This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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An Advocacy Win for Cancer Survivors Facing HBOC

June 2, 2015


We frequently mobilize our community to challenge health policy barriers to medical care. It’s always gratifying when we are able to report wins, when FORCE organized and amplified your voices to affect positive change.

Clarification of guidelines paves the way for eligible cancer survivors to receive BRCA counseling and testing at no cost

Guidelines published by the U.S. Preventive Services Task Force (USPSTF) are used to determine which patients are eligible for insurance coverage of preventive services with no out-of-pocket costs. The USPSTF “Risk Assessment, Genetic Counseling, and Genetic Testing for BRCA-Related Cancer in Women” guidelines, which were published in December 2013, were initially interpreted to apply only to women who have a family cancer history but who have never been diagnosed with cancer. When the USPSTF revealed their draft of the guidelines, we voiced our concern that they left many gaps in access to care. FORCE took action by posting a petition pointing out that the guidelines were unfair to cancer survivors and would cost lives. When the guidelines were finalized in December, the gaps remained. Despite the setback, we didn’t give up and continued to work closely with government agencies to find paths for closing the loopholes and improving access.

After 18 months of efforts, one of our concerns has finally been addressed. Last month, the Center for Consumer Information and Insurance Oversight (CCIIO), the agency that implements portions of the Affordable Care Act, responded; publishing a clarification of the USPSTF guidelines on genetic counseling and testing for BRCA. CCIIO indicated that the guidelines also apply to asymptomatic women who have been diagnosed with “breast, ovarian, or other cancers.”

The CCIIO clarified that primary care providers should screen those who have had cancer to determine if their family health history is suggestive of a BRCA mutation, including history of breast, ovarian, fallopian tube, or peritoneal cancer, saying that this population “…should receive genetic counseling and, if indicated after counseling, BRCA testing.”

FORCE commends the CCIIO for making this important clarification and ensuring that women who have had cancer receive the same preventive services as their unaffected peers. FORCE is hopeful that insurers will implement this interpretation of the guidelines immediately, providing survivors with much-needed access to life-saving genetic services with no out-of-pocket cost.

This development demonstrates that progress for our community can become reality when we unite and raise our voices together. FORCE is proud of our leadership in this area of health policy for the HBOC community; we participated in the ACLU lawsuit that led to the overturning of gene patents. Since then, as we had anticipated, the cost of BRCA testing has decrease dramatically. But there are still many people for whom the cost of testing is a barrier and many gaps still remain. The guidelines still do not cover any risk-management interventions, such as surgery or breast MRI; nor do they address people with a family history that is consistent with Lynch Syndrome (genetic mutations associated with colon, ovarian, and uterine cancer), they don’t apply to women with active cancer, and they do not apply to men. We will continue our efforts until all people who would benefit from hereditary cancer genetic counseling, testing, and medical care have access to the health services they need. To this end, we are following another exciting development; new draft policies have been proposed that would provide unprecedented access to genetic counseling and BRCA testing through Medicare. Public commentary will be due in July. Stay tuned as we will soon be preparing and circulating a sign-on letter.

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  1. Kate S. says:

    Thank you Sue and everyone at FORCE – you are heroes!

  2. Karen Hartman says:

    Thanks so much for all you do. Clarify something, though. I am on Medicare, just had the breast cancer marker blood test and now have to pay a hefty copay. How does this new law apply to me. I am BRCA1 positive, am a survivor with some potential new drama. Thanks.

  3. Renee Chase says:

    Hello. I am a BRCA carrier, as is my daughter. I would like to have my son tested. Is this possible without the great cost?

    • Sue Friedman says:

      Hi Renee,
      The ability for your son to test will depend on a few factors including his insurance. Genetic testing costs have gone down considerably so it wouldn’t necessarily be expensive for him to test. Has he seen a genetic counselor yet?

      Unfortunately the laws that apply to genetic counseling and testing with no out-of-pocket costs do not extend to men yet, so we still have a lot of work to do.

      If you email me at: I would be happy to talk with you and see if I can help assist you and your son.

  4. Jen says:

    Is the coverage still limited to ASYMPTOMATIC women? If my mom is stage IV and I want to know her BRCA status, it seems like Medicare still won’t cover.

    But Medicare and all insurers need to get their heads together to reduce overall costs. The current system provides 100% coverage to at-risk women, but won’t cover testing of the affected family member if they are asymptomatic! Imagine: A symptomatic mom (who was never tested for BRCA – common years ago) with 4 daughters. Insurers must pay $16K to test the daughters for BRCA, but nobody will cover mom’s testing! All the daughters test negative. Insurers just paid $16K to find out essentially nothing that will guide the care of the daughters. $4k to test mom would have provided the cheapest answer.

    • Sue Friedman says:

      Hi Jen,
      The USPSTF specifies asymptomatic, but I think that word can be open to interpretation. We agree that the approach to genetics services coverage is so piecemeal and really doesn’t take into account how to assure the best health outcomes for the most people.

      I would think that Medicare might cover testing for your mom. Has she tried to get testing through Medicare? We are working on a survey to assess the coverage gaps remaining for people trying to access genetic counseling, testing and preventive services.

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