The National Agenda for Ovarian Cancer
A Future of Hope for Every Woman
Every woman needs to know the symptoms
Every woman needs to be diagnosed earlier
Every woman with ovarian cancer needs to live a longer, better life
The Alliance's mission is to conquer ovarian cancer by uniting individuals and organizations in a national movement. This year, on our 10th anniversary, the Alliance is harnessing and directing the growing power and energy of survivors, advocates, committed scientists, physicians and other health care professionals, engaged federal agency leaders and concerned state and federal policy-makers to build a powerful, comprehensive strategy for change.
Photo by Duane Stork |
More than a decade ago, survivors began seeking out each other, one by one, to organize and build an ovarian cancer movement. Now an infrastructure of local, state, regional and national organizations is emerging.
Research is beginning to bear fruit. New treatments are increasing survival rates. A better understanding of the disease and risk factors is leading to new ventures to develop a screening tool. Pilot programs for improving education and increasing awareness have succeeded in their objectives. Now they must be ratcheted up and expanded nationwide. Policy formulation across many areas must occur to keep pace with the changes in research, practice and the growing demands of survivors.
While positive movement is occurring in the fight against ovarian cancer, it is not enough to significantly change the dire outcomes of this disease. The ovarian cancer community is not satisfied with the status quo. We are demanding that efforts be vastly accelerated to conquer this disease.
The Time Is Now
The National Agenda must:
- Establish and build consensus around a clear, measurable, prioritized and attainable 10-year plan of action to conquer ovarian cancer
- Mobilize individuals and organizations across the country on agenda priorities; and
- Reach priority agenda goals, measuring our progress as a community, on an annual basis.
The National Agenda will:
- Be a blueprint for the ovarian cancer community;
- Provide the umbrella under which individuals and groups can organize and act; and
- Serve as the vehicle to lead the ovarian cancer community into the next decade
Why do we need a National Agenda for Ovarian Cancer?
- To coalesce our individual and group activities into a cohesive movement
- To promote change through organized action
- To guide our actions and our demands
What do we want to change?
- That ovarian cancer is the deadliest gynecologic cancer and fifth leading cause of cancer deaths among women
- That annually 20,000 women will be diagnosed and 15,000 will lose their lives to this disease
- That 75 percent of women are diagnosed in late stages when the five-year survival is only 30 percent
- That symptoms are missed, dismissed, misdiagnosed or diagnosed too late
- That there is no effective early screening test
- That many women are not treated by a gynecologic oncologist
- That all health professionals do not know the symptoms of ovarian cancer
- That all women do not know they are at risk for ovarian cancer
- That there are inadequate resources devoted to research on ovarian cancer
- That more women are not aware of, referred to or participate in clinical trials
- That the incidence and mortality rates associated with ovarian cancer have not decreased
How do we develop a common vision to change this?
- Decide on common goals and objectives – while we may be in different organizations with different approaches, leadership and strategies, what common goals and objectives can we agree on?
- Decide what each of us as individuals and through our organizations can do to achieve our common goals and objectives
Goal #1: Advance Ovarian Cancer Research
Objectives
- At a minimum, double total federal funding devoted to ovarian cancer research over the next 10 years (currently estimated at $125 million annually)
- Encourage all large national nonprofit cancer research organizations to include ovarian cancer in their research portfolios
- Increase the enrollment of women in ovarian cancer clinical trials and decrease the time it takes to fully enroll in ovarian cancer clinical trials
Goal #2: Improve Healthcare Practice for Ovarian Cancer Across the Continuum of Care
Objectives
- Increase the number of women who are aware of risk factors and symptoms of ovarian cancer
- Improve the knowledge of risks and symptoms of ovarian cancer among health care practitioners
- Ensure that all women diagnosed with ovarian cancer receive timely and appropriate information about standard treatments, the role of gynecologic oncologists, survivorship plans, clinical trials, financial and insurance needs, and other resource information
Goal #3: Expand a National Advocacy Movement for Ovarian Cancer
Objectives
- Unite the growing number of organizations with a focus on ovarian cancer into a collaborative, coordinated national force for the common good
- Increase and train the number of ovarian cancer advocates to actively engage in the political process
- Develop and implement a legislative action agenda and an associated plan for each Congressional session
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Stakeholder Involvement
A dynamic, eight-month-long process captured the ideas and opinions of a broad range of individuals from the ovarian cancer community through four data collection methods:
In-Depth Interviews
- Leading scientists and researchers from the Alliance's Scientific and Medical Advisory Committee
- Representatives from public, private and nonprofit sectors
Focus Groups
- Members of national and regional ovarian cancer, gynecologic cancer, and broader cancer organizations
Web-Based Surveys
- Leaders of Alliance Partner Member organizations representing national, regional, state and local voices
- More than 1,200 survivors, including family and friends; more than 400 also told their personal stories
Literature Search
- Reviews of articles, studies, reports and laws on ovarian cancer research, health care practice and policy areas
Alliance Annual Conference
More than 250 individuals from a broad spectrum of individual, nonprofit, government and industry interests, reviewed the goals and objectives to prioritize and develop key action steps for the National Agenda.
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