C3:Momentum

LEGISLATIVE BEAT

4, ISSUE 4
VOLUME 3, 3 Winning the fight better
Moving towards against colorectal
care cancer
and a cure SPRING 2008
SUMMER 2009

Do Your Phone Calls to Congress Make a Difference?

Pick Up the Phone!
Join C3 for Butt-in Day
On March 31, join forces with
advocates, cancer patients, and
By Carlene Canton
On March 31, C3’s annual Butt-in
phone campaign will once again
blanket Congressional offices with
phone calls urging elected officials to
866-615-3375
MAR. 31, 2009

friends across the country to make increase funding to fight colorectal

sure Congress hears loud and clear
that voters expect them to take
a stand and help fight colorectal
cancer.
On this single day, we “Butt-in” to
Congress’ regular business with a
flood of phone calls. Last year, C3’s
Butt-in campaign generated nearly
2,000 phone calls. This year we can
do even more -- if you help.
We make it simple: Call 866-615-
3375, enter your zip code at the
prompt, and you’ll be directly
connected to the offices of your
senators and representative.
Once connected, simply give your
name and say that you want the
senator or representative to support
the Colorectal Cancer Prevention,
Early Detection, and Treatment Act.
The more phone calls
each office receives
on this day, the more
attention to the cause.
Invite your friends and
families across the country
to make calls, too. For
more information, check
out the C3 website at
www.CoverYourButt.org
The Butt-in phone
campaign runs from 9
am to 5:30 pm EDT on
March 31. Join us.
cancer.
Phone campaigns are tried and true
political action tools—but do they
really work?
People organizing the events know
they do, which is why they spend their
time encouraging you to spend your
time making those calls.
For C3’s Director of Policy Joe
Arite, who heads up both the Call-on
Congress personal visit blitz and the
Butt-in phone event, the answer is
simple.
“Each voting American can and should
make their voice heard,” he said. “How
else will legislators know how their
constituents—especially those who
can’t come to Washington—feel about
an issue?”
But what do organized phone-in events
mean to members of Congress, and
especially their staffers who actually
pick up the phone? Has a phone
campaign ever changed a legislator’s
mind – or vote?
C3 advocate Tracy Patrick knows
first hand that the answer to that last
question is a resounding “yes!”
Tracy and her sister Tina Kiser worked
tirelessly last March to convince their
elected officials to sponsor legislation
helping colorectal cancer patients.
Tina had been diagnosed with stage
IV colorectal cancer in 2004. Sadly,
last year’s Butt-in phone campaign
would be her last. Tina passed away in
December 2008 at the age of 45.
But Tina’s last battle brought a
remarkable victory. Thanks largely to
Tina’s efforts, Rep. Zack Space
(D-OH) received 87 phone calls urging
him to support the Colorectal Cancer
continued on page 6
IN THIS ISSUE
FROM THE
PRESIDENT’S DESK.........................2
RESOURCES
What C3 Has to Offer......................3
POLICY
2009: Year of the Screening Bill...4
ADVOCACY
Meet an Advocate in Action.........5

