As a thought leader in the HBOC community, FORCE has received consistent press coverage from major media outlets helping us spread life-saving awareness.
by Sue Friedman
For generations, people with a family history of certain diseases have feared they would follow in the footsteps of their afflicted relatives. In the last decade, research has shown that genetics plays a major role in the development of diseases such as cancer. Blood tests have been developed to identify gene changes that can predispose people to these diseases. Now that these tests are available, a population with a significant stake in cancer research is emerging: those who are at high risk for cancer due to a hereditary change in their DNA. As more disease-predisposing genes are found, this population will find itself at the forefront of predictive and preventive medicine.
The National Cancer Institute has set a challenge goal of eliminating cancer death and suffering by the year 2015. As a cancer survivor, I appreciate that attaining this goal will require investing funds in research to find a cure for this dreaded disease. But as a patient advocate for the community at increased risk for cancer—and a citizen concerned about rising health care costs— I recognize that we must also dedicate a substantial portion of research efforts to cancer prevention.
In order to increase our focus on cancer prevention, we must give the high-risk community of stakeholders a say in how cancer research funding is spent. Efforts have been made to address disparities faced by other special cancer populations, assuring their participation in setting funding priorities and enhancing their access to medical information, care and research. The high-risk community’s needs are as unique and as important as those of other special patient populations. Individuals predisposed to cancer face adverse conditions—a higher lifetime risk for cancer, a tendency for younger onset cancer, a higher likelihood for multiple cancers and a risk that can be inherited. This is a community that carries a larger cancer burden than the general population, and whose needs we are only beginning to understand.
Genetic testing makes it possible for us to identify more accurately those who might be at higher risk for cancer and to implement better strategies for lowering these risks. But predictive genetic testing has generated concerns that existing legislation, medical intervention and psychosocial support networks may not be adequate to assist this community in coping with knowledge of these risks.
Health care issues for the high-risk community are different than for those with a cancer diagnosis, and support networks that group high-risk patients with cancer patients are often inadequate in addressing these unique concerns. Legal issues, too, affect the health and wellbeing of high-risk individuals. Many avoid undergoing testing or participating in critical research because they fear employment or insurance discrimination. These individuals are often afraid to organize or speak out, thus further marginalizing the high-risk community.
With respect to hereditary breast and ovarian cancer syndrome, research has shown that certain medical interventions can greatly lower the risk for cancer; but the available options for risk reduction are far from ideal. In many instances, the most effective risk- lowering strategy involves surgically removing healthy breasts and/or ovaries before cancer develops. Although this is a huge improvement over waiting for the disease to strike and then attempting to treat it when it may be beyond cure, more research is needed to develop less drastic prevention strategies and reliable detection that catches cancer at its earliest and most treatable stages.
The NCI has its challenge. I issue my own: for policy-makers to pass legislation that removes the fear of discrimination based on genetic testing; for advocacy groups to rise above their agendas and include the high-risk community when drafting positions on cancer risk and prevention; and for those who know they are at high risk to become involved in advocacy and research and to develop a strong and united voice. Finally, I challenge government health agencies to bring cancer prevention to the forefront by creating an office to address the specific needs of this growing community of people who are at increased risk for cancer.
Together, we must recognize and validate this growing population as stakeholders with needs that are distinct from both the general population’s and the cancer survivorship community’s. Only then will we realize our true potential in reaching the NCI’s challenge goal by the year 2015.
Dr. Friedman is executive director of the organization FORCE: Facing Our Risk of Cancer Empowered and employed as a patient advocate at the H. Lee Moffitt Cancer Center, an NCI-designated comprehensive cancer center. She is serving a second 3-year volunteer appointment to the National Cancer Institute’s Consumer Advocates in Research and Related Activities (CARRA) Program.