How to File an Appeal If Insurance Tries to Deny Your Claim for BRCA 1/2 Genetic Testing

Updated on January 22, 2019
JenniferWilber profile image

Jennifer is a writer and teacher. She was recently diagnosed with a BRCA 1 mutation, and hopes sharing her experience will help other women.

How Appeal an Insurance Claim Denial for BRCA 1/2 Genetic Testing
How Appeal an Insurance Claim Denial for BRCA 1/2 Genetic Testing

What to Do If Your Medical Insurance Denies Coverage for BRCA 1 or BRCA 2 Genetic Mutation Testing

Many medical insurance companies will do everything in their power to deny paying for necessary services, including services that they are technically required by law to cover, including genetic counseling and genetic testing for BRCA 1 and 2 mutations. It is important to know your rights, and to know what to do if you are denied coverage that you are entitled to