Demand Insurance Coverage for Breast Cancer Genetic Marker Testing

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Sponsor: The Breast Cancer Site

We must have legislation requiring insurance companies to provide coverage for BRCA gene mutation testing.

About 13% of women in the general population will develop breast cancer sometime during their lives1. By contrast, 55%-72% of women who inherit a harmful BRCA1 variant and 45%-69% of women who inherit a harmful BRCA2 variant will develop breast cancer by 70-80 years of age2.

For these women, a positive genetic mutation test result can bring relief from uncertainty and allow them to make informed decisions about their future, including taking steps to reduce their cancer risk.

The problem is, not everyone has easy access to genetic testing. Insurance policies often maintain that only about 5%-10% of all cancers are considered hereditary, even though Ashkenazi Jewish heritage actually have a higher risk of carrying a BCRA variant3. This reduces the amount insurance companies have to pay for their customers' genetic testing services. It also puts more women at risk.

In 1988, the U.S. Congress passed the Clinical Laboratory Improvement Amendments (CLIA) to ensure quality standards and the accuracy and reliability of results across all testing laboratories4. The 2008 Genetic Information Nondiscrimination Act (GINA) meanwhile protects against discrimination by health insurance plans based on an individual's genetic information5.

Human life is not an overhead expense meant to be minimized. Insurance companies should not have the right to decide who gets funded for testing. Sign the petition and demand the Secretary of the Department of Health and Human Services adopt legislation requiring insurance companies to cover genetic counseling and testing for the BRCA1 and BRCA2 mutations.

More on this issue:

  1. U.S. Department of Health and Human Services, National Institutes of Health, National Cancer Institute (15 April 2020), "SEER Cancer Statistics Review (CSR) 1975-2017."
  2. A Antoniou, P D P Pharoah, S Narod, H A Risch, J E Eyfjord, J L Hopper, N Loman, H Olsson, O Johannsson, A Borg, B Pasini, P Radice, S Manoukian, D M Eccles, N Tang, E Olah, H Anton-Culver, E Warner, J Lubinski, J Gronwald, B Gorski, H Tulinius, S Thorlacius, H Eerola, H Nevanlinna, K Syrjäkoski, O-P Kallioniemi, D Thompson, C Evans, J Peto, F Lalloo, D G Evans, D F Easton, American Journal of Human Genetics (3 April 2003), "Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case Series unselected for family history: a combined analysis of 22 studies."
  3. Michelle Fox, CNBC (31 October 2020), "Genetic testing can assess your risk of getting cancer. Here are the costs involved."
  4. Centers for Medicare and Medicaid Services (2008), "Clinical Laboratory Improvement Amendments (CLIA)."
  5. U.S. Equal Employment Opportunity Commission (2009), "Genetic Information Discrimination."
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The Petition:

Dear Secretary of the Department of Health and Human Services,

I urge you to adopt legislation requiring all insurance companies to provide coverage for BRCA gene testing upon recommendation from a medical professional. Breast cancer is the most common malignancy in women and the second leading cause of cancer death, and unfortunately most of us know at least one mother, sister, or friend who has been touched by this disease.

A woman who has inherited a harmful mutation in BRCA1 or BRCA2 is about five times more likely to develop breast cancer than a woman who does not have such a mutation, and families have the right to know about their own genetic risks. Medical experts, not insurance companies, should decide who is eligible for genetic testing. Your support is crucial to make these powerful prevention tools accessible to those who are at risk.


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