Building 31, Room 10A24
Bethesda, MD 20892

FOR IMMEDIATE RELEASE
Thursday, September 07, 2000

NCI Press Office
(301) 496-6641

The National Cancer Institute (NCI) has indicated its intent to appoint five new members to the NCI Director's Consumer Liaison Group (DCLG). The DCLG is a forum for exchange of information and perspective between the cancer advocacy and scientific communities.

The new members are: Barbara LeStage, Wrentham, Mass.; Pamela McAllister, Fitchburg, Wis.; Nyrvah Richard, New York, N.Y.; Henry Porterfield, Hinsdale, Ill.; and Paula Simper, Rancho Palos Verdes, Calif.

All DCLG members serve three-year terms.

The DCLG makes recommendations to the director of NCI from the consumer advocate perspective on a wide variety of issues, programs, and research priorities. The DCLG, comprised of consumers who are involved in cancer advocacy, reflects the diversity of those whose lives are touched by cancer. NCI brings together these advocates for regular meetings that create a two-way forum for direct interactions with the scientific community at NCI.

As a chartered federal advisory committee, the 15-member DCLG works with NCI to help the Institute increase its involvement with the cancer advocacy community. Together they ensure that those who experience the burden of cancer help to shape the course of NCI's efforts to eradicate the disease. The DCLG has been a model for incorporating consumer opinions and concerns into the planning and review of programs at the National Institutes of Health (NIH).

The threefold purpose of the Group, which meets several times a year, is to:

• Help develop and establish processes, mechanisms, and criteria for identifying appropriate consumer advocates to serve on a variety of program and policy advisory committees responsible for advancing the NCI mission.

• Serve as a primary forum to discuss issues and concerns and exchange viewpoints that are important to the broad development of NCI program and research priorities.

• Establish and maintain strong collaborations between NCI and the cancer advocacy community to reach common goals.

During its first two years, the DCLG has provided a rich source of ideas and viewpoints. The Group assisted in developing a primer, "Understanding Genetic Research and Population-Based Studies," focusing attention on the issues that concern individuals who participate in this research. The booklet was distributed to members of the NCI advisory boards and the cancer advocacy community. In addition, the DCLG reviewed revisions of informed consent documents for participants in clinical trials, and provided ideas for their dissemination. The group also is working with the NCI to develop a formal process for involving advocates in Institute programs.

Most of the newly appointed DCLG members are cancer survivors, but family members of cancer patients and health professionals involved in cancer advocacy are represented, as well. The cancer experience of the new members includes prostate, breast, colorectal, and pancreatic cancers.

More information about the DCLG, including a membership roster, meeting agendas and meeting summaries, can be found online at http://www.cancer.gov by selecting "Advisory Boards and Groups".

Attachment: New Members of the NCI Director's Consumer Liaison Group

Barbara LeStage is a five-year breast cancer survivor from Wrentham, Mass. She was 15 when her mother died of pancreatic cancer. In 1975 LeStage volunteered for the American Cancer Society (ACS) and began her lifelong service in advocacy. She has extensive advocacy background in health care and consumer issues. She has served on a Department of Defense Breast Cancer Research Panel, worked as a member of the Institutional Research Grant Review Committee at Massachusetts General Hospital, and is serving as a member of the Harvard Center for Cancer Prevention Advisory Board and the Joint Commission on Accreditation of Healthcare Organizations' Public Advisory Group on Health Care Quality. LeStage began her ACS activities in Massachusetts and served as chair of the board in 1991-1993. She became involved in ACS national committees in the 1980s and has chaired several national ACS committees. In November 1999 she received the ACS National Volunteer Leadership award. One of her accomplishments is persuading the ACS to include survivors on its National Research Council and all national research panels.

