Press Release: Cancer Groups Praise Coverage of Genetic Counseling and Testing Under Affordable Care Act, Urge Coverage of Other Vital Services

For immediate release: February 28, 2013

Washington, DC—The federal government recently released regulations that clarify which preventive services will be covered under the Affordable Care Act without cost sharing for patients enrolled in private insurance plans. Preventive services are provided without cost sharing to people enrolled in private plans that were established after August 1, 2012. Insurance plans under the Affordable Care Act cannot apply a co-pay or deductible to services outlined in the act.

Among the services included in these regulations are genetic counseling and testing for inherited breast and ovarian cancer risk in women with a family history of cancer. Breast and ovarian cancers have been linked to mutations in the BRCA1 and BRCA2 genes.

The Ovarian Cancer National Alliance, FORCE, Bright Pink and CCARE Lynch Syndrome applaud the government’s attention to women’s health services in general and preventive services in particular. We are happy that genetic counseling and genetic testing will be covered without cost-sharing, as these are important services for women who may have an increased risk of ovarian and breast cancers. The new regulations are a step in the right direction, but they have only taken us halfway there. We are concerned that the current regulations do not include the following:

  • genetic counseling or testing in people with a family history indicative of Lynch Syndrome (which is associated with colon, uterine, and ovarian cancer) or other hereditary cancer syndromes;
  • genetic counseling and testing for women who have already been diagnosed with cancer;
  • risk-management services such as increased surveillance and prophylactic surgery which has been proven to reduce the risk for developing cancer and the risk of dying in high-risk women; and
  • genetic counseling and testing in men.

As organizations representing thousands of women and families who have or are at risk of developing hereditary cancer, we will continue to work with appropriate government agencies to ensure coverage of evidence-based services that reduce people’s risk for cancer.

The preventive services covered under the Affordable Care Act are based on recommendations from the United States Preventive Services Task Force and include women with the following risk factors:

  • Ashkenazi Jewish women with one first degree relative or two second degree relatives on the same side of the family with breast or ovarian cancer
  • Non-Ashkenazi Jewish women who have:
    • two first-degree relatives who had breast cancer; at least one of these two were diagnosed before age 50;
    • three or more first- or second-degree relatives with breast cancer regardless of age at diagnosis;
    • a combination of both breast and ovarian cancer among first- and second-degree relatives;
    • a first-degree relative with bilateral breast cancer;
    • a combination of two or more first- or second- degree relatives with ovarian cancer, regardless of age at diagnosis;
    • a first- or second- degree relative with both breast and ovarian cancer at any age; or
    • a history of breast cancer in a male relative

These guidelines are based on USPSTF’s Genetic Risk Assessment and BRCA Mutation Testing for Breast and Ovarian Cancer Susceptibility recommendations released in 2005. The USPSTF is currently reviewing these guidelines. Revisions in the guidelines could impact preventive services covered by the Affordable Care Act and services available to Medicare beneficiaries.

Women with breast cancer diagnosed at age 50 or younger or ovarian cancer at any age meet expert guidelines for genetic counseling but this service is not specifically covered under the Affordable Care Act.

People who are concerned that the cancer in their family could be hereditary should consult with a qualified genetics professional prior to proceeding with genetic testing for cancer risk.

About the Alliance: The Ovarian Cancer National Alliance is the foremost advocate for women with ovarian cancer in the United States. To advance the interests of women with ovarian cancer, the organization advocates at a national level for increases in research funding for the development of an early detection test, improved health care practices, and life-saving treatment protocols. The Ovarian Cancer National Alliance educates health care professionals and raises public awareness of the risks and symptoms of ovarian cancer. The Ovarian Cancer National Alliance is a 501 (c) (3) organization established in 1997. For more information, or to schedule an interview, please contact Amanda Davis at adavis@ovariancancer.org or (202)331-1332.

About FORCE: No one should have to face hereditary breast and ovarian cancer alone. For more than 13 years, FORCE has been the voice of the hereditary breast and ovarian cancer community. FORCE provides support, education and awareness to help those facing hereditary breast and ovarian cancer know their healthcare options and make informed decisions. The organization is the de facto leader in guiding critical research and policy issues that impact the hereditary breast cancer and ovarian cancer community.  For more information about FORCE and hereditary breast and ovarian cancer, please visit www.facingourrisk.org.

About Bright Pink: Bright Pink is a national non-profit organization focusing on the prevention and early detection of breast and ovarian cancer in young women while providing support for high-risk individuals. Our innovative education and support initiatives inform young women about their lifetime breast/ovarian cancer risk, help them develop a prevention/early detection strategy based upon risk and offer support and a sense of community to women who are at high-risk for these diseases. Visit BrightPink.org for information about our educational and support programs and resources for young high-risk women.

About CCARE Lynch Syndrome: Leading the fight against Lynch syndrome through education, advocacy and research. Lynch syndrome is the second most common genetic cause of ovarian cancer, and the most common genetic cause of uterine and colon cancers. Our national non-profit is dedicated to saving lives by increasing Lynch syndrome awareness among health care professionals and the general public.

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