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Policy Archive

High-Risk Individuals Often Struggle to Get Insurance Coverage of Health Services

Insurance Coverage & Barriers

The Patient Protection and Affordable Care Act (ACA) guarantees coverage of a number of essential health services and cancer screenings at no cost to the patient.* This has allowed many Americans to access care that they might not otherwise be able to afford. As many in the hereditary cancer community have learned, however, health insurers are not required to cover cancer screenings beyond those mandated in the ACA, which are focused on the "average risk" population. Members of our high-risk community often struggle to get coverage for earlier, more intensive cancer screenings and risk-reducing surgeries. This is why FORCE has developed sample appeal letters for a variety of screening and preventive services.

Under the ACA, any preventive service receiving a grade "A" or "B" from the U.S. 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 cervical cancer (women ages 21-65), colorectal cancer (adults ages 50-75), and mammograms (women ages 40-74), as well as BRCA genetic counseling and testing for women who are suspected to be at increased risk of breast or ovarian cancer.

With the exception of BRCA testing for women, however, the covered preventive services are for the "average risk" population. Screening recommendations for those at increased risk of cancer go above and beyond those provided under ACA. For example, the National Comprehensive Cancer Network (NCCN) guidelines for women with BRCA mutations recommends that they begin annual breast MRI screenings with contrast between ages 25-29 and annual mammograms with consideration of tomosynthesis should be added at age 30. Those with ATM, PALB2, CDH1, CHEK2 and other mutations should also start mammograms earlier and/or undergo breast screening MRIs. NCCN guidelines for colorectal cancer recommend that colonoscopies should begin at ages 20-25 or 2-5 years prior to the earliest colon cancer in the family for those with Lynch Syndrome.

Because these screenings are not recommended by the USPSTF or required under the ACA, insurers are not required to cover them. They may claim that the services are "not medically necessary" or "experimental." As a result, women who need an annual breast MRI may end up paying thousands of dollars out of pocket every year. Likewise, women under the age of 40 seeking mammograms and those needing colonoscopies before age 50 may have to meet their deductible or incur a significant copay because they don't yet qualify for these screenings at no cost-sharing under the ACA. Previvors undergoing risk-reducing surgeries, while often covered by insurers, may face significant costs depending on their insurance plan, deductible, etc. Even access to genetic testing can be a challenge for some as testing men is not included in the USPSTF BRCA-related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing guidelines and testing for mutations in genes other than BRCA is not addressed.  

In an ideal world, the USPSTF would address the unique screening and prevention needs of the high-risk cancer community, but it has yet to do so. Alternatively, all health insurers could follow the NCCN guidelines, covering the recommended interventions with limited or no out-of-pocket costs for the patient. Unfortunately, this is not currently the case. We recognize that this presents a challenge for members of our community and continue to actively advocate for affordable coverage of health services for those at increased risk of cancer.

In the meantime, visit the Health Insurance Appeals section of our website to learn more and to access downloadable sample appeal letters for a broad range of services and interventions. These letters cite a variety of medical society guidelines, clarifying the appropriate health services for members of the hereditary cancer community and providing evidence of medical necessity.

Securing insurance coverage of a needed screening or surgery does not mean that you will have no out-of-pocket expenses. Depending on your health plan, you can expect to be charged a copay or for the costs to be applied toward your deductible. However, the overall cost to you will be less--often by a significant amount--than the cost would be without insurance coverage. See the "Related Resources" box below for additional information on paying for care and financial assistance programs for those in need.

Need help with an appeal for a service or treatment not listed? Let us know.

* Note: A small number of group health insurance plans, often self-funded, are exempt from the ACA. Additionally, Medicaid and Medicare have their own rules and guidelines for coverage of preventive services.

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News Briefs

4/29/2024 - Sent the Administrator of the Centers for Medicare & Medicaid Services (CMS) feedback and recommendations on its Medicare Advantage and Prescription Drug Programs: Part C and Part D Medicare Prescription Payment Plan Model Documents.

4/3/2024 - Submitted comments to Senator Cassidy and the HELP Committee in response to an RFI regarding oversight of clinical diagnostic tests, known as in vitro diagnostics (IVDs) and laboratory-developed tests (LDTs).

3/15/2024 - Joined the Coalition to Increase Access to Cancer Care (CIACC) in comments to House leadership on efforts to strengthen the Employee Retirement Income Security Act (ERISA) and emphasize the need to pass the Cancer Drug Parity Act.

3/1/2024 - Provided feedback to CMS on the Medicare Advantage Advanced Notice and accompanying Part D Redesign Program provisions aimed at reducing and managing beneficiary out-of-pocket costs in the Medicare Part D program.