New York, California, Vermont, Oregon,
Alaska and the nation's capital, Washington- have had court rulings allowing similar
adoptions.
"This is not just a gay rights case," Triantafillou said of the precedent-setting Massachusetts
court ruling. "It allows heterosexual, unmarried couples to adopt too. Clearly the time has
come to acknowledge that many, if not most of us, do not live in so-called traditional
families and the court's opinion reflects that reality."
Love has a number of 'firsts' to her credit. She was the first female surgeon appointed to
the staff at Beth Israel, a Harvard teaching hospital. And in 1988 she founded the Faulkner
Breast Center, the first in the United States to have five female surgeons and an all-female
medical, nursing and support staff.
"She changed the way other doctors do business," said Dr. Deborah Prothrow-Smith, an
assistant dean at Harvard School of Public Health and a former Massachusetts health
commissioner.
But so far Katie has no interest in becoming a doctor like both her mothers. She wants to
be a ballerina.
"I hope breast surgeons are obsolete by the time she grows up," said Love.