Let’s face it: not all breasts are created equal. And neither are all breast cancer risks. Angelina Jolie had her breast tissue removed to reduce her chance of developing cancer after testing positive for a genetic mutation associated with an extremely high lifetime risk of breast cancer. Jolie’s experience is not an everywoman story for a number of reasons. Health care is not created equal, and Jolie was lucky to have the very best red carpet treatment throughout her experience. High risk of breast cancer is not created equal, either.
Jolie’s risk comes from a genetic mutation on the BRCA1 gene, a gene responsible for the repair of damaged DNA. A defect to this tumor suppressor gene that Jolie inherited from her mother means that she has an extremely high lifetime risk of breast and ovarian cancer, as well as an elevated risk of some other cancers. Knowing her risk allows Jolie, and women like her, to choose to undergo frequent cancer screening and/or take medical steps to reduce the risk of cancer.
In her OpEd, Jolie notes that too many women cannot afford genetic testing that provides potentially life-saving information. In order for any women to weigh the harms and benefits of medical intervention to reduce her chance of breast cancer, she needs to know the risk of breast cancer in the first place. Since the mid-1990s, Myriad Genetics has held patents on the human BRCA1&2 genes and consequently has the monopoly on all testing, development of new diagnostic tests, and development of targeted therapies related to these genes. These patents were recently challenged in the U.S. Supreme Court and a ruling in that lawsuit is expected this summer.
The BRCA genes (commonly referred to as the “breast cancer genes”) are present in all people and some mutations on these genes are linked to a family history of breast and ovarian cancer. Due to technological advances, a number of labs say they are able to provide a more comprehensive test than the one available today for just a few hundred dollars. However, in the U.S., only one company, Myriad Genetics, offers the commercial test to women–for which it charges well over $3,000–that identifies the cancer-linked mutation on the BRCA1&2 genes.
For women who carry these cancer linked mutations, the statistics are sobering. In Angelina Jolie’s case, her risk of being diagnosed with breast cancer by the time she is 70 years old is about 87%. By comparison, among the healthy population who do not carry an inherited mutation, 87% of women will never get breast cancer. To further put “high risk” in perspective, for women diagnosed with a ductal carcinoma in situ (DCIS), sometimes called a “pre cancer,” the risk of developing invasive breast cancer is between 20-30%. High risk means one thing for the general population, and another thing altogether for women with a BRCA mutation.
Up to 90% of breast cancers are not inherited. An estimated 1 in 500 women have a cancer-linked BRCA mutation. For these women, the information provided by a genetic test is potentially life-saving.
Thirty years after wide spread breast cancer awareness campaigns, most women over-estimate their individual risk of breast cancer. Jolie’s attention grabbing story has ramped up discussions about drastic steps to reduce the risk of breast cancer. But Angelina Jolie is not everywoman.
Most women are more concerned about access to critical information and quality healthcare. The current focus on Jolie’s individual story is an opportunity to look at health inequities, corporate influence over healthcare and ownership of human genes that affect all of us. These are the issue that should be grabbing the headlines.