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Policies are Needed for Hereditary Cancer Patients to Afford Care

— July 25, 2023

Patients at high risk of developing cancer need better policies to access preventive treatments.

Millions of individuals across the country are grappling with a genetic mutation that significantly increases their risk of hereditary cancer. However, despite this alarming statistic, a lack of comprehensive policies has left many individuals struggling to afford the vital preventive healthcare they require.

Medical experts assert that supplemental cancer screenings and preventive surgeries, including hysterectomies and mastectomies for those at the highest risk, can effectively aid in the avoidance or early detection of hereditary cancer before it has the opportunity to spread. Unfortunately, excessive medical costs present an ongoing challenge, compelling numerous individuals to forgo interventions recommended by healthcare providers in alignment with accepted national guidelines.

Although the Affordable Care Act (ACA) mandates that most private health insurance companies cover BRCA genetic testing in women identified as high-risk for ovarian and breast cancers, it does not extend the same requirement to cover supplementary cancer screenings and preventive surgeries suggested for those testing positive. Consequently, many patients are left knowing they face a heightened cancer risk but little financial aid to mitigate it.

Lisa Schlager, head of public policy at FORCE (Facing Our Risk of Cancer Empowered), a prominent organization dedicated to supporting individuals at risk of hereditary cancer, said that the plight of these patients is a familiar tale. Each week, she encounters countless individuals compelled to bear the financial burden of safeguarding their health.

Policies are Needed for Hereditary Cancer Patients to Afford Care
Photo by Darina Belonogova from Pexels

Also, drawing from personal experience as someone with a BRCA mutation, elevating her susceptibility to ovarian, breast, and pancreatic cancer, Schlager has spent tens of thousands of dollars out-of-pocket for screenings and risk-reduction surgeries. Astonishingly, even though the National Comprehensive Cancer Network (NCCN) and others deem these measures to be appropriate preventive care for individuals with her genetic mutation, there is no legal obligation for their coverage under the ACA.

Although private insurance and Medicaid partially cover additional hereditary cancer screenings and risk-reducing surgeries in most states, one glaring exception is that Medicare provides little to no coverage for preventive services required by those with cancer-causing mutations. However, a potential solution is on the horizon, as the Reducing Hereditary Cancer Act was introduced in the U.S. House and Senate earlier this year. The bill aims to protect Medicare patients at risk for hereditary cancer by allowing them access to necessary healthcare, testing, and genetic counseling.

Currently, Medicare solely covers genetic testing for those already diagnosed with cancer, disregarding their family’s cancer history or known genetic mutations. This policy, which fails to provide genetic testing, which is relatively inexpensive, until after a patient receives a potentially terminal cancer diagnosis, has been criticized by U.S. Representative Debbie Wasserman Schultz, who co-sponsored the bill and has a BRCA2 gene mutation, deems it “nonsensical.” Should the Reducing Hereditary Cancer Act pass, not only would it decrease taxpayer expenditure by aiding more patients in preventing or detecting cancer early, when treatment is more manageable and affordable, but it would also save countless lives. The merit of this legislation, Schlager notes, is undeniable.

As if the incomplete coverage of preventive cancer services by Medicare and health insurers were not troubling enough, Schlager says that some insurers exploit customers’ health information to deny coverage or inflate rates. Although the Genetic Information Nondiscrimination Act (GINA) bars health insurance companies and employers from discriminating based on genetic information, this safeguard does not extend to other types of insurance. Consequently, individuals within the hereditary cancer community, who have never experienced cancer, frequently face denials or significantly higher premiums when seeking essential safety nets such as life, disability, and long-term care insurance.

In her editorial, Schlager said that the time has come to revise healthcare and genetic privacy laws so that individuals with a higher risk of hereditary cancer receive the requisite testing, genetic counseling, screenings, preventive care, and insurance coverage they deserve, with minimal or no additional costs. She says that concerned citizens must reach out to their respective members of Congress today, expressing support for the Reducing Hereditary Cancer Act and urging them to champion legislation that bridges the gaps in preventive healthcare for those impacted by hereditary cancer.

By joining forces, Schlager believes Americans can all combat unfair insurance practices, ensuring everyone receives the necessary services without enduring financial hardships or discrimination based on genetic information.


Policymakers are failing to protect patients at risk of hereditary cancer

Genetic Counseling & Testing Under the Affordable Care Act (ACA)

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