UC Davis Cancer Center Sacramento, California September 27, 2008

Colorectal Cancer Community ForumFostering Advocacy

Key Learnings: Increasing Access to Screening and Care for One of the Most Preventable Forms of Cancer

University of California, Davis, Cancer Center

Colorectal Cancer Community Forum — Fostering Advocacy

1

How Can Legislators and Legislation Help Fight Colorectal Cancer?Susan McKee, District Director for Senator Darrell Steinberg, (D-Sacramento), incoming president pro tempore of the California State Senate––––––––––––––––––––––––––––––––––––––––––––––––––––––

Ms. McKee, a recent colon-cancer survivor, spoke on behalf of Senator Steinberg, who was unavailable due to tight legislative deadlines brought on by state budget delays. She opened with a reality check about the current economic crisis.

“The horrible economic situation that we’re facing right now has put a terrible strain on federal and state budgets,” said Ms. McKee. “And our intention to cover everyone who deserves to be covered is probably not going to happen in the next year or two.

“But we can work with legislators to help educate and influence their constituents. Mostly it’s a matter of getting in there and talking to folks about something they probably hadn’t realized. Intelligent lobbying is crucial.”

A case in point is Ms. McKee’s own story. She thought screening for colorectal cancer was supposed to be done at age 55, not 50. Despite having regular medical care, she was screened five years late. By that time, cancer had taken hold, and she suffered through surgeries, radiation and chemotherapy. –––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

“Intelligent lobbying is crucial.”–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Two easy things Ms. McKee recommended asking for from the legislature:

Public Service Announcements (PSA) – all legislators do these, and all have access to studio facilities to record PSAs

Articles about colorectal cancer – legislators use these at community forums and events in their districts

Ms. McKee pointed out that lobby days are particularly important in light of term limits. “The people you’ll talk to next spring will be brand new. They have no institutional memory about what’s gone on in the past.”

Call to ActionDaniel “Stony” Anderson, M.D. Kaiser Permanente Medical Center C4 Board President––––––––––––––––––––––––––––––––––––––––––––––––––

Dr. Anderson opened the conference with the call to action of increasing screening rates 10 percent, which would be 1 million more Californians over age 50.

His other key points:

Colorectal cancer is a preventable, treatable and beatable disease, but only with proper screening.

Screening for colorectal cancer is the most cost-effective cancer screening program, more so than breast cancer or prostate cancer.

–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

“Increasing screening rates just 10 percent in California would prevent approximately 8,000 deaths of our friends, family, neighbors and loved ones.”–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

The goal of the conference was to educate the group about:

Ways to screen for colon cancer

Disparities in screening based on where Californians live, their culture and their income

The barriers to screening

How to work with our state government to help reduce deaths from colorectal cancer

The newly formed California Colorectal Cancer Coalition (C4) held its first-ever community forum on September 27, 2008, in Sacramento, to increase awareness of the disease, its prevention, impacted populations and to explore ways to save lives through education and advocacy.

2

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Male African-Americans, Hispanic and Asian-PacificIslanders are more often diagnosed at a late stage2

Early-Stage Late-Stage

2 Stage is based on AJCC. Stage at Diagnosis of Colorectal Cancer Cases by Sex and Race, 2001-2005-Sacramento Region

Stage at Diagnosis by Ethnicity

0

7.5

15.0

22.5

30.0

27.0 21.818.4 25.0 23.7 24.5

14.3 16.9

Non-HispanicWhite Non-Hispanic

Black HispanicAsian-

Pacific Islander

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IR p

er 1

00,0

00

Female African-Americans, Hispanic and Asian-Pacific Islanders are more often diagnosed at a late stage2

