Beth Ahabah Voices: Roberta Opper: Why I Became a Breast Cancer Research Advocate
April 18, 2017
by Roberta Opper
We all know the grim statistics—each year approximately 250,000 American women and men are diagnosed with invasive breast cancer and about 40,000 die. Since my breast cancer diagnosis 25 years ago, I have spent an enormous amount of time learning as much as I can about the disease, in an attempt to stay healthy. I have attended seminars, retreats and studied relevant websites and journals.
Since I retired two years ago, I have been trying to identify the right fit in terms of volunteer endeavors. After a 40-year career as a health care social worker, and with my personal history of breast cancer, it seemed as if health-related research would be a good use of my experience and skills. I wanted to join the effort to lower breast cancer mortality rates and eradicate the disease.
Recently I had the opportunity to serve as a Consumer Reviewer for the Breast Cancer Research Program (BCRP) sponsored by the United States Department of Defense. This grant program started in 1992 when Congress, responding to the lobbying efforts of breast cancer advocates, allocated funds to the Department of Defense to conduct research toward finding a cure. The initial allocation was 120 million dollars, and has remained approximately at this level for the past 25 years.
One of the unique aspects of this program is a partnership between scientists and consumers in the scientific peer review process. “Consumers” are considered to be those who have been personally affected by the illness, or their family members or caregivers or those at high risk for the disease. To be appointed a Consumer Reviewer, I needed to submit a personal statement of why I wished to fill this role, a professional resume and an endorsement by a breast cancer advocacy organization. Once these documents were accepted by the BCRP, I was interviewed by an administrator of the program, and was formally approved as a Consumer Reviewer.
Scientist Reviewers, who are cancer researchers and clinicians, and Consumer Reviewers meet in person periodically throughout the year to review and discuss research proposals. Prior to the most recent scientific panel meetings, which took place in January, each reviewer critiqued ten research applications submitted by investigators from medical schools throughout the country. To fulfill this assignment, I had to relearn concepts such as proteins, amino acids, and molecules, which I had not studied since high school chemistry! But, with patience (and the help of a medical dictionary), I was able to interpret and critique the proposals under consideration.
In order to qualify for funding, a proposal was required to address one of the BCRP’s “Overarching Challenges.” These are:
- Identify determinants of breast cancer initiation, risk, or susceptibility
- Conquer the problems of overdiagnosis and overtreatment
- Identify what drives breast cancer growth and determine how to stop it
- Identify why some breast cancers become metastatic and eliminate mortality associated with metastasis
- Determine why/how breast cancer cells lie dormant for years and then recur
- Revolutionize treatment regimens by replacing them with ones that are more effective and less toxic
The research proposals submitted included studies related to prevention, detection, diagnosis, risk management and treatment of breast cancer. Each reviewer assigned a numerical score to specific aspects of each proposal. These included research design, qualifications of the investigators, laboratory environment, budget and impact on the breast cancer community. As Consumer Reviewers, our primary focus was on the impact aspect of the proposal. Our written critiques and corresponding scores centered on questions such as:
- What subset of patients (triple negative, hormone positive, BRCA positive, etc) would benefit from the outcome of the research?
- Is the toxicity of the proposed new drug agent or procedure/treatment lower than currently available treatments?
- How will the goals of the proposal impact length of life and quality of life for survivors?
- Is the proposed study an innovative advancement in the fight against breast cancer or just an incremental next step to previous research?
- Are the needs of those with rare mutations being addressed, as these patients are sometimes left behind by funding sources because of small numbers?
After completing the written critiques of the proposals assigned to me, I traveled from Tucson, Arizona, where Peter and I were spending the winter, to Washington, D.C. to meet with the panel. During the meeting, 10 different review panels convened, each focusing on a different aspect of breast cancer research. My panel was composed of 12 Scientist Reviewers and four Consumer Reviewers. As Consumer Reviewers, we were full voting members of the panel and our views were solicited on the merits or pitfalls of the proposed research particularly with respect to impact on survivors. At the conclusion of the panel meetings, we determined which studies merited progression to the next level of review for eventual funding.
The panel discussions were spirited, relevant and fascinating and I felt honored to be part of this effort. I expect to continue to serve as a Consumer Reviewer whenever my participation is requested. The Department of Defense provides grants for other diseases and conditions under the umbrella of the Office of the Congressionally Directly Medical Research Programs. These include other cancers (lung, ovary and prostate), neurological conditions (Parkinson’s, ALS and multiple sclerosis), traumatic brain injury and spinal cord injury. The Department of Defense is actively recruiting Consumer Reviewers for these research programs. Anyone interested in becoming a Consumer Reviewer can find the complete list of programs and more information at www.cdmrp.army.mil.
“Voices” is a series written by and about the members of Beth Ahabah. If you would like to submit an article about a friend or family member at Beth Ahabah, or your own adventures, avocations or interesting career, please contact Lori Allen in the Temple office at email@example.com.