Tens of millions of Americans have received genetic testing clarifying their risk of disease, and a majority of adults in the United States say they would be interested in getting tested. When we each turned 20, we looked for genetic testing to find out if we had inherited our mother’s BRCA mutation, which significantly increases the risk of breast, ovarian and other cancers. We each had a 50 percent chance of inheriting it, but our fates diverged: One of us, Emma, has the mutation and the other, Leah, doesn’t.
The results of this genetic coin toss mean that Leah is well protected financially by her health insurance, while Emma and countless other people with a high-risk genetic mutation are not. It is an inequality that the United States must correct through state and federal law.
The Affordable Care Act requires most private health insurance companies to cover genetic testing for people at high risk of having certain harmful mutations at no cost to the patient. But more than a decade after the bill was passed, people with genetic mutations remain unprotected in two main ways.
First, insurers don’t have to cover genetic testing for all harmful mutations. Private insurers are required to cover genetic testing only for BRCA mutations in high-risk women. (Both of our tests were covered.) They don’t have to cover for other common genetic conditions, such as Lynch syndrome, the most common cause of hereditary colon cancer. It is unfair to demand coverage for only a small subset of patients with high-risk mutations when scientists know many others and continue to discover new ones.
A second problem is that insurers do not have to reimburse the recommended aftercare for many patients with a high-risk mutation. For example, both the American Cancer Society and the National Comprehensive Cancer Network recommend that young women at high genetic risk for breast cancer have annual magnetic resonance imaging scans. But the ACA doesn’t require private insurers to cover the cost of those scans.
As a result, while Leah is legally entitled to receive her medically recommended breast cancer screenings for free, insurers are not required to cover the earlier and more frequent screenings Emma needs. (Medicare and Medicaid, which have different rules than private insurers, may cover more genetic testing, but some patients may still have insufficient coverage.)
A similar problem plagues people with colon cancer mutations who need early colonoscopies, such as those with Lynch syndrome. And people with rarer mutations may face even greater barriers to getting the necessary care paid for by their insurers.
Not only is this unfair, it is also not cost effective. Early detection of cancer through medically recommended screenings can save healthcare providers the enormous costs of treating late-stage cancer.
Health insurers sometimes choose to reimburse some of these services, but even in these cases, high deductibles and out-of-pocket costs can make this care unaffordable.
The practical consequences are predictable and devastating. Breast MRIs can cost thousands of dollars before coverage is provided, and only a quarter of high-risk women have MRIs fully covered. As a result, women can forego this potentially life-saving screening. Research suggests that even small increases in out-of-pocket costs — as low as $10 for a drug — can cause patients to avoid treatments with big benefits.
Even patients seeking care may find that their options are limited: If a risk-reducing mastectomy is paid in full, but annual breast MRIs are not, young women may feel pressured to get mastectomy because of expensive scans. Some women may avoid genetic testing for fear that a positive test could increase health costs.
Legislation is required to ensure that people at high genetic risk for cancer receive full coverage — at no cost to them — if they want to undergo genetic testing or preventive screenings. The ACA bases its coverage requirements on recommendations from the U.S. Preventive Services Task Force, which rates preventive medical services, such as cancer screenings, based on how likely they are to be beneficial.
But these recommendations are aimed at people with an average risk of cancer, and generally omit people with genetic mutations. For example, the recommendations for colorectal cancer and breast cancer screening specifically say they are not designed for people with high-risk mutations. Private insurers are therefore not obliged to reimburse the extra screenings that these patients need.
The federal government should require insurers to cover the screenings necessary for people at increased genetic risk at no cost to the patient. In the absence of federal legislation, several states have proposed promising solutions. New York recently passed a law requiring insurers to cover the cost of breast MRIs when medically necessary, and Massachusetts is considering similar legislation.
Americans who carry high-risk mutations represent a large and vulnerable population, but their predicament is in many ways just the beginning. As genetic testing increases, doctors will be able to make increasingly sophisticated risk predictions for larger groups of people. Healthcare policy must keep pace with science. Health insurers are not allowed to treat sisters differently based on a genetic coin toss.
Leah Pierson (@leah_pierson) is a medical student at Harvard and a Ph.D. student at Harvard T.H. Chan School of Public Health. Emma Pierson (@2plus2make5) is an assistant professor of computer science at Cornell Tech and Technion-Israel Institute of Technology and an assistant professor of public health sciences at Weill Cornell Medical College.
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