2006 Kidney Cancer Survivors Day

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2006 Kidney Cancer Survivors Day

• Patient Advocacy
• Steve Kazan
• May 6, 2006

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Introduction

• 39 years when first diagnosed
• 10 cm tumor removed July 2000, stage II
• 5.75 years with no evidence of disease
• Wonderful family
• Wife Ellen
• Kids Henry (7) Sophia (2)
• Support groupcoordinator
• Member of CA Foundation Board

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Patient Environment
Surgical
Family
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Philosophy

• Be aggressive
• With treatment
• Improve your health
• Be educated
• Learn as much as you can
• Based in science
• Fight fear with knowledge
• Be supportive
• Share resources, patients know best
• Share advice
• Spread the word

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Advocacy?

• Patient Support Group
• Educate (Presentations, postings, mailings)
• Patients
• Doctors
• Lobby (Letters phone calls)
• Government
• Pharmaceutical Companies
• Public opinion
• Fundraising

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NorCal Support Group

• Purpose To provide support for kidney cancer
  patients
• 4 Meetings a year _at_ CPMC
• 1-2 Speakers per meeting
• Posting presentations
• Patient to Patient Support
• Supported by KCA CA KC Foundation
• Thank you.

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Support Group Speakers

• Sample speakers
• Drs. Minor, Rini, Srinavas, Wood
• Pharmaceutical company representatives
• Sample Topics
• Clinical Trials Avastin, Heat protein, etc.
• Coping Nutrition, health insurance, exercise
• Issues updates science, public policy
• Support group interaction
• Research sources

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Presentations in Action
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Educational Resources

• Web pages
• http//www.cancer.org/docroot/
• http//www.curekidneycancer.org/
• http//www.cancerguide.org
• http//www.cancer.gov/cancertopics/types/kidney
• http//cancer.seer.cancer.gov/cgi-bin/
• Post presentations
• Support calls

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Upcoming Meetings

• Additional 2006 Meeting Dates
• June 3rd Members dialogue
• Sept. 16th
• Nov 18th
• Meetings are from 3 - 5 pm at CPMC, California
  Street, on Saturday afternoons
• Serve cookies, coffee fruit

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Money

• Is the Support Group a good deal are donations
  well-spent?
• YES!
• Leverage is the goal
• Meetings - 165 runs a meeting
• Stretching with volunteers
• Free meeting room
• Cheap postcards email invitations

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Does CK Funding Pay an ROI?

• Lets do the math

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National Cost of Kidney Cancer
Source Cancer Source UK of Population is
projected by American Cancer Soc. Estimated costs
include surgery, xrays, ct scans, drugs, office
visits Seer Medicare estimate was 1.9B in 2004,
2.7B in 2006 cited inBrown, M.L., Medical Care,
2002, August 40, IV-104-17 Does not include lost
work time, etc.
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What if We Could Change the Rate?
Yes, that is right, 300 million in savings Govt
funding is 30.5M 10 times greater!!!
Example
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Cost Benefit Per Individual
What if we could take one patient from a Stage X
to a Stage X-1?
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Support Group Payback
This is the payback on getting a single support
group patient to move up one stage.
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Government Funding per New CaseProjected 2005
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Government Funding per MortalityProjected 2005
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Are the Donations Worth It?

• Yes, in the extreme!
• What you can do to helpDONATE!
• California Kidney Cancer Foundation
• Kidney Cancer Association
• Benefit
• More better research
• More education to catch kidney cancer earlier

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Thank You!

• Be aggressive
• With treatment
• Improve your health
• Be educated
• Learn as much as you can
• Based in science
• Fight fear with knowledge
• Be supportive
• Share resources
• Share advice
• Spread the word

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Backup Slides
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National Policy

• 15M funding request in FY06 Defense
  Appropriation bill
• Dear Colleague letter from Senators Charles
  Schumer and Arlen Specter
• Meeting requests to Senators Boxer and Feinstein
  ignored
• Offers of participation welcome

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Growing Incidence Rates

• Survival rates (source American Cancer Soc.)
• All stages 62.6
• Local 89.9
• Regional 60.0
• Distant 9.1
• The incidence of Renal Cell Carcinoma has
  increased 38 from 1974 to1990.
• Source Figlin RA Renal cell carcinoma
  management of advanced disease J Urol
  1999161381-387
• the number of cases of kidney cancer has risen
  (in the U.K.) by 68 over the past 20 years.
• Source National Kidney Research Fund (United
  Kingdom)

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American Cancer Society

• 2004 incidence    2005 incidence   
  Increase
• All Cancer  1,368,030           
  1,372,910             .4
• Kidney Cancer      35,710             
  36,160      1.3
• 2004 mortality    2005 mortality    Increase
• All Cancer        563,700            
  570,280            1.2
• Kidney Cancer   12,480              
  12,660            1.4

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Cancer Action Plan
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Kidney Cancer Facts

• Usually occurs in adults between ages of 50 and
  70 but rising incidence among younger people
• third of patients have metastases at time of
  diagnosis
• Five-year survival rate in patients with
  metastasized Kidney Cancer is 9
• Kidney Cancer has been known to recur 5, 10, or
  20 years after original diagnosis and treatment
  (i.e. nephrectomy )

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Research

• Cancer deaths over last 5 years
• Prostate cancer decreased by 26
• Lung Cancer decreased by 8
• Kidney cancer increased by 2

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2005 KIDNEY CANCER SURVIVORS DAY

• MAY 6, 2006