Early-Stage Late-Stage

2 Stage is based on AJCC. Stage at Diagnosis of Colorectal Cancer Cases by Sex and Race, 2001-2005-Sacramento Region

Stage at Diagnosis by Ethnicity

0

7.5

15.0

22.5

30.0

19.0 17.019.1 27.6 15.8 15.8

13.8 16.2

Non-HispanicWhite Non-Hispanic

Black HispanicAsian-

Pacific Islander

Per

cent

of C

ases

Socioeconomic Status Level (SES)

Stage at Diagnosis by Socioeconomic Status3

Proportion of Colorectal Cancer Cases by SES Level and Stage of Diagnosis, All Races Combined, Sacramento Region, 2001-2005

Stage at Diagnosis by Socioeconomic Status

41.5 48.6 47.8 41.7 49.5 40.7 46.5 44.947.7 44.1

Early-Stage Late-Stage

SES 1–LowSES 2

SES 3SES 4

SES 5–High

0

12.5

25.0

37.5

50.0

Colorectal Cancer What the Numbers Tell YouMonica Brown, Ph.D. Epidemiologist, California Cancer Registry––––––––––––––––––––––––––––––––––––––––

Dr. Brown has had a long interest in translating cancer surveillance data into useful information for the public, and for cancer research and prevention. Dr. Brown, who serves as the regional cancer epidemiologist for the Sacramento region, says that cancer incidence rates in the Sacramento region are very similar to that of all California, with the exception of tobacco-related cancers which are higher than the rest of the state.

Since colorectal cancer is preventable, treatable and curable with proper screening, what the numbers tell us is who may not be getting screened or screened early enough. The consequences are a poor prognosis and early death. –––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

“Long-term survival is dependent on stage at diagnosis… The stage at diagnosis is related to socioeconomic status.”–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Stage at diagnosis of colorectal cancer is related to socioeconomic status and screening, both of which are usually related to access to healthcare, regular source of healthcare, immigration status and culture. For those in the lowest socioeconomic group, more of those are diagnosed at a later stage – when the prognosis is poor.

All stages based on AJCC. 1Five-Year Relative Survival Rate of Colorectal Cancer by Sex and Stage of Diagnosis, Sacramento Region, 1994-2005. 2Stage at Diagnosis of Colorectal Cancer Cases by Sex and Race, 2001-2005-Sacramento Region. 3Proportion of Colorectal Cancer Cases by SES Level and Stage of Diagnosis, All Races Combined, Sacramento Region, 2001-2005

0

22.5

45.0

67.5

90.0

89.2 88.037.1

41.0

5-ye

ar r

elat

ive

surv

ival

rat

e (%

)

Long-Term Survival Depends on Stage at Diagnosis1

Male Female

*Stage is based on AJCC

Late-StageDiagnosis

Early-StageDiagnosis

*Stage is based on AJCC. Five-Year Relative Survival Rate of Colorectal Cancer by Sex and Stage of Diagnosis, Sacramento Region, 1994-2005

Five-Year Relative Survival Rate of Colorectal Cancer by Sex and Stage of Diagnosis, Sacramento Region, 1994-2005

Colorectal Cancer Community Forum — Fostering Advocacy

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Colorectal Cancer Screening A Menu of OptionsMichael Potter, M.D. Professor of Clinical Family and Community Medicine, University of California, San Francisco–––––––––––––––––––––––––––––––––––––––––––––––––

Dr. Potter’s research focuses on practical approaches to increase colorectal cancer screening rates in diverse populations. This includes a recent project providing home colorectal cancer screening tests (FOBTs) to those age 50+ when they get their annual flu shot. –––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

“There are many ways to get screened. The best test is the one you can get done.”–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Dr. Potter focused on two issues: access to screening and then a way to act on the findings if cancer is suspected or detected. He began by reminding the group of a few key points:

Overall, colorectal cancer is the second deadliest cancer (after lung cancer) yet it’s one of the most preventable. “There’s just no excuse for that.”

Colorectal cancer screening is one of the few tests we have that can prevent cancer.

Most polyps will never become cancerous. But detection and removal of pre-cancerous polyps can prevent cancer.

