"Saving Lives Through Patient Support and Advocacy."
Year 2000 In Review
November 29, 2000
Status Report
Colorectal Cancer Network
This past year has been one of exciting progress in outreach, in collaborative efforts,
and in building the support network to uphold those diagnosed with colorectal cancer.
In 2000 our support network went from being in Maryland to being in seven states with
requests now coming in from Canada, Europe, Malaysia, and Australia. Nearly ten states
are already on the project schedule for 2001. In addition we have helped other organizations
and hospitals start support groups in three states where we do not have a lot of reach:
New York, Washington, and North Carolina.
Our first chapter is being formed in California. It will officially launch in March. Chapters
are formed when there is local survivor and community support to sustain a comprehensive
program addressing the issues of colorectal cancer. They address this cancer through:
1) a support network which includes support groups, patient visits, connecting newly
diagnosed patients with longer term survivors,
2) local and regional awareness programs, and
3) local and national legislative efforts.
Our network of support includes the matching of newly diagnosed and long term survivors,
patient visits, a patient information kit designed for newly diagnosed survivors, listservs,
a literature and video library, an extensive weblinks library as well as our network of
face to face support groups.
A pilot program was run targeting college age pre-med students at the request of a sorority
and the Charles Drew PreMed Society at the University of Maryland. This focused on
education about colorectal cancer prevention and screening, and strongly encouraged the
participants to immediately work with their families to determine their health history.
Our newsletter, "The Full Scope" was launched with the first issue focusing on metronomic
therapy, the critical role of nurses (SGNA, Nancy Schlossberg), newly approved treatments,
and barriers to clinical trials participation.
Our Science Medical Advisory Board was formed. It includes Monica Betagnolli MD (Brigham),
Judith Dempster DNSc (AANP), David Rubin MD (Univ. Chicago), Robert Mayer MD (Dana Farber),
Michael Choti MD (Johns Hopkins), Stephen Powell MD (Univ. Virginia), and
Michael O'Connell MD (Mayo). It is an honor to have the help and guidance of these professionals.
Legislatively we have participated primarily through and in coordination with the Cancer
Leadership Council and One Voice Against Cancer. We have helped to bring issues before our
Senators and Representatives on: medicare reimbursement of clinical trials, the need to
postpone HCFA changing the reimbursement rates on cancer drugs until the associated fees are
re-examined, the Cancer Screening Coverage Act of 1999, the House Concurrent Resolution 133,
the Senate Resolution 108 which declared March as National Colorectal Cancer month
(lead by CRFA), the Patient Bill of Rights, Appropriations, the Medicare Wellness Act (S.2232),
the Medicare Preventive Care Improvement Act (H.R. 1968), the Millennium Cancer Research Act
(H.R. 5419), stem cell research, drug importation, oral cancer drugs, genetic testing, coverage for PET
scans, and privacy issues. As well, we participated in collaborative legislative efforts to bring issues
for breast, cervical, lung, brain tumor, children's cancers, multiple myeloma, lymphoma and leukemia,
skin, kidney and ovarian cancers. We testified in front of the Maryland Senate on colorectal cancer
insurance coverage and participated in the efforts that caused the Virginia State Senate bill SB26 to be
passed - which requires that Virginia insurance carriers cover colorectal cancer screening.
We participated in the WebMD Rock and Race - including distributing over 10,000 FOBT
kits and colorectal cancer prevention, screening and detection literature. We were interviewed
by Comcast (airing in December 2000). Our membership is has doubled. And we are preparing for our
Colorectal Cancer Survivors Conference in March 2001. This is a four day format beginning with
Thursday and Friday in a traditional science/medical seminar format, followed immediately by two days of
holistic retreat format. This conference includes a large clinical trials education section and is a leap
forward in the strengthening of this new community of colorectal cancer survivors.
Year 2000 also moved our commitment to clinical trials forward. We were consulted by several
pharmaceutical companies about clinical trials design. Our Chair of the Board, Dr. Pamela McAllister,
was added to the Director's Consumer Liaison Group (DCLG) - an advisory board to the Director of the
National Cancer Institute. We added several clinical trials search engines to our web library. We
campaigned heavily on the "Hill" to get clinical trials usual medical costs covered by Medicare -
and we hope to now see all insurance companies follow this lead.
Past Advocacy Projects:
July 17, 2000 With the Cancer Leadership Council
Letter sent to Nancy-Ann DeParle, Administrator of HCFA regarding Medicare program criteria for making coverage decisions (HCFA-3432-NOI) published in the Federal Register on May 16, 2000.
