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Health Insurance Issues: Hereditary Breast Cancer

Health Insurance Issues: Hereditary Breast CancerBy Kathy Steligo

We may not realize it, but medically, we’re living in an age Flash Gordon would envy. Thanks to genetic research, we better understand the origins of diseases. And although genetics is still a young science, medical diagnostics and treatments that were unimaginable just a few short years ago are now reality.

All cancers are genetic. They develop when environmental or hereditary factors cause mutations—irreparable damage—in our genes. In some families, these mutations are hereditary, and may be passed along from one generation to the next. Today, individuals can be tested to see if they carry an inherited mutation known to increase the risk of developing breast cancer.

Genetic Counseling and Testing

Scientists predict that in the next decade, we will identify hereditary factors contributing to virtually all common diseases, including cancer, heart disease, diabetes, mental illness. Today, 1,200 genetic tests are available to screen individuals for a predisposition to one disease or another, including hereditary breast cancers. The value of these tests can be priceless. Knowing your genetic predisposition to a disease puts you in the driver’s seat, allowing you to proactively manage your risk.

Genetic counseling and testing for hereditary cancer is becoming more common, and most health care now covers a portion or all of the cost of these services. If you suspect that you may be at risk for hereditary breast cancer, ask your physician for a referral (if required by your insurance) to a certified genetics counselor. This specially-trained genetics expert will assess your family medical history and determine whether you should be tested for an inherited BRCA mutation that puts you at increased risk for breast cancer.

If you decide to be tested, your insurance company may require a letter from your genetics counselor or referring physician stating the medical necessity of the test. Myriad Genetics (800-469-7423 or, the sole source of BRCA testing in the U.S., can determine whether your health plan covers the testing and help you obtain preauthorization, if required. [Ed. note: In June 2013, after original publication of this article, a Supreme Court ruling changed the landscape of genetic testing.]

Even when your insurance would otherwise cover the cost of counseling and testing, certain circumstances may compel you to pay for these services yourself. If your in-network genetic counselor can’t see you as soon as you’d like, you may decide to pay out-of-pocket to see a counselor outside your plan. Or, like many women, perhaps you fear discrimination based on your test results, and you would rather pay the cost of counseling and testing than involve your health insurer.

Increased Surveillance, Chemoprevention and Prophylactic Surgery

Learning you have a BRCA mutation means you have another tough decision to make: what do you do with the knowledge that you are predisposed to a 50-85 percent lifetime risk of developing breast cancer and up to a 60 percent lifetime risk of developing ovarian cancer? Do you opt for increased surveillance, take preventative medication or have prophylactic surgery? Will your health insurance support your decisions by paying for these potentially life-saving actions?

Increased surveillance. Increased surveillance includes annual mammograms (beginning at age 25), monthly self-exams, semi-annual clinical exams, and ultrasound, MRI or other diagnostic scans. These efforts can’t prevent breast cancer, but they focus on identifying disease at its earliest stages, when it can be successfully treated. Because a BRCA mutation raises your risk of ovarian cancer as well as breast cancer, your doctor may also suggest increased ovarian surveillance, including semiannual clinical pelvic exams, and an annual pelvic ultrasound and CA-125 blood test. Most insurance companies cover these costs if your physician provides a strong letter of necessity.

Chemoprevention. For some women, surveillance—watching and waiting to treat early-stage cancer when and if it develops—is not enough; they feel more comfortable taking risk-reducing medications. These chemoprevention drugs, including Tamoxifen, Raloxifene and others, lower breast cancer risk by reducing the effect of estrogen on breast tissue.

Preventative surgery. Many women who test positive for a BRCA mutation prefer aggressive risk-reducing actions rather than surveillance. They choose removal of their breasts, ovaries and Fallopian tubes to eliminate as much future risk as possible. For most of us, paying for these surgeries is beyond our financial means. While some health carriers still categorize these prophylactic procedures as elective and not “medically necessary,” most now cover the cost of preventative surgeries. More insurers are realizing that, in the long run, preventative measures are best for those at high hereditary risk for disease.