Detection and removal of early-stage colorectal cancer improves long-term survival.

The menu of options includes the various tests recommended by the American Cancer Society, U.S. Preventive Services Task Force, and other professional societies for those over age 50. Dr. Potter’s key point: there are many ways to get screened for colorectal cancer. The best test is the one you can get done.

He explained each screening test in detail. These include the following:

Fecal Occult Blood Testing (FOBT) yearly, or

Fecal Immunochemical Testing (FIT) yearly, or

Flexible Sigmoidoscopy (FS) every 5 years, or

FOBT/FIT + FS, or

Double Contrast Barium Enema (DCBE) every 5 years, or

Colonoscopy every 10 years

CT colonography (“virtual colonoscopy”) every 5 years (not widely available yet)

Stool DNA test (sDNA), interval unknown (not widely available yet)–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

“Some tests are better than others for a given individual, but there is no ‘perfect test’ for everyone. That’s why we need to have a menu of options.”–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Dr. Potter commented that the disparities are a real indictment of our healthcare system.

Colorectal Screening Rates and Disparities (2005 NHIS)* Low Overall: 50% up to date in US

– Age Disparities

42.6% Age 50-59

56.6% Age 60-69

57.2% Age 70-79

– Ethnic Disparities

41.7% Asian Americans

45.9% Latinos

50.0% Whites

51.6% African Americans

– Type of Insurance

31.6% None

47.9% Private Only

48.3% Medicare Only

67.9% Military

*Shapiro JA, et al. Cancer Epidemiol Biomarkers Prev. 2008

91.466.1

8.5

5-ye

ar s

urvi

val r

ate

Survival Rates by Disease Stage

Long-Term Survival Depends on Stage at Diagnosis.1

Male Female

Stage of Detection

Local(Stage 1) Regional

(Stage 2-3) Distant(Stage 4)

0

25

50

75

100

4Note: Data from participating states and the District of Columbia were aggregated to represent the United States. Source: Behavioral Risk Factor Surveillance System CD-ROM (1996-1997, 1999) and Public Use Data Tape (2001, 2002, 2004), National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention and Prevention, 1999, 2000, 2002, 2003, 2005.

He comments that, in safety-net settings, the menu of options is often limited to Fecal Occult Blood Tests (FOBT) or Fecal Immunochemical Tests (FIT) with scarce colonoscopy resources reserved for follow-up of abnormal tests.–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

“Colorectal cancer is the second deadliest cancer (after lung cancer) yet it’s one of the most preventable. There’s just no excuse for that.”–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Dr. Potter closed with recommendations for a Colorectal Cancer Detection and Treatment Program for Uninsured Populations, as follows:

Average-Risk Patients

Don’t abandon low-cost tests

Assure follow-up with diagnostic colonoscopy for abnormal low-cost tests

High-Risk Patients

Develop a system to identify high-risk patients

Provide colonoscopy to those at high risk

Provide treatment for cancers detected

Costs and limited insurance coverage can limit access to the new tests. More emphasis needs to be placed on developing affordable strategies to reach everyone, especially the uninsured and those who lack a usual source of care.–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

“Screening rates are still horrifyingly low.”––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

“As a highly treatable disease given the proper screening and detection, colorectal cancer warrants open discussion on how to effect real change for the thousands of Californians it touches. The C4 Forum is a critical event in showing that there are concrete steps we can take now to help fight the disease. ”

– Senator Darrell Steinberg (D-Sacramento)President pro Tempore

31 34 39 41 4716 16 17 18 19

Endoscopy: Increasing for Everyone but the Uninsured*

Total

No Health Insurance

*A flexible sigmoidoscopy or colonoscopy within the past five years.

1997 1999 2001 2002 2004

0

12.5

25.0

37.5

50.0

Pre

vela

nce

(%)

20 21 24 22 198 9 12 9 9

Fecal Occult Blood Testing:* Declining Since 2001 in All Populations

Total

No Health Insurance

*A fecal occult blood test within the past year.

