Tens of millions of Americans have received genetic tests illuminating 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 sought genetic testing to learn whether 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, does not.
The results of this genetic coin toss mean that Leah is financially well protected by her health insurance, while Emma and countless other people who have a high-risk genetic mutation are not. It’s an inequity that the United States should rectify through state and federal legislation.
The Affordable Care Act requires most private health insurers to cover, at no cost to the patient, genetic testing for people at high risk of having certain harmful mutations. But more than a decade after the passage of the bill, people with genetic mutations remain unprotected in two important 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 do not have to cover testing for other common genetic conditions, like Lynch syndrome, the most common cause of hereditary colon cancer. It’s unfair to require coverage for only a small subset of patients with high-risk mutations when scientists know of many others and continue to discover new ones.
A second problem is that insurers are not required to cover the recommended follow-up care for many patients who carry a high-risk mutation. For instance, both the American Cancer Society and the National Comprehensive Cancer Network recommend that young women at high genetic risk for breast cancer undergo annual magnetic resonance imaging scans. But the A.C.A. does not 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 do not have to cover the earlier and more frequent screenings that Emma requires. (Medicare and Medicaid, which operate under different rules from private insurers, can cover more genetic testing, but some patients can still encounter insufficient coverage.)
A similar problem plagues people with colon cancer mutations who require early colonoscopies, like those with Lynch syndrome. And people with rarer mutations may face even greater barriers to having necessary care paid for by their insurers.
This isn’t just unfair, it’s not cost-effective. Catching cancer early through medically recommended screenings can save the health care system the huge costs of treating late-stage cancers.
Health insurers sometimes choose to cover some of these services, but even in these cases, high deductibles and co-payments can render this care unaffordable.
The practical consequences are predictable and devastating. Breast M.R.I.s can cost thousands of dollars before coverage, and only a quarter of high-risk women have M.R.I.s fully covered. As a result, women may forgo this potentially lifesaving screening. Research suggests that even tiny increases in out-of-pocket costs — as small as $10 for a drug — may lead patients to avoid treatments with large benefits.
Even patients who do seek care may find that their options are limited: If a risk-reducing mastectomy will be fully paid for, but yearly breast M.R.I.s will not, young women may feel pressured to get mastectomies over expensive scans. Some women may avoid genetic testing out of fear that a positive test could increase health costs.
Making sure people at high genetic risk for cancer are guaranteed full coverage — at no cost to them — if they seek genetic testing or preventative screenings requires legislation. The A.C.A. bases its coverage requirements on recommendations from the U.S. Preventive Services Task Force, which grades preventative medical services, like cancer screenings, based on how likely they are to be beneficial.
But these recommendations focus on people at 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 thus not required to cover the extra screenings 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. Failing federal legislation, several states have put forth promising solutions. New York recently passed a law requiring insurers to cover the cost of breast M.R.I.s 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, only the beginning. As genetic testing expands, doctors will gain the ability to make increasingly sophisticated risk predictions for larger groups of people. Health care policy must keep pace with the science. Health insurers should not be able to treat sisters differently on the basis of a genetic coin toss.
Leah Pierson (@leah_pierson) is a medical student at Harvard and a Ph.D. student at the 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 population health sciences at Weill Cornell Medical College.
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