1414 Prince Street, Suite 204, Alexandria, VA 22314

(703) 548-1225 • www.FightColorectalCancer.org
 FROM THE PRESIDENT’S DESK
Board of Directors
Nancy Roach, Board Chair Colorectal Cancer
Alan Balch, Ph.D, Vice Chair Awareness Month:
Greg Crafts, Treasurer
Personal Passion in Action
Robert Erwin, Board Secretary
By Carlea Bauman
Carlea Bauman, President President
Steven Depp, Ph.D.
We all know that March is Colorectal see it on page 7, where Ben Basloe,
Andrew Giusti, Ph.D. Cancer Awareness Month. Did you also C3’s new chief fundraiser, actually gets
know that March is National Caffeine excited about asking people for money,
Medical Review Network Awareness Month? And National all so that C3 can continue working
Nancy Baxter, MD, FRCSC Noodle Month? I’m not making this up. towards its goals.
University of Toronto
Al B. Benson III, MD, FACP National awareness months are a great At C3, we see Colorectal Cancer
Northwestern University way to start a conversation about a Awareness Month as a reason to
Richard Goldberg, MD particular need: Apparently, some of celebrate. Can you imagine ten years
University of North Carolina us need to be made more aware of ago, cancer patients walking up the
Axel Grothey, MD the benefits of noodles. But I think steps of the U.S. Capitol with the
Mayo Clinic College of Medicine that national awareness months can words “Cover Your Butt” on their
Heinz-Josef Lenz, MD, FACP result in change when T-shirts? Or even having
University of Southern California passionate advocates National Awareness a conversation with an
John Marshall, MD use the month to focus elected official about
Georgetown University Medical Center on changing their world. months can result colonoscopies?
Howard McLeod, PharmD And that’s what this issue in change when
University of North Carolina is all about: personal Colorectal cancer
passionate advocates patients are no longer
Neal Meropol, MD passion.
Fox Chase Cancer Center focus on changing hiding in the shadows,
Edith Mitchell, MD
On page 1, get inspired their world. ashamed to call their
Thomas Jefferson University by sisters Tracy Patrick disease by name.
Daniel Sargent, PhD
and Tina Kiser and their They are fighting
Mayo Clinic College of Medicine personal passion to convince their back against the disease, and against
Joel Tepper, MD
legislators to change their minds societal pressures to keep quiet about
University of North Carolina and act on behalf of other colorectal the very thing that threatens their
Medical Beat On the Hill
cancer patients. lives and livelihoods. In fact, they
are so passionate about the issue
On page 5, you’ll read about Marilia that thousands of them are willing
DON’T FORGET Sardinha, C3’s new Grassroots Action to literally wear their cause on their
CALENDAR Dusty’s Recipe for
Committee Vice-Chair, and her sleeves, and contact their legislators so
Get Your Rear In Gear Action
5K Run personal passion, which she found that laws may change. Despite the fact
Raleigh - March 7 when she stood on the edge of death
Central TX - March 15 that we’ve lost so many loved ones and
Philadelphia - March 22 and fought her way back. You’ll even will continue to do so until screening is
www.getyourrearingear.com widespread and a cure is found, there
C3 Call-on Congress is much progress to celebrate this
Washington, DC March. I hope you will join us.
March 22-25
www.FightColorectalCancer.org
Also, I hope you’ll join us in the
C3 Congressional Butt-in Congressional Butt-in on March 31st
866-615-3375
March 31 (see story on page 1) and use your own
www.CoverYourButt.org personal passion to get your friends,
Prevent Cancer’s Dialogue for Action in family, neighbors and co-workers to
Colorectal Cancer Screening Conference call in that day. You just might surprise
Baltimore, MD yourself with how good it makes you
April 2
www.preventcancer.org feel.