1997 1999 2001 2002 2004

0

7.5

15.0

22.5

30.0

Pre

vela

nce

(%)

Colorectal Cancer Community Forum — Fostering Advocacy

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Panel Discussion Colorectal Cancer ExperiencesSurvivor Stories and Access-to-Care Issues

Moderated by Jennie Cook Survivor and C4 board member

Panelists:

Ann Rubinstein Staff attorney for the Health Rights Hotline

Kathryn MarquardtSurvivor and C4 board member

Susan H. McKeeSurvivor and district director for State Senator Darrell Steinberg

Ms. Rubinstein, a health-rights advocate, shared three stories of clients of her organization, which takes calls from people dealing with insurance companies or who have no insurance at all.

She also noted that lack of access goes well into the treatment phase, a point illustrated by Ms. Marquardt’s story. –––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

“I know what it’s like to have a good experience, and that’s as it should be for everyone.” – Susan McKee, Survivor–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Insurance Can Be an Issue

Ms. Marquardt, a survivor, had an HMO, which promised to cover everything, but she had to fight with them to get the treatment she needed.

“It still continues to this day,” said Ms. Marquardt. “I was recently questioned on a colonoscopy even though I had stage 3 cancer and haven’t had a colonoscopy in two years.”

“But under and uninsured have it so much worse,” said Ms. Marquardt. “They could get a diagnosis and have nowhere to turn for treatment.”–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

“Even if we educate the uninsured, they still won’t be able to get the test.” – Ann Rubinstein, Health Advocate–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Timely Screening is Key

Ms. McKee, had just finished a year of treatment that included surgery, and simultaneous radiation and chemo.

“I know what it’s like to have a good experience and that’s as it should be for everyone,” said Ms. McKee. “I also know that had I been aware, and had my primary care doctor recommended it, that you’re supposed to get this screening at 50… I just thought it was 55.”

“I come from the educational perspective: why doesn’t everybody know?“

“Education is key and really helps the insured,” said Ms. Rubinstein. “But if we educate the uninsured they still won’t be able to get the test. Even though the test is low cost, you still have to pay for doctor visit. And beyond the screening, what if they do detect it?”–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

“My goal is to get colorectal cancer to roll off the tongue as easily as breast or prostate cancer.” – Kathryn Marquardt, Survivor–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

Overcoming the “Yuck Factor”

The panelists also said they felt there is a need to desensitize the issue and make it easier to talk about.

“My goal,” Ms. Marquardt, “is to get colorectal cancer to roll off the tongue as easily as breast or prostate cancer.”

There’s also the issue of what Ms. Marquardt called the yuck factor, particularly in preparing for a colonoscopy. “But, she said, ““I’ll take 10 preps if I could have avoided the whole cancer experience.”

Ms. McKee said that humor helps. “I can’t tell you a lot of the jokes that I’ve told on myself. Yeah, everybody has seen my ass.”

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Daniel “Stony” Anderson, MD, FACP – President GastroenterologistKaiser Permanente Medical CenterClinical Professor of MedicineUniversity of California, San Diego

Jon Greif, DO, FACS – Vice PresidentBay Area Breast Surgeons, Inc

Sandra Robinson, MBA – Secretary/TreasurerDirector, Mission DeliveryAmerican Cancer Society

Robert AlanizVice President, Communications & Public AffairsThe California Endowment

James Allison, MDClinical Professor of Medicine Emeritus University of California, San FranciscoDivision of Gastroenterology UCSF/San Francisco General HospitalAdjunct InvestigatorKaiser Division of Research

Eric BorsumManaging Partner, GMPainePR

Jennie R. CookPresident, Intercultural Cancer CaucusPast National Chair of the BoardAmerican Cancer Society

