Policymakers are failing to protect patients at risk of hereditary cancer

Millions of people in the United States have a genetic mutation that increases their cancer risk, yet policy gaps leave many of them struggling to pay for the lifesaving preventive health care they need.

We know that additional cancer screenings and preventative surgeries — such as mastectomies and hysterectomies for those with the greatest risk — can help people avoid hereditary cancer or catch it early, before it has a chance to spread; however, high medical costs can be an ongoing burden that causes many people to skip the interventions recommended by their doctors in accordance with national guidelines. 

While the Affordable Care Act (ACA) requires most private health insurers to cover BRCA genetic testing for women at high risk for breast and ovarian cancers, it doesn’t require insurers to cover the extra cancer screenings and preventative surgeries recommended for those who test positive. That leaves many patients with the knowledge that they are at high risk for cancer and little financial assistance to stop it.

As head of public policy at FORCE (Facing Our Risk of Cancer Empowered), I meet people every week who are forced to pay out-of-pocket to safeguard their health. One young woman with a BRCA2 mutation told me she pays thousands of dollars every year for an annual breast MRI that her insurance won’t fully cover. Another woman with a PALB2 mutation, whose doctor told her to start mammograms at age 30, has to meet her annual deductible or incur a significant co-pay because she is not yet 40 years old (the age that the ACA requires most insurers to fully cover mammograms). High-risk people needing colonoscopies before age 45 face the same issue.

As a previvor with a BRCA mutation — which puts me at elevated risk for breast, ovarian and pancreatic cancer — I have personally paid tens of thousands of dollars out-of-pocket for cancer screenings and risk-reducing surgery, despite the National Comprehensive Cancer Network (NCCN) and other medical guidelines classifying them as appropriate preventive care for someone with my genetic mutation.

While the ACA doesn’t require it, in most states, private insurance or Medicaid will at least partially cover additional hereditary cancer screenings and risk-reducing surgeries. One glaring exception is Medicare, which covers little to no preventative services for those with cancer-causing mutations. The Reducing Hereditary Cancer Act, introduced in the U.S. House and Senate earlier this year, would ensure that Medicare patients at risk for hereditary cancer have access to the health care they need, as well as genetic counseling and testing.

Under current law, Medicare only covers genetic testing for beneficiaries already diagnosed with cancer, regardless of family cancer history or a known genetic mutation in the family. Wasserman Schultz, who co-sponsored the bill and has a BRCA2 gene mutation, rightly said it was “nonsensical” for Medicare to deny coverage for relatively inexpensive genetic testing until after a patient has received a potentially terminal cancer diagnosis.

The passage of this bill would not only reduce taxpayer spending by helping more patients prevent or catch cancer early, when it’s easier and less expensive to treat, but it would save the lives of countless Americans. It’s a no-brainer.

As if Medicare and health insurers refusing to fully cover preventive cancer services wasn’t bad enough, some insurers are legally allowed to use customers’ health information to deny or raise rates. While the Genetic Information Nondiscrimination Act (GINA) prohibits discrimination by health insurance plans and employers based on genetic information, the same isn’t true for other forms of insurance. This means people in the hereditary cancer community, many of whom have never had cancer, are frequently denied or charged significantly higher rates for basic safety nets like life, long-term care and disability insurance.

I personally have family members who refuse to undergo genetic testing because they are afraid that they, and possibly their children, could be denied insurance or subjected to massive premiums. Not only is this unfair, but it discourages people from seeking genetic testing that could reveal and empower them with life-saving information.

It’s time to update our health care and genetic privacy laws to ensure that people at high risk of hereditary cancer get the genetic counseling, testing, screening, preventative care and insurance coverage they deserve — at little or no additional cost. Contact your members of Congress today to express your support for the Reducing Hereditary Cancer Act and urge them to champion legislation that will close the gaps in preventive health care for those affected by hereditary cancer.

Together, we can fight unfair insurance practices to ensure everyone receives the services they need, without facing financial burdens or discrimination based on their genetic information.

Lisa Schlager is vice president of public policy at Facing Our Risk of Cancer Empowered (FORCE), based in Tampa, Fla. FORCE is a nonprofit organization that serves the hereditary cancer community through education, support, advocacy and research.