2 www.FightColorectalCancer.org
 RESOURCES
LEGISLATIVE BEAT
C3 Resources: Communication a Top Priority
Communication is key to relationships.
Your relationship with C3 is no
exception.
“We have some of the best resources
and most up-to-date information in the
field, and we want to make it easy for
you to access it,’’ says Carlea Bauman,
president of C3.
That’s why C3 offers multiple
avenues of communicating. We focus
on resources that aren’t available
elsewhere for those affected by
colorectal cancer.
Here is an overview of what’s available
at C3. If you don’t find what you’re
looking for, call the C3 Answer Line
(877-4CRC-111).
Patients and Survivors
If you’re coping with colorectal cancer,
your desire for information is probably
matched only by your need for facts
that are meaningful, up-to-date, and not
overwhelming.
On the C3 website, the Patient
Information section provides facts
in layers (under the Awareness &
Education heading). Click and read
as much as you want and come back
for more when you’re ready. You’ll
find up-to-date, medically reviewed
information on diagnosis and
treatment; tips for living with colorectal
cancer; ideas for coping emotionally;
and ways to deal with the financial
stresses that accompany cancer.
The free 80-page booklet “Frankly
Speaking About Colorectal
Cancer” is available by calling
the C3 Answer Line (877-4CRC-
111) or ordering online at www.
FightColorectalCancer.org/
FranklySpeaking.
For questions about your specific
situation, call the C3 Answer
Line (877-4CRC-111), or send
C3 Momentum Spring 2009
Visit www.FightColorectalCancer.org to find these resources and more.
an email from the website. (Under
the Awareness heading, click on
C3 Answer Line.) An Answer Line
Associate will answer your questions
on the spot or do some research and
get back to you.
Family and Friends
An informed circle of family and
friends can help patients coping with
colorectal cancer.
The Awareness & Education
section on C3’s website has a wealth
of advice about helping people help
you. There’s information specifically
for family or friends who must care for
themselves to be able to care for their
loved ones. The website also offers
links to other reliable resources.
Anyone in the extended circle of family,
friends, or advocates helping a loved
one through colorectal cancer can call
the C3 Answer Line for help getting
information or connections.
Patients and Practitioners Managing
Ongoing Disease
Treatments for colorectal cancer are
evolving, so prompt and accurate
dissemination of research is crucial.
You can rely on C3 to monitor and
accurately summarize news related to
colorectal cancer.
The Research section of C3’s
website is a timely and reliable
resource. C3’s own Kate Murphy is
a 26-year colorectal cancer survivor
and a long-time patient advocate. She
files stories under Research and
Treatment News about clinical trials,
research findings, FDA warnings, and
other news. Readers can comment or
pose questions on each article. Every
Friday, the “News in Brief” adds short
reviews of other research and news
with links for more details.
The C3 website features an interactive
blog with Dr. Heinz-Josef Lenz,
Chair of the Gastrointestinal Oncology
Program at the University of Southern
California and a member of C3’s
Medical Review Network. (See From
the Desk of Dr. Lenz under Awareness
& Education.) He answers questions
sent by readers, and writes often
about how to get the best quality care
(e.g., how to evaluate a surgeon who
might perform your colorectal cancer
surgery).
Sign up to receive their posts via email
or RSS at www.FightColorectalCancer.
org/subscribe. You can also follow
C3 on Twitter at www.Twitter.com/
FightCRC.
continued on page 6
3
 POLICY & ADVOCACY

Let’s Make 2009 The Year of the Screening Bill

By Joe Arite

A new era in
government is
here. Our goal of
eliminating barriers
to colorectal cancer
screening may finally
become a reality.
Representatives
Kay Granger (R-TX) and Patrick
Kennedy (D-RI) have reintroduced the
Colorectal Cancer Prevention, Early
Detection, and Treatment Act and are
calling on C3 to mobilize the troops.
That is exactly what we are doing
with our Call-on Congress and our
Congressional Butt-in phone campaign
this month.
What the bill will do:
This bill will establish a program
at the Centers for Disease Control
and Prevention (CDC) to provide
colorectal cancer screenings and
treatment for low-income, uninsured,
and underinsured individuals who are
not yet eligible for
Medicare.
With this bill, the Medicare
The program is
program could translate to
similar to the National
Breast and Cervical an eleven year savings of
Cancer Prevention,
$7 to $21 billion, simply by
Early Detection, and
Treatment Program
diagnosing
that has been in through screening.
place for more than a
decade. This program
has saved the lives of millions of
American women by detecting breast
and cervical cancers and following up
the diagnosis with treatment. It’s time
to do the same for colorectal cancer.
Despite the passage of the Balanced
Budget Act (BBA) of 1997, which
authorized coverage for colorectal
cancer screenings for Medicare
recipients, too many people still
don’t get screened. Yet as many as 60
percent of deaths could be prevented
if everyone aged 50 and older were
screened regularly, according to CDC
estimates. 1
Not only will this proposed program
save lives, but it will save dollars,
too. A preliminary report issued by
The Lewin Group, in collaboration
with the National Colorectal Cancer
Roundtable, looked at how increased
colorectal cancer screening among
pre-Medicare eligible individuals
(aged 50-64 years) could translate into
Medicare savings.
Savings occur when
colorectal cancer
is caught early and
treatment costs are
low. For patients
with metastatic
people earlier colorectal cancer,
just two months
of treatment cost
between $20,000 and
$30,000. Earlier detection saves both
lives and dollars. 2
The report predicts that savings to
Medicare will begin in the second
year of the program, and could
translate into an eleven year savings
of $7 to $21 billion.
So why is the Colorectal Cancer
Prevention, Early Detection, and
Treatment Act being “reintroduced”?
Last year, during the 110th Congress,
C3 and our advocates were able to
recruit more than 160 Members of
Congress to support this bill. While
160 co-sponsors should have been
enough to get the bill passed, Congress
ran out of time. We have high hopes
that this year will be different and we
will see the legislation come to fruition
in the 111th Congress.
But we still need your help to make
that happen! Members of Congress
listen carefully to one voice: The
voters. That means you and your
family, friends, neighbors, and co-
workers. We must all get on the
phones, or get in those offices and
make sure each Member of Congress
realizes the importance of this
legislation.
For more information on how to
participate in C3’s Butt-in phone
campaign on March 31, see the cover
story and Page 8 of this issue of
Momentum.
For more information about
this legislation, check www.
FightColorectalCancer.org/
crcscreeningbill.
1
The Centers for Disease Control and
Prevention (CDC). Underuse of Screening.
Website: www.cdc.gov/cancer/colorectal/
statistics/screening_rates.htm
2
Schrag D. The price tag on progress—
chemotherapy for colorectal cancer. N Engl J
Med. 2004;22;351(4):317-19