David W. Hamilton, MSN, CS, ACNP-BCDivision of GastroenterologySan Francisco General Hospital

Peter Heseltine, MD, FACP Vice President, Medical Director Beckman Coulter, Inc

Margaret Hitchcock, PhDUniversity of California, Davis (retired)Margaret Hitchcock Consulting

John Inadomi, MD Chief of Clinical GastroenterologySan Francisco General Hospital Associate Professor of Clinical MedicineUniversity of California, San Francisco Medical Center

Florence KurttilaSurvivor

Carol A. Lee, Esq. President and CEO California Medical Association Foundation

California Colorectal Cancer Coalition Board Michele Limoges-Gonzalez, RN, MSN, ANPDivision of Gastroenterology University of California, Davis Medical Center

Kathryn MarquardtSurvivor

Sharen Muraoka Director, Policy, Government Relations OfficeAmerican Cancer Society

Marlyn MurryChair of Diversity/Disparity and Legislative Advocate American Cancer Society, Calif. Division

Tung Nguyen, MDAssociate Clinical Professor of MedicineUniversity of California, San Francisco Medical Center

Jill Olmstead, MSN, NP-C Board President, 2008California Association for Nurse PractitionersGastroenterology DepartmentSt. Jude Heritage Medical Group

Joseph E. Scherger, MD, MPHClinical Professor of Family & Preventive MedicineUniversity of California, San Diego School of Medicine

Melissa WoodWestern Regional DirectorMedVentive, Inc

Sherry M. Wren, MD, FACSProfessorStanford University Chief of General Surgery Palo Alto Veterans Health Care System

EX – OFFICIO:

Don Lyman, MDChief, Chronic Disease & Injury Control Division California Department of Public Health

Neal Kohatsu, MD, MPHChief, Physical Activity, Nutrition & Obesity Branch California Department of Public Health

Kurt Snipes, MS, PhDChief, Chronic Disease Surveillance and Research Branch California Department of Public Health

1710 Webster Street, Oakland, CA 94612 (510) 893-7900 www.CaColonCancer.org

Forum SponsorsPlatinum Level: Fujinon Inc., Salix

Silver Level Sponsors: CMA Foundation

Gold Level Sponsors: Quidel

In-Kind Donors: American Cancer Society, Beckman Coulter, California Dialogue on Cancer, Colorectal Cancer Prevention Program, Kathryn Marquardt, UC Davis Department of Gastroenterology

Become a Friend of C4Join the fight to end colorectal cancer by joining C4

Receive updates on colorectal cancer education and awareness activities. Participate in colorectal cancer advocacy activities. Be part of a great organization helping to beat one of the most preventable cancers in the U.S. Visit www.CaColonCancer.org to sign up. Or send your name, organization, address and e-mail to C4 at the address below.

About C4C4, the California Colorectal Cancer Coalition (www.CaColonCancer.org) is an organization established to increase colorectal cancer screening rates, in an effort to decrease mortality rates associated with the disease. C4’s mission is to save lives and reduce suffering from colorectal cancer in all Californians.

Colorectal cancer is the third most commonly diagnosed cancer among California men and women and accounts for 11 percent of all newly diagnosed cancers. However, colorectal cancer is highly treatable when detected in the early stages through screening procedures and is even preventable.

The best test is the one you can get done. Some of the screening tests available include the following:

High-sensitivity Fecal Occult Blood Testing (FOBT) yearly

High-sensitivity Fecal Immunochemical Test (FIT) yearly

Flexible Sigmoidoscopy (FS) every 5 years

Fecal Occult Blood Testing (FOBT) yearly+ Flexible Sigmoidoscopy (FS) every 5 years

Colonoscopy every 10 years

Double Contrast Barium Enema (DCBE) every 5 years

CT colonography (CTC) every 5 years

C4 encourages individuals to discuss the screening test that is best for them with their doctor.

This report was produced by and made possible by a generous grant from