Buried in the fine print of many marketplace health plan documents is language that allows them to refuse to cover a range of services, many of which disproportionately affect women, a recent study found.

It’s unclear the extent to which these coverage “exclusions” have prevented patients from getting needed treatments. An insurance industry representative said patients are generally able to get the care they need if it’s appropriate for them. Yet, some women with hereditary breast and ovarian cancer, advocates say, may have gaps in care because of the exclusions.

More broadly, experts said that the report provides a useful roadmap to potential coverage issues that may still need to be addressed, despite significant improvements following passage of the federal health law.

The study, by researchers at the National Women’s Law Center, an advocacy group based in Washington, D.C., examined health coverage exclusions in marketplace plans offered by 109 insurers in 16 states in 2014 and 2015.

The health law requires insurers to provide a general summary of benefits and coverage for every plan that states whether the plan excludes coverage of 13 specific services, including acupuncture, bariatric surgery and infertility treatment. These coverage summaries, which are no longer than eight pages, are easy to read and available online or in paper form. But other services that aren’t in the summary documents may be excluded as well, although they may be hard for consumers to find because they appear in the detailed plan coverage materials. Health plans must provide a link from the online summary to those documents, which can be quite technical and run dozens of pages.

Reviewing these detailed documents, researchers identified six types of excluded services that could have a disproportionate impact on women’s health care, although many of them also apply to men. The excluded services included:

• Treatment for conditions that result from non-covered services, for example, if you get an infection following cosmetic surgery (42 percent of plans).
• Maintenance therapy for a chronic disease or other care that prevents regression of a stable condition (27 percent of plans).
• Genetic testing, except as required by law (15 percent).
• Fetal reduction surgery, which is sometimes recommended when a woman is carrying multiple fetuses, to protect the woman’s health or improve the odds a pregnancy will be successful (14 percent).
• Treatment for self-inflicted conditions, such as a suicide attempt or eating disorder (11 percent).
• Preventive services not required by law (10 percent).

“We wanted to highlight issues that would have a particular impact on women as well as show how broad some of the exclusions are,” said Dania Palanker, who co-authored the study and is now an assistant research professor at Georgetown University’s Center on Health Insurance Reforms.

It’s not uncommon for women who have a family history of breast or ovarian cancer to run into this type of roadblock when they need genetic testing or preventive services, said Lisa Schlager, vice president of community affairs and public policy at Force, an advocacy group for people affected by hereditary breast, ovarian and related cancers.

The health law requires insurers to cover services that are recommended by the U.S. Preventive Services Task Force, an independent panel of medical experts, without requiring consumers to pay anything out of pocket. The task force recommends that women with a family history of breast or ovarian cancers receive genetic counseling and, if necessary, testing for a mutation in the BRCA1 or BRCA2 genes that are known to increase the risk of developing those cancers.

However, insurers aren’t required to cover testing for the 40 or so other genetic mutations that are also recognized as increasing women’s risk of breast or ovarian cancer, Schlager said, and many don’t do so.

If a woman does test positive for a BRCA mutation, insurers may not cover earlier or more frequent screening or other preventive care she may need, Schlager said.

“We are in this strange scenario where insurers are paying for the testing and then not paying for the breast MRIs or prophylactic mastectomies,” she added.

Clare Krusing, a spokesperson for America’s Health Insurance Plans, a trade group, called the report “overblown.” She said it fails to address important issues such as whether treatments are safe and effective for all patients, whether there are alternative treatments that are covered and the processes in place to enable patients to get access to treatments if for whatever reason a plan doesn’t provide coverage.

“If a patient has a medically necessary reason for this care, it will likely be covered,” Krusing said.

Kirsten Sloan, senior policy director at the American Cancer Society Cancer Action Network, said people who use the society’s call center aren’t generally complaining about plan coverage exclusions. Still, coverage distinctions may be confusing for patients, Sloan said, and highlight the need for better transparency in communicating coverage information.

More research is needed to understand how these exclusions affect patient care, said Gwen Darien, executive vice president for patient advocacy at the National Patient Advocate Foundation.

“What the study does and calls for is further uncovering where the exclusions are and to make sure plans cover them as part of the essential health benefits,” she said.

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