4 www.FightColorectalCancer.org
 POLICY & ADVOCACY
Advocates in Action:
Introducing An Inspirational Marilia Sardinha
Meet Marilia Sardinha, a 41-year-old
single mom, born in Portugal and
now living in a small town in central
Maine. She’s a cancer survivor and
an amazing advocate. As the new
vice-chair of C3’s Grassroots Action
Committee, she’ll be writing regularly
for Momentum. Marilia’s story and
advocacy efforts boggle my mind. But
she should tell her own story...
--Joe Arite, Director of Policy
In January 2004, I started a wrenching
physical and emotional journey.
Despite having no family history of
colon cancer, I found myself with stage
IIIb colon cancer at age 36.
I had known something was wrong.
For 16 months before my diagnosis,
I had abdominal cramping and pain.
Despite repeated doctor appointments,
with diagnoses and treatment for
both anemia and an ulcer, my pain
got worse. Finally, just days before
a scheduled colonoscopy, my pain
became unbearable. Doctors in
the emergency room decided I had
appendicitis and needed surgery.
Instead of appendicitis, the surgeon
found a three-centimeter tumor in my
colon, plus cancer in two of 27 lymph
nodes.
That was just the first
I urge you to become
step in my journey. To C3 advocate—not just
this day, I still have in March but through
few memories of the
the year. Respond
following month.
Right after surgery, I
action alerts. Spread the successfully eliminated
developed a serious word. Together, we are
infection throughout tremendously powerful. appeared two months
my body and multiple
blood clots. I was rushed to another
hospital, but the damage was already
done. My right leg was amputated
below the knee. I also needed an aortic
stent and an ileostomy. At that point, I
was critically ill with acute respiratory
C3 Momentum Spring 2009
failure. Trying to save my life, the
doctors put me into an induced coma.
I went to sleep in January thinking
I had appendicitis, and woke up in
February with cancer and only one leg.
Worst of all, my 12-year-old son saw
me leave for the hospital one night,
and was told I’d be home the next day.
That day turned into a month. He saw
me for a few moments during that
month, but I don’t remember. My baby
boy. My heart. My joy. My life. Marilia’s son (left) is her inspiration.
I survived thanks to a surgeon who 16-year-old son, and I’m engaged to be
fought hard to save my life, and my married.
“mother’s will” to not leave my child.
I believe my life purpose is to use
But I had changed from an active, self-
employed single mom to a 90-pound these experiences to support and lift
person too weak to walk. I was even and maybe even save someone else.
too weak to start chemotherapy for Since my treatment ended, I started
several months. an amputee support group; became
a certified peer counselor for new
In 2005, I finished cancer treatment amputees; and have supported newly
and my life began to look up. But in diagnosed colorectal cancer patients in
early 2006, tests showed that I had new Maine. I testified in support of a Maine
tumors in my abdomen. Chemotherapy law requiring insurance coverage for
helped, but one tumor kept growing. colorectal cancer screening, which
My best friend, an incredibly smart and passed and has just taken effect.
persistent advocate, found out about
In March 2007, I became involved
Cyberknife—robotic radiosurgery used
with C3 through the Call-on Congress.
for certain cancers. She finally found
For the first time, I met colorectal
an Oklahoma surgeon
cancer patients and survivors my age.
who was willing to try
a it on my type of tumor.
I never imagined that I would be in
Washington DC, sharing my story with
Against my physicians’
Congress, but the other advocates
advice and despite
inspired me with their strength and
refusal of insurance
to passion. Today, I meet regularly with
coverage, the procedure
my elected officials and help new
advocates understand how to raise
the tumor. However,
another small tumor
their voices effectively.
I urge you to become a C3 advocate—
later, so I did another 9 not just in March but throughout
months of FOLFIRI treatment. the year. Respond to action alerts.
Spread the word. Together, we are
Since then, three scans have shown tremendously powerful.
no evidence of cancer. I celebrated my
40th birthday—a day I wasn’t supposed I have HOPE…and I am sharing it with
to see. I am raising a wonderful, caring you. Join me!
5
 ACTION
