Ovarian Cancer: A Call for State Action is the first report to rank each state on the opportunities it provides for the provision of quality care to women with this disease. As such, it provides a baseline that we hope will inspire advocates and policymakers to take action to improve care for women who have or are at risk of developing ovarian cancer. As the fifth leading cause of cancer deaths for women, we cannot afford to maintain the status quo on ovarian cancer.
No state offers an optimal environment for care for women with ovarian cancer, but our research uncovered many beneficial laws and programs implemented by the states. This section offers an overall approach to change. We have included targeted recommendations for state and federal policymakers and for advocates, as well as sample legislation that will lead to improved care for women with ovarian cancer. Although our focus is on ovarian cancer, many of our recommendations will improve care for all women and men facing the challenges of serious illnesses.
We encourage legislators and advocates to contact the Alliance at firstname.lastname@example.org or (202) 331-1332 for assistance implementing these recommendations. Together, we can save lives.
State policymakers have the greatest power to address weaknesses identified in Ovarian Cancer: A Call for State Action. For example, the legislature can pass or improve laws related to insurance coverage or genetic discrimination. Individual legislators can raise awareness of ovarian cancer by taking actions like those encouraged through the United States of Teal campaign. Governors and state agencies can issue regulations to improve access to genetic counseling, and revise state cancer plans so they are up-to-date and include provisions relevant to ovarian cancer.
This report includes sample laws from states all around the country that address issues affecting quality care for women with ovarian cancer. These laws serve as a starting point for states to take action on topics like genetic discrimination, insurance reform and license plates that fund ovarian cancer programs. We welcome the opportunity to work with legislators, governors, insurance commissioners and any other state policymakers who are interested in implementing these or other laws around ovarian cancer.
The Alliance has partnered with Departments of Health in several states to facilitate awareness and implementation of the Survivors Teaching Students: Saving Women’s Lives® Program. The Alliance welcomes any inquiries from state Departments of Health regarding this program, which is offered free of charge to medical and nursing schools.
The individual state profiles included in this report highlight specific recommendations based on our analysis of the state’s strengths and weaknesses in facilitating quality care for ovarian cancer. We urge state policymakers to work with their constituents to determine priorities for the local ovarian cancer community. Existing ovarian cancer groups, including Partner Members of the Alliance, can be a valuable source of insight for state legislators.
Advocates provide critical momentum for state and federal policy changes. Ovarian cancer survivors, caregivers, health providers and members of professional societies can all speak knowledgably about the need to improve quality care for women with this disease. The Alliance is available to assist advocates who are inspired by Ovarian Cancer: A Call for State Action and want to encourage new laws, regulations and policies in their state.
Based on the ranking of each state, as well as local priorities, advocates can work with legislators and other state policymakers to change laws and policies. We have included a packet of sample legislation which advocates can use to help legislators introduce and champion insurance reform or other efforts. Depending upon the priorities in a given state, advocates may want to work in coalitions—a critical tool for organizing around a specific issue. For example, if a law related to genetic discrimination is a priority, other groups of people with genetically-linked disease may share similar goals; if laws about parity for oral and intravenous chemotherapy are a priority, reaching out to other cancer groups in the state can reinforce advocates’ efforts.
Advocates can also urge state legislators to take actions like those encouraged by the United States of Teal campaign, which helped state legislators raise awareness of ovarian cancer. Legislators can help educate the public about this disease by reading a floor statement about ovarian cancer, submitting a letter to the editor or wearing teal—the color of ovarian cancer awareness.
Established ovarian cancer groups may be helpful to individuals who want to start a state-wide advocacy campaign. Advocates can check the Alliance website to find a Partner Member group in their state. Many of the Alliance’s Partner Members provide advocacy opportunities for those touched by ovarian cancer. For advocates living in one of the 12 states with no support groups for women with ovarian cancer, or whose local cancer group does not engage in advocacy, the Alliance can help individuals start a Partner Member.
Ovarian cancer support groups have numerous ways to educate the public about this disease, including fundraisers, awareness walks and health fairs. Educating health providers is another important role for support groups. We encourage advocates to speak with frontline doctors about the need to appropriately refer women suspected of having ovarian cancer to gynecologic oncologists. Survivors who wish to educate medical and nursing students may contact the Alliance about joining the Survivors Teaching Students® program.
To stay informed about developments in ovarian cancer research and policy, we encourage advocates to sign up for emails from the Alliance. We send messages about once a week, including news updates and policy alerts. Our annual advocacy day in Washington, DC, gives advocates an opportunity to speak with federal legislators about the impact ovarian cancer has on women and their families.