July 14, 2000 With the Cancer Leadership Council
Letter sent to President Clinton expressing appreciation for his Executive Memorandum requiring Medicare to cover routine patient costs associated with clinical trials. This letter also expressed our concern with the Health Care Financing Administration's (HCFA) initiative that is reconsidering the reimbursement rates for chemotherapy drugs but not the reimbursement rates for the other costs associated with receiving chemotherapy.
Copies were also sent to The Honorables Albert Gore Jr., Donna Shalala, Nancy-Ann Min DeParle, William V. Roth Jr., Daniel Patrick Moynihan, Connie Mack, Dianne Feinstein,, Thomas J. Bliley Jr., Bill Archer, Michael Bilirakis, William M. Thomas.
June 8, 2000 With the Cancer Leadership Council
Letter sent to The Honorable Bill Archer, Chairman, Ways and Means Committee
Congratulation him on a fair legislative formula for a balanced budget but expressing concern that the Dept of Health and Human Services is seeking to redefine the meaning of average wholesale prices for prescription reimbursement without reevaluating the other reimbursement costs. This will mean that physicians would have to lose money in order to give their patients chemotherapy in their offices instead of in a hospital - an arguably more expensive option.
Copies were sent to The Honorables Michael Bilirakis, Bill Thomas, and Thomas Bliley Jr.
March 6, 2000
Written testimony submitted to the Senate Special Aging Committee's hearings on Colorectal Cancer. Other speakers are: Katie Couric, Shirley Heiligman, William Scanlon, Michael McMullan, Bernard Levin.
March 1, 2000
First Annual National Colorectal Cancer Awareness Month, Senate Rayburn Building, Washington DC Participants and educational information providers
March 1,2000
Participants - Senate Caucus on Angiogenisis, Rayburn Bldg
Underserved Populations and the Impact of Colorectal Cancer, Talk and discussion presented to college age men and women (African Americans, Hispanics, Asians) Co-Sponsored by the CCNetwork and Delta Sigma Theta Sorority , and the Charles Drew Pre-Med Society
January 5-7, 2000
Colorectal Cancer Progress Review Group
Janurary 2000
MARCH IS DECLARED NATIONAL COLORECTAL CANCER AWARENESS
MONTH!
Oct 27, 28, 29th 1999
Summit Conference on Clinical Trials III participants
October 23, 1999
"Cancer Education Day", Holy Cross Hospital, Silver Spring, MD
September 25, 1999
Rays of Hope
Washington, DC
Sponsored by National Coalition for Cancer Survivorship
CCNetwork participated in the Rays of Hope: Provided
an information booth was provided by the CCNetwork and
funding by a grant from Pharmacia and Upjohn; lit the
colorectal cancer candle at the vigil; participated in
the luncheon for Queen Noor.
February 25, 1999
Community Leaders Forum on Colorectal Cancer, Sponsored by the CDC and ACS at Georgetown Univ. Conf. Ctr, Wash. DC
February 10, 2000
CCNetwork spoke at the FDA hearings for "Quality of
Life Issues for Cancer Patients"
CCNetwork participated in legislative efforts
spearheaded by:
Cancer Research Foundation of America
American Digestive Health Foundation
National Colorectal Cancer Roundtable
to make March declared National Colorectal Cancer
Awareness Month. November 19th, 1999, this legislation
was passed.(S. Res. 108), sponsored by Senators John
Breaux (D-LA), Connie Mack (R-FL), Frank Murkowski
(R-AK) and Tim Johnson (D-SD).
CCNetwork Advocacy Listserv:
Clinical Trials: 2000
CCNetwork is working towards getting the
chemoprevention clinical trial that Dr. John
Burn, University of Newcastle, UK, as principal
investigator is undertaking which may benefit HNPCC
survivors. The CCNetwork encourages basic research
to improve the outcomes for colorectal cancer
survivors which in turn is based on clinical trial
data for scientific assessment. Therefore, we
would like to encourage cooperation with international
laboratories and clinics to increase clinical trial
recruitment which will reduce evaluation times and
speed access to new treatment modalities for
colorectal cancer patients. The present trial is
being conducted at fifty-five centers worldwide so we
would like to permit patient access from the United
States which may potentially help HNPCC patients,
provide a broader base of support for important
research, and foster international scientific
cooperation.