108th Congress

Consumer Involvement in Breast Cancer Research Act

S. 415

Background

Scientists, medical experts, and advocates work together to help shape the National Cancer Institute’s (NCI) policies and programs through a number of standing and ad hoc advisory groups. The National Cancer Advisory Board (NCAB) provides overall guidance to NCI and a final assessment of the research proposals selected for funding through peer review. There is a long history of appointing breast cancer advocates to NCAB. This community is currently represented on NCAB by a breast cancer survivor and a world-renowned breast cancer surgeon, researcher, and patient advocate. Two additional medical experts on breast cancer also serve as effective champions for these patients.

The Board of Scientific Counselors evaluates the progress, performance, and productivity of the Institute’s intramural research programs and scientists through regular site visits to NCI. The Board of Scientific Advisors (BSA) plays a similar role for NCI’s extramural program, reviewing the progress of ongoing programs and providing feedback on proposed new research activities. The Executive Director of the National Alliance of Breast Cancer Organizations was a charter member of BSA. NCI regularly convenes Progress Review Groups of scientific and medical experts and advocates to examine the research needs of and opportunities related to specific types of cancer. NCI is also strongly influenced by the President’s Cancer Panel. This Panel and other advisory groups provide a seasoned assessment of the progress of and problems related to the Nation’s effort to reduce the burden of cancer.

In addition to their membership on other NCI advisory groups, advocates advise the Director of NCI on broad programmatic and research priorities through the Director’s Consumer Liaison Group, an all-consumer advisory committee whose members provide advice to the Director on a number of specific program areas, including cancer communications, survivorship, and science planning. Advocates representing various types of cancer, including breast cancer, serve on these advisory groups for terms of 3–6 years, depending on the committee. NCI has made use of consumer advocates in the NCI peer-review setting for more than 5 years, ensuring that patient-oriented research proposals (i.e., grant applications) benefit from the input of the advocacy community. Advocates are represented as full voting members, both on ad hoc and chartered peer-review groups that review such applications, and NCI has designed specific orientation materials, definitions, and acronym guides to demystify the process and involve advocates in meaningful ways in the assessment of these applications.

NCI also solicits the advice of patients and their families through the recently created Consumer Advocates in Research and Related Activities (CARRA) program. Through this program, more than 200 individuals serve as a “ready and waiting” group who are available to participate in a wide range of NCI activities. For example, they participate in advisory groups with basic and clinical researchers to help assess research needs for specific cancers, provide advice on the design of clinical trials, and review education materials developed by NCI. A substantial number (currently about one-fifth) of the volunteer members of the CARRA program have publicly acknowledged expertise and experience that is directly relevant to breast cancer patients, breast cancer research, and breast cancer education and communications issues. The expertise and experience of CARRA members are also acknowledged by NCI staff, who regularly include them in the development and review of breast cancer-related research funding initiatives.

Provisions of the Legislation/Impact on NIH

S. 415 would have amended Section 417(c) of the Public Health Service Act to require the Director of NCI, to the extent practicable, to increase the involvement of advocates in decisionmaking on breast cancer research. The Director of NCI would have been required to submit a report accompanying the biennial report on the progress of this directive 1 year after its enactment. The bill defined “advocate” as “an individual who is accountable to, represents, and reports back to organizations that represent those affected by breast cancer.”

Status and Outlook

S. 415, the Consumer Involvement in Breast Cancer Research Act, was introduced by Senator Olympia J. Snowe (R-ME) on February 14, 2003, and was referred to the Senate Committee on Health, Education, Labor and Pensions. No further action occurred on this legislation during the 108th Congress.