While this report focuses primarily on the states, the role of the federal government cannot be overlooked in any discussion about quality care for women with ovarian cancer. Through investments, policies and programs that support women with this disease, federal policymakers can provide an example to the states and encourage legislative change. In this section, we detail some ways the federal government already supports women with ovarian cancer, and suggest further activities. The Alliance welcomes opportunities to work with Congress, the White House and federal agencies to strengthen our nation’s efforts to reduce suffering from ovarian cancer.
Access to Care
The Affordable Care Act (ACA) contains a number of provisions that benefit women with ovarian cancer, including: expanded access to clinical trials for individuals insured under private or commercial insurance plans; annual and life-time caps on individual expenses; and coverage of women’s preventive health services (including oral contraceptives, which are known to reduce a woman’s risk of developing the disease). We urge full funding and implementation of these important provisions.
One federal law that affects access to care in the states is the Employee Retirement Income Security Act (ERISA), which governs how private sector health insurance plans operate. As a result of this law, many health plans fall outside state jurisdiction. ERISA also affects women’s ability to access a gynecologist without a referral. We urge Congress to enact a policy (such as H.R. 2746, the Cancer Drug Coverage Parity Act of 2011) that would assure parity in oral and infused chemotherapy for all individuals covered by private insurance plans.
Many women diagnosed with ovarian cancer are over age 65. As such, Medicare coverage and reimbursement policy has a direct impact on the health, wellbeing, and potential outcomes for women with ovarian cancer. We urge Congress, the Administration, and the Centers for Medicare and Medicaid Services (CMS), to ensure adequate Medicare coverage for blood marker testing, imaging, surgery, chemotherapy and other ovarian cancer care.
Education and Awareness
The Centers for Disease Control and Prevention (CDC) play an important role in educating providers and the public about ovarian cancer. Johanna’s Law: The Gynecologic Cancer Education and Awareness Act of 2010 authorizes the CDC to conduct an awareness campaign regarding the signs and symptoms of gynecologic cancers, including ovarian cancer. Unfortunately, Johanna’s Law did not receive funding in fiscal year 2011, though funding was restored for fiscal year 2012. We urge Congress to continue providing dedicated funding for ovarian cancer educational programs aimed at health providers and the general public.
In addition to public education, the CDC provides important seed money, structure and support to states to draft and implement their cancer plans. We hope federal policymakers will urge the states to update their cancer plans and include information specific to ovarian cancer.
Several existing federal programs for breast or cervical cancer could be expanded to include information about ovarian cancer. The intent of the Education and Awareness Requires Learning Young (EARLY) Act, part of the ACA, is to make women of all ages aware of their risk of breast cancer. Given the association between breast and ovarian cancers, we urge the CDC to integrate messages regarding a woman’s risk of ovarian cancer into educational campaigns funded by the EARLY Act.
Quality of Life
The ACA contains several provisions relating to pain care management and hospice care, including a new Medicare program to improve the quality of hospice care, and a study examining whether or not the elimination of the “dichotomy” between curative and palliative care will improve patient care and quality of life. We believe these programs will be beneficial to women with ovarian cancer.
Many of the strategies outlined in the CDC’s National Action Plan for Cancer Survivorship could improve quality care for the 170,000 ovarian cancer survivors in the United States. Examples include continuing medical education programs on cancer survivorship, partnering with advocacy groups and establishing clinical guidelines for each stage of cancer survivorship.
As noted elsewhere in this report, research is critical to reducing ovarian cancer incidence, morbidity and mortality. While the private sector plays an essential role in research, the federal government is equally essential: federal funding accounts for 90 percent of all nonprofit ovarian cancer research conducted in the United States. We urge Congress to maintain its commitment to, and make adequate investments in, the National Cancer Institute and the National Institutes of Health, the Department of Defense Ovarian Cancer Research Program and the CDC’s Ovarian Cancer Control Initiative.
Ovarian Cancer: A Call for State Action is the first report to analyze state environments related to ovarian cancer. We found that all states had areas of weakness, but that there are attainable solutions to address these problems that will benefit the wider population—not just women with ovarian cancer. We believe this report can be a step forward for policymakers and advocates, who will have a clear picture of the landscape and a set of recommendations for action.
Our intent has always been to make this report a constructive exercise. We have included sample laws and some guidance for those who want to improve their state’s environment for women with ovarian cancer. Even our highest-ranking states have room for improvement.
Because this is the first report card examining the ways in which states help women with ovarian cancer access quality care, we looked at a limited number of elements that describe quality care for these women. We encountered gaps and other limitations in some of our data and welcome your feedback for future iterations of this report.
Ovarian cancer has taken a toll on too many of us, whether through ourselves or our mothers, grandmothers, sisters, daughters and friends. The recommendations contained in this report card are one step to reducing the heavy burden of this deadly disease. As this report shows, states can—and do—affect quality care for women with ovarian cancer. We welcome the opportunity to work with any advocates or policymakers to help implement relevant recommendations and improve the lives of women with ovarian cancer.