Do Your Phone Calls to Congress Make a Difference?
continued from page 1
Prevention, Early Detection, and
Treatment Act. Tina reported to her
sister that by the end of the day, office
staffers were jokingly begging her “not
to mention the words ‘Cover Your Butt’
to them ever again.” More importantly,
she won Rep. Space’s support. After
the Butt-in phone campaign, he signed
on as a co-sponsor of the legislation.
Even better, he was assigned to the
committee that will oversee the new
bill in the 111th Congress.
Tracy remembers that victorious Butt-
in day “like it was yesterday.”
“Tina was so happy that her efforts
made Ohio one of the top states for
generating phone calls. She was so
proud of her work and the support
that she was given. She also took
great pride in knowing that she had
influenced Zack Space to make a
positive choice.’’
Tina successfully accomplished the
bottom-line goal of a phone campaign:
Calling attention to an issue and
getting someone with influence to
listen. “If 87 phone calls come in,
C3 Resources: Communication a Top Priority
continued from page 3
Political and Policy Advocates
Both governmental and medical
leaders recognize C3 as one of the most
reliable, accurate, and effective voices
in national and local efforts to fight
colorectal cancer.
The C3 website’s Policy section is a
rich source of practical advocacy tools
(see the Advocate’s Toolkit); a review
of how government funds colorectal
cancer research and how the political
machine works; and fact-filled position
papers on current legislation (at
Where We Stand). For inspiration, read
profiles of advocates in action all over
the nation (see Advocates at Work).
6 www.FightColorectalCancer.org
Tina Kiser’s “Call-on” Rep. Space (D-OH)
made the difference before her death
in 2008.
they’re likely to at least be curious
about what issue is causing people to
feel so strongly,” Tracy said.
That’s true, according to other
congressional staffers we polled
about how phone-call campaigns
affect their positions and policy-
making. Constituent phone calls can
be persuasive and can influence a
staff person’s position. One piece of
practical advice: Short messages work
best. If staffers decide to pursue the
C3 Policy Director Joe Arite posts
legislative and policy news stories
regularly on C3 Policy & Advocacy
News, and responds to questions
posted by readers at the website. Sign
up at www.FightColorectalCancer.org/
subscribe.
C3’s Action Center (under Policy
at the C3 website) helps you make an
immediate impact. Today’s top issues
pop up, complete with a factual email
you can send automatically to your
government representatives just by
adding your name and zip code. Check
it out at http://advocacy.fightcrc.org.
Cover Your Butt is C3’s campaign
issue, they will do their own research.
And yes, staffers agreed, the sheer
volume of calls may actually cause the
staff (and ultimately the representative
or senator) to re-evaluate the facts and
their position.
That means anything can happen. Tina
will be forever remembered for her
advocacy and work in raising public
awareness of colorectal cancer.
Tracy Patrick is determined to
continue her sister’s work, bringing
public attention to colorectal cancer,
instead of it being “a cancer that no
one talks about.” In fact, she plans to
return to the 2009 C3 Call-on Congress
in Washington, DC, March 22nd-25th.
Join the cause to get people talking –
and listening. Now that you know the
difference that your call can make,
circle March 31 on your calendar and
make a few calls that day. You can
make a difference.
to ensure that every American
receives screening. Find the facts plus
action links at C3’s special website
www.CoverYourButt.org.
These are just some of C3’s resources.
Check out the continually updated
website. Sign up for email updates at
www.FightColorectalCancer.org/
subscribe. And you can always call the
C3 Answer Line with any question.
1-877-4CRC-111
 C3 FUNDRAISING
Development Director Ben Basloe Joins C3 Staff
by Carlene Canton
As C3’s new and first Director of Devel-
opment, Ben Basloe’s job is to reach out
to foundations, corporations and indi-
vidual donors so that C3 can continue
its efforts to end colorectal cancer.
It’s a challenge he embraces whole-
heartedly with passion and enthusiasm.
But he is also something of a realist.
He understands that these are tough
times for fundraising of all kinds.
Thanks to the current shrinking econo-