The Women’s Health and Cancer Rights Act of 1998 requires group health plans that cover mastectomy to also pay for prostheses, breast reconstruction, and treatment for lymphedema or other physical complications related to mastectomy. Despite the name of this federal law, it doesn’t limit payments to cancer patients. So, if you decide prophylactic mastectomy is the best way to manage your hereditary risk—and you’re insured by a group plan that pays for mastectomy—you’re entitled to the same benefits. Individual policies generally provide coverage as well, but are governed state law. Contact your state’s insurance department for more information.

If you want to have your breasts surgically reconstructed after mastectomy, you may choose the type of reconstruction you prefer, but your health plan is legally required to pay only for procedures that meet the parameters of its plan. Your insurer will likely approve your request for an in-network reconstructive procedure, but approval becomes less clear for out-of-network services. Your group plan, for example, may not have a surgeon qualified to perform the newer single-stage implant reconstruction or muscle-sparing microvascular technique you prefer. Some insurers grant out-of-network payments for these reconstructions, while others routinely deny them. If your plan doesn’t provide the reconstructive method you want, ask your prospective plastic surgeon’s office for help; they have experienced billing coordinators who are used to dealing with insurance companies and negotiating payments. Always understand how much your out-of-pocket expense will be before proceeding with reconstructive surgery.

If you don’t want reconstructive surgery, but do want to restore a more natural shape when you are clothed, most health insurance typically pays for a new breast form or prosthesis every two years, and two bras with special pockets each year. Always submit your doctor’s prescription for your prostheses.

Surveillance, chemoprevention or preventative surgery—whatever course of action you choose, it pays to carefully research the benefits and side effects of each option before you decide how to best manage your risk. Your healthcare team can help you understand each of these options, determine whether your insurance will pay for them, and provide documentation to support your request for coverage. Always verify that your requested benefit is covered and approved before scheduling services. Ask your plan administrator for a clarification if needed.

Genetic Nondiscrimination and Privacy

We’re living in a brave new world of genetic information; but it’s a lopsided world, because insurance coverage and laws concerning discrimination and privacy aren’t keeping pace with health services made possible by genetic discoveries. Genetic information enables us to proactively manage our health and potentially prevent disease. Without adequate legal protection, however, that same helpful information may be used to discriminate against us.

The results of your BRCA test are confidential. Myriad discloses your test information only to the physician or counselor who ordered the test; results are not provided to anyone else, including your insurance company, without your written authorization. If you’re still concerned about your privacy, ask your genetics counselor if your blood sample can be submitted to Myriad with a code number or an assumed name to ensure your anonymity.

The Health Insurance Portability and Accountability Act (HIPAA) established individuals’ rights regarding genetic information. This legislation requires health care professionals to explain your privacy rights and tell you how your medical information, including genetic test results, can be used. The law prohibits group insurers from raising rates, cancelling insurance or denying coverage to people because of their genetic predisposition to a disease, including breast cancer.

Still, a fear of genetic discrimination by their employer or their health insurer keeps many women—including those with a pronounced family history of breast cancer—from having genetic testing. “This perception keeps people from taking advantage of genetic tests that could make a significant difference in their health care decisions and outcomes,” advises Sue Friedman, Executive Director of Facing Our Risk of Cancer Empowered (FORCE), the only national nonprofit organization for individuals at high hereditary risk of breast and ovarian cancer. According to Friedman, most states have some laws to prevent insurance companies and employers from discriminating based on a hereditary risk for disease, but protections vary between states. “Genetic tests, like other medical tests, can provide important, even life-saving information,” said Friedman. “The benefits of testing need to be weighed against the concern about genetic discrimination.”

HIPAA is a protective step in the right direction, but it leaves a lot to be desired: group insurers can still require applicants to reveal whether they’ve had genetic testing, and the law doesn’t apply to individual health, life or disability insurance. And, although HIPAA prevents group insurance companies from discriminating against an individual within a group, it does allow for policy underwriters to raise the rates of the entire group, or cancel the entire group based on the condition of one group member.

The much-needed Genetic Information Nondiscrimination Act (GINA) is proposed federal legislation that would prohibit individual and group insurance companies from determining eligibility or establishing premiums based on an individual’s genetic information, and preclude employers from making hiring or promotional decisions based on an employee’s genetic information. As of this writing, the bill is stalled in Congress. Visit or talk with your certified genetics counselor for the bill’s current status.