Pamela McAllister, Ph.D., is a seven-year survivor of a rare form of colon cancer. A resident of Fitchburg, Wis., she is chairperson of the Board of Directors of the Colorectal Cancer Network (CCN). McAllister is also a founding member of the Colon Cancer Alliance (CCA) and now serves as a science advisor, interacting with the scientific community on behalf of both the CCN and the CCA. She has served as the patient member of the NCI Colorectal Cancer Progress Review Group and the GI State-of-the-Science Symposium. As a leading colon cancer advocate, she interacts regularly with other patient advocates. She is a member of Patient Advocates in Research and co-owns and manages its listserv. McAllister brings the voice of the patient to two NCI cooperative groups – the Cancer and Leukemia Group B and the North Central Cancer Treatment Group, which conduct NCI-sponsored clinical trials – providing not only a patient perspective, but identifying ways to increase participation in clinical trials. McAllister is a patient representative to the Program for the Assessment of Clinical Cancer Test (PACCT) created by the NCI Cancer Diagnostics Program.

Henry Porterfield is an eight-year survivor of prostate cancer from Hinsdale, Ill. He is chair/CEO of US TOO! International Inc. and was a founding member of the National Prostate Cancer Coalition. Porterfield has served on NCI cooperative group committees, the Cancer Leadership Council and various NCI and NIH committees. He has developed cancer survivorship partnerships between US TOO! and the NCI, the Food and Drug Administration, the Veteran's Administration, and the Centers for Disease Control and Prevention. His strong interest in educating cancer patients, their families, and the larger community about prostate cancer resulted in the US TOO! Symposium Series, large seminars of up to a thousand people held throughout the United States. Under his leadership, US TOO! has expanded from 40 chapters to a nationwide group of nearly 500 units; another 100 groups serve thousands of men and their families in Australia, the United Kingdom, Canada and Europe. He also created US TOO Partners to serve the spouses of men with prostate cancer and has started programs to serve minorities and the underserved.

Nyrvah Richard, of New York City, was diagnosed with a rare form of ovarian cancer in 1996. She soon learned that, without health insurance, her treatment options were limited. After chemotherapy, she turned to SHARE: Self Help for Women with Breast or Ovarian Cancer, a New York City-based advocacy group. She became a volunteer for its hotline and served as a support group facilitator. One year later, Richard became an administrative and program assistant for SHARE's Ovarian Program; she recently became its director. She is active on SHARE's Project SOS (SHARE Ovarian Survivorship), a project to educate the medical profession about the issues a woman faces when diagnosed with ovarian cancer. She has also volunteered for the Harlem Breast Cancer Coalition's Sister-to-Sister Program, an effort to bring awareness and services to the minority populations who are either underserved or underinsured. Richard is very active in the community and is dedicated to serving the uninsured by raising ovarian cancer awareness and working for adequate care. She has testified at congressional hearings on disparities in the nation's quality of healthcare, and she represents SHARE as a member of the Executive Board at the Ovarian Cancer National Alliance.

When Paula Simper's father was diagnosed with pancreatic cancer in 1997, she immediately began her quest for information and treatment for this very difficult cancer. To her dismay she found little information about the disease, and no support groups. After her father's death, she connected online with others who had similar concerns about the lack of resources for patients with this disease and their caregivers. She turned the ensuing discussion and ideas into action and co-founded the Pancreatic Cancer Action Network Inc. (PanCAN.). Simper lives in Rancho Palos Verdes, Calif., and serves as the chairman and chief executive officer of PanCAN. She has a long list of service involvement with the Centinela Hospital Medical Center Trustees Associate Board, the National Cancer Legislative Advisory Committee, the Radiation Therapy Oncology Cooperative Group, and the NCI Pancreatic Cancer Progress Review Group. She is a collaborating partner in the National Dialogue on Cancer. Simper was instrumental in organizing an event that raised funds to establish an Early Detection Research Lab at Johns Hopkins Medical Institutions in Baltimore, Md. She developed the PanCAN Web site, an interactive source of information for pancreatic cancer patients and caregivers; created the PanCAN NEWS, an electronic newspaper; and co-authored "From Genes to Cure," a brochure that highlights and explains the relevance of basic science discoveries made by scientists at Johns Hopkins. In addition to early detection cancer research, Simper's interests include education, awareness, and increasing accrual of underrepresented groups to clinical trials.

For more information about cancer, visit NCI's Web site at http://www.cancer.gov.