my, nonprofit organizations across the
country are stuck between the prover-
bial rock and the non-too-comfortable
hard place. At the same time that foun-
dation grants become more precious
and precarious than ever, corporations
and individuals tend to take a step or
two back as well.
One solution, he says, is to go back to
the roots: grassroots. The concept that
smaller donations spread across larger
numbers of donors can make a differ-
ence is back in style.
“In these difficult economic times,
corporations are cutting back on their
charitable giving and foundations find
themselves with less money to fund
their efforts,” he said. “For organiza-
tions trying to reach a specific revenue
goal, it means they need to look to indi-
vidual giving and fundraising efforts to
supplement other sources of funding.”
C3 is fortunate that it has developed a
reputation as an effective and efficiently
run organization and has always had “a
strong tradition of respecting, encour-
aging and appreciating grassroots fund-
ing efforts and events,” he said. “That
reputation serves us well whether we’re
looking for funds from individuals, cor-
porations or foundations.”
“I have every intention of continuing
and expanding our relationships with
grassroots donors as well as with cor-
C3 Momentum Spring 2009
Ben Basloe is C3’s first Director of Development.
porations and foundations – new and
old,” he said. “One of the first steps is
to make sure that our message and our
mission are out there loud and clear.
In tighter economic times it’s essential
that donors have crystal-clear under-
standing about who they are donating
to, where the money goes, and what it
will accomplish.”
Like many people connected to C3,
Ben’s path to his new post has both
personal as well as professional origins.
His journey began with the desire to
do something with his life that would
honor his father who died of cancer in
September 1998.
In tighter economic times it’s
essential that donors have crystal-
clear understanding about who
they are donating to, where the
money goes, and what it will
accomplish.
He participated in an annual walk
fundraiser for a cancer organization
where he appealed to friends and fam-
ily as well as hosted a golf tournament
with the help of his employer. He raised
more than $10,000 for that local chapter
-- the largest individual fundraiser for
the year.
He was hooked. He decided fundrais-
ing was his career choice as well as a
personal mission. He worked four years
with the American Diabetes
Association and two years as a consul-
tant to nonprofits, a role he mastered
while staying at home and sharing the
care of his newborn son, Aidan, with his
wife Mary.
Now Aidan is ready for preschool and
Ben is ready to devote his time, experi-
ence, and passion to C3.
Ben may be a realist but he’s a realist
who can dream. And for inspiration he
looks to the 2008 presidential campaign
where grassroots funding had a stun-
ning impact.
“Both candidates showed the value of
engaging their supporters and getting
large numbers of donors to contribute
smaller amounts of money resulting
in millions of dollars raised,” he said.
“Just imagine the difference that could
be made if that amount of money was
raised for a nonprofit organization like
C3 and used to win the fight against
colorectal cancer.”
7
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On Tuesday, March 31st call 866-615-3375.

Mark the date on your calendar! Tell your friends!
When you reach the offices of your elected
officials, simply say, “I urge my Senator/
Representative to support the Colorectal
Cancer Prevention, Early Detection, and
Treatment Act.”
You only have to make one call. You will

866-615-3375 MAR. 31, 2009

Who: You!
What: The C3 Congressional Butt-in
When: Tuesday, March 31, 2009
Where: By Telephone
be prompted to enter your zip code, and
be directly connected to the offices of your
Members of Congress (your two senators
and representative).
Your efforts could help create a National
Colorectal Cancer Screening Program—
so urge your friends and family to join in!
For a detailed phone script,
log on to www.CoverYourButt.org.
Have a mobile phone? Text BUTTIN to 30644 now and
we’ll message a reminder right to your phone on butt-in day.

How: Call 866-615-3375 to get A campaign of C3: Colorectal Cancer Coalition.

Made possible thanks to charitable grants from
connected to Congress
8 www.FightColorectalCancer.org