Ovarian Cancer Program Overview
Bureau of Chronic Disease Services
New York State's Ovarian Cancer Program was created as a result of grass roots advocacy over a decade ago. Enabling legislation established a program within the NYS Department of Health (NYSDOH) to provide information to the public, patients and health care providers about ovarian cancer, including its signs and symptoms, risk factors, and the benefits of early detection and appropriate treatment.
An Advisory Council, comprised of consumers and providers, was also established. This group meets several times a year to review publications produced by the program, provide technical assistance to grant funded projects, and advise NYSDOH on issues such as the readiness of new testing modalities for widespread use. The panel represents gynecologic oncologists, oncology nurses, managed care, survivors and family members.
Since its inception, the Ovarian Cancer Program has operated under the assumption that ovarian cancer is NOT a silent killer and has worked to broadcast that public health message to all audiences. Materials have been developed and distributed to educate women and their providers about the signs, symptoms and risk factors associated with ovarian cancer. The ultimate goal is to demonstrate an increase in early stage diagnosis and a reduction in deaths due to ovarian cancer in New York State.
A number of projects approach the problem of ovarian cancer from different angles. A cornerstone of the program is the two NYS ovarian cancer quilts. Both quilts celebrate survivors and commemorate women who have died of the disease. Quilters are invited to send a brief biographical sketch of the woman they are honoring; these stories are circulated along with the quilts. The quilts have traveled around the state to hospitals, health fairs, quilt shows, department stores, colleges, and many other venues. The first quilt was completed in 1999 and is featured in a poster (in English and Spanish) captioned "NYS Cares About Ovarian Cancer". The poster was mailed to thousands of primary care providers throughout the state, accompanied by a letter from the NYS Commissioner of Health describing signs and symptoms and encouraging vigilance.
The NYSDOH also has published English and Spanish versions of a brochure for the general public, "Ovarian Cancer: What You Need to Know", that describes risk factors and symptoms of the disease.
An "Ovarian Cancer Education and Awareness Initiative" was announced in 2003. The initiative provides more than $270,000 in funding for 14 projects around the state.
These diverse projects educate women and primary care providers about ovarian cancer. They also identify high-risk and underserved populations in their catchment areas and reach out to Amish, Ashkenazi Jewish, Asian, Hispanic, Native American, lesbian, rural and older women residing in nursing homes. The projects are based in tertiary care hospitals, community health centers, local health departments, educational institutions and community-based agencies and offer services in 42 of New York's 67 counties.
The projects have just entered their second year of funding, with funding of less than $20,000 each. They have sponsored seminars for health professionals, produced public service announcements for television and radio, participated in health fairs, and presented educational information at community events. One innovative project allows survivors to relate their personal stories to third-year residents in nearly all of the medical schools in the state.
The NYSDOH Ovarian Cancer Program, partnering with the Center for Health Workforce Studies at SUNY Albany School of Public Health is conducting research on workforce and access issues relating to ovarian cancer. Based on data demonstrating that surgery performed by a gynecologic oncologist results in better outcomes for women with ovarian cancer, the approximately 80 gynecologic oncologists currently practicing in NYS will be surveyed to examine the knowledge, attitudes and referral patterns of primary care providers. Another component will review health plans' protocols relating to referral to specialists for ovarian cancer diagnosis and treatment.
For more information, contact: Karen Greendale, MA, CGC, Director, Ovarian Cancer Program at (518) 474-1222 or kxg03@health.state.ny.us.
