For too long, health insurance coverage was out of reach for many women with ovarian cancer due to high costs and pre-existing condition limitations. This has started to change with the implementation of the Affordable Care Act, but much work remains to ensure all women have access to the quality, affordable health care they need.

We stand ready to work with Congress, the Administration and others in the community to increase access to health care and health insurance coverage and improve the nation’s health care system. We must ensure that the nation’s scarce resources are allocated equitably to ensure quality, evidence-based, outcomes driven, comprehensive care for all patients in need.

Recent Action

  • Joined other cancer patient organizations in supporting legislation including ensuring co-pays for oral chemotherapy drugs cost the same as other prescription drugs, supporting cancer care planning and ensuring a steady stream of cancer research funding.
  • Joined a letter urging that Medicare Part D plans not be allowed to limit access to six important classes of medication.
  • Sent a coalition letter from 16 cancer organizations regarding payment for quality care and drugs under Medicare.
  • Worked successfully with Medicare to ensure PET scans are covered for women with ovarian cancer.
  • Submitted comments to the FDA regarding drug shortages.
  • Submitted comments to the FDA regarding an alternative pathway for drug approvals.

Implementation of the Affordable Care Act

As insurance companies begin offering health insurance plans via the new exchanges, OCRFA is monitoring plans to ensure they provide adequate coverage for women with ovarian cancer and those at high risk of developing the disease. Specifically, we monitor access to preventative services, specialists, diagnostic tests, drugs and treatments, clinical trials and end of life care. We believe these are all essential health benefits and that any qualifying health care plan should offer a robust level of coverage for these services.

Recent action

  • In 2013, we joined 106 other organizations in a letter expressing concern about out-of-pocket costs for those enrolled in health plans through the exchanges.
  • Joined 55 other groups in support of mandatory access to clinical trials for all patients.
    Through patient coalitions, we have submitted comments to the Department of Health and Human Services regarding which benefits should be offered as part of all exchange health insurance plans.

Medicaid Expansion

OCRFA strongly supports Medicaid Expansion in states that have already expanded their programs and advocates for expansion in states that have not. Medicaid provides health insurance to many low-income individuals who would not have access to much needed care otherwise.

The Affordable Care Act significantly expanded the number of people eligible for Medicaid, as well as federal funding of Medicaid. Under the law, anyone earning up to 138 percent of the federal poverty line ($16,242 for an individual and $33,465 for a family of four in 2015) would qualify if living in a state that chose to expand their Medicaid program. However, the Supreme Court ruled in National Federation of Independent Business v. Sebelius that states could decide whether they wanted to expand their programs. States that chose to expand would get significant financial help from the federal government to do so: the federal government will reimburse 100 percent of states’ Medicaid costs until 2016, and 90 percent of states’ costs until 2020.

As of October 2015, 31 states and the District of Columbia had expanded their Medicaid programs, providing coverage to many low-income people who could likely not afford coverage otherwise. OCRFA supports outreach efforts in those states that have not yet expanded Medicaid and those states which are considering expansion.

For more information on Medicaid expansion, its impact on your state and ways to get involved, please visit

Recent Action

  • Worked with the National Patient Advocate Foundation (NPAF) to develop the website and its materials.

Access to Genetic Testing, Genetic Counseling and Prophylactic Surgery

We believe that all health care plans should provide ready and affordable access to services proven to prevent ovarian cancer. Under the Affordable Care Act, all health insurance plans must cover BRCA testing and genetic counseling for women with a family history of breast and ovarian cancer at no out-of-pocket cost to the patient. We believe these benefits should be further extended to women with a prior diagnosis of breast or ovarian cancer, as it will better inform their decisions about having prophylactic surgery to prevent a second cancer.

The Affordable Care Act did not include the same access to genetic testing and counseling for women who may have a family history of Lynch Syndrome, a heritable cancer syndrome that predisposes women to developing a number of cancers, including ovarian. We believe that those suffering from – or suspected of suffering from – Lynch Syndrome should have the same access to testing and genetic counseling as suspected BRCA mutation carriers.

We further believe that health insurance plans should be required to cover increased surveillance and prophylactic salpingo-oophorectomy surgeries for any woman carrying a genetic mutation predisposing her to developing ovarian cancer. Prophylactic surgery has been proven to substantially reduce a woman’s chances of developing or dying from ovarian cancer.

Recent Action

Patient-Centered Care

We believe the health care system must be focused on patient care and patient quality of life. Physician reimbursement and payment policies should not be the driving factors in health care decision-making; care choices should be evidence-based, promote patient quality of life and be made in concert with the patient and her family.

Recent Action

Worked with patient coalitions to provide comments on the Patient Centered Outcomes Research Institute’s research agenda.