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Why young women should be able to know their risk of developing breast cancer

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Early in 2014, my older sister made time stand still by uttering just four words: “I have breast cancer.” She was diagnosed at 28, and given her young age, I wanted to get genetically tested for genes linked to breast cancer to understand my own risk of developing the disease. But I soon found out that insurance companies will not cover the genetic testing that could potentially allow me to take agency over my own health.

Every year, 237,000 cases of breast cancer are diagnosed in the United States, and 41,000 of those diagnosed women die from the disease, according to the Center for Disease Control and Prevention. Genetic testing can be a crucial step toward helping women who test positive for BRCA1 or BRCA2, the specific genes that increase a woman's chance of getting breast cancer by 72 percent and 69 percent respectively, take proactive measures to avoid the torment of a breast cancer diagnosis. These steps include immediately getting a mammogram and frequently getting screened for breast cancer thereafter (which is especially important for women under 40, because yearly mammograms are usually recommended for women over 40).

Insurance companies are mandated by the Affordable Care Act to provide clients who meet the United States Preventive Services Task Force (USPSTF) guidelines with screening and treatment for different cancers. These guidelines recommend that primary care providers screen women who have a family history of breast cancer in order to find “breast cancer susceptibility genes (BRCA1 or BRCA2).” But these guidelines don’t provide for those who have genes linked to breast cancer that aren’t specifically BRCA1 or BRCA2 genes. So, those who have a family history of breast cancer linked to non-BRCA1 or BRCA2 genes aren’t guaranteed genetic testing under the Affordable Care Act.

Many insurance policies usually follow the ACA’s lead and adhere to strict restrictions in terms of who is covered for getting genetically tested. These restrictions include requiring a certain number of family members to have cancer before one can be covered for tested for a related gene, or stating which genes can and cannot be tested for. Some at-risk women, therefore, fail to qualify. A study published this summer in The Annals of Surgical Oncology concluded that a substantial number of Medicare patients who did not fit Medicare’s criteria for genetic testing had genes associated with breast cancer. Some of Medicare’s criteria for being screened included being older than 40 and to have already had a breast exam that showed cancer. The study concluded that there needs to be significant expansion and simplification of genetic testing for breast cancer. Insurance companies, therefore, are effectively denying a number of women the chance to proactively address their health.

Some critics argue that insurance policies shouldn’t have to lessen their restrictions on genetic testing because individuals can buy direct-to-home genetic testing kits, like those sold by 23andMe. They argue that these kits are cheaper, Federal Drug Administration (FDA) approved, and offer the same results as getting genetically tested by a medical provider. It seems that many people may be going this route anyway since, according to the Washington Post, Ancestry.com sold 1.5 million direct-to-home kits last year. But these critics overlook the fact that these kits sometimes give false positives and false negatives. Genetic testing done by a medical provider is the most reliable option, even in the cases that are difficult to get covered through insurance.

So, what is one supposed to do? The M.D. Anderson Cancer Center took the initiative to create a study called “Making Genetic Testing Accessible” (MAGENTA) in order to provide free genetic testing for women. While this is a great stride, and one that will ideally be replicated by cancer centers across the country, American women don’t have legislation on a federal level to help them receive accessible genetic testing. Until then, we must directly urge insurance companies to change their policies in order to make genetic testing more accessible to women by lessening their restrictions for screening.



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Pooja Tewari
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