by Lisa Schlager
(Note: Adapted from an article in the September 2018 issue of The Oncology Nurse)
In 2010, FORCE spearheaded passage of a Congressional resolution declaring the first-ever National Hereditary Breast and Ovarian Cancer Week and National Previvor Day. This year, Previvor Day is October 3rd. Over the past 8 years, the number of people identifying as previvors has grown substantially as more people have undergone genetic testing for inherited cancer risk. The most rapid increase in testing can be traced back to 2013 when 3 important events occurred:
- The US Supreme Court ruling struck down Myriad Genetics’ BRCA gene patents
- Angelina Jolie’s editorial about her BRCA1 mutation was published in The New York Times
- The US Preventive Services Task Force issued guidelines on BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing
The result was heightened awareness about BRCA mutations and hereditary cancers, increased competition in the genetic testing industry, and perhaps most importantly, insurance coverage of genetic counseling and BRCA testing for women who meet specific family cancer history criteria.
Under the Affordable Care Act (ACA), any preventive service receiving a grade “A” or “B” from the US Preventive Services Task Force (USPSTF) must be covered by most group health plans with no out-of-pocket costs to the patient. This includes important screenings for colorectal cancer (ages 50-75) and breast cancer (women ages 40-74),* as well as BRCA genetic counseling and testing for women who are suspected to be at increased risk for breast or ovarian cancer.
The ACA’s inclusion of these and other essential health benefits has enabled many Americans to access care that they may not otherwise be able to afford. It is important to note, however, that with the exception of BRCA testing for women, the covered preventive services are for the “average risk” population. Previvors with an increased risk of cancer are no longer considered average risk.
So, what happens when someone tests positive for BRCA or another mutation and needs to begin cancer screenings earlier or more often than the general population? Or, undergoes risk-reducing surgeries? Is this covered by insurance? As many members of our community know, the answer is not clear-cut.
Health insurers are not required to cover prophylactic surgery or cancer screenings beyond those mandated in the ACA—even if they are recommended by the National Comprehensive Cancer Network (NCCN). As such, men who have not been diagnosed with cancer often struggle to get BRCA testing covered. Individuals who want multigene panel testing may have to foot the bill. The young woman with a BRCA2 mutation who needs an annual breast MRI may end up paying thousands of dollars out-of-pocket every year. The woman with a PALB2 mutation who should start mammograms at age 30 may have to meet her deductible or incur a significant copay because she is not yet 40 years old, and therefore does not yet qualify for mammograms at no cost-sharing under the ACA. High-risk people needing colonoscopies before age 50 face the same issue.
Insurance coverage of risk-reducing surgeries may also present challenges. Women with BRCA, RAD51, BRIP1, Lynch Syndrome and other mutations are often advised to undergo a risk-reducing bilateral salpingo-oophorectomy and/or hysterectomy. Prophylactic mastectomy may be considered for women with BRCA, PTEN, or TP53 mutations, as well as for women with other mutations and a strong family history of breast cancer. Although not required, the majority of group health plans cover these surgeries, but some women must file multiple appeals to justify medical necessity—and many end up saddled with medical debt due to large deductibles, copays, and other expenses.
Faced with ongoing, high medical costs each year, many struggle to get the recommended screenings and surgeries, or skip them altogether. Financial toxicity is well-recognized in the cancer survivor community and numerous programs exist to help alleviate some of the burden. The parallel burdens faced by those at high risk for cancer should not be overlooked. The goal, after all, is to prevent cancer or to catch it early when it is more easily treated.
We know that the current state of affairs is not ideal. With dozens of genes now linked to hereditary cancer risk, the need for personalized medicine and cancer screenings is of utmost importance. FORCE is committed to exploring ways to ensure that members of our community have affordable access to all of the recommended interventions with more favorable insurance coverage, improved/more comprehensive medical guidelines, and even legislation to mandate coverage of screening, preventive, and family building services.
Visit the Advocacy section of the FORCE website for updates on these efforts. For those struggling with insurance coverage of screening and preventive services, be sure to check out our information on Paying for Care and Health Insurance Appeals, where sample letters for a variety services are available.
*The USPSTF Guidelines, published in January 2016, raised the recommended age for starting of screening mammography from 40 to 50 years of age. The Protecting Access to Lifesaving Screenings Act of 2015, however, placed a moratorium on the new guidelines. This has maintained access to annual mammograms with no copay or cost-sharing for women ages 40-74 under the ACA.