FORCE advocates for families facing hereditary breast and ovarian cancer in areas such as access to care, research funding, insurance, and privacy.
Advocacy refers to any activity aimed at improving outcomes for a person or group. Health advocacy refers to work done by an organization to improve access to information and care, regulatory oversight, or research for a specific disease or population.
Cancer advocacy provides opportunities for people to become involved with cancer-related issues and to contribute their time and energy to help the community. Advocacy can involve passing out flyers at an event, giving a talk or writing an article about BRCA or cancer, sending a letter to elected officials asking them to support a new law, testifying on federal regulatory issues, serving on advisory committees, or providing input into the design and conducting of research studies. Advocates are often volunteers or staff of nonprofit organizations.
FORCE works with researchers, health care providers, government agencies, elected officials, foundations, nonprofit organizations, patients, and industry to improve the lives of people affected by hereditary cancer. FORCE trains people who want to volunteer and become more involved in HBOC advocacy work.
There are a number of options for becoming engaged.
Federal and state laws, regulations, and guidelines affect the health information and care that people receive, including the types of screening, prevention, and treatment that health insurance plans must cover, which laboratory tests or medications are available, and what screening services doctors should discuss with patients. As policies are considered, and as laws and regulations are interpreted, people can play a role in ensuring that the needs of those affected by hereditary breast and ovarian cancer are met. FORCE initiates and supports legislation and regulations that help people affected by hereditary breast and ovarian cancer.
If you are interested in becoming involved in legislative and regulatory advocacy, FORCE has a need for volunteers—especially in and around the Washington, DC area for in-person efforts. Check our Current Action Items for opportunities to speak out on topics on behalf of the HBOC community.
In the past, the only role for patients and non-scientists in the research process was to participate in research studies. Increasingly, researchers are recognizing the value of including input from the general population and patient communities being researched to weigh in on the shape and direction of research. Research advocates are non-scientists who are interested in guiding research priorities, making sure that the research is ethical and relevant, and even formulating which questions are most important in order to improve health outcomes. Many opportunities are available for consumers to participate on grant review panels, Institutional Review Boards (IRBs), Data and Safety Monitoring Boards (DSMBs), research advisory boards, and guideline panels. Research advocates help craft well-designed studies that lead to new and better methods to prevent, detect, and treat cancer and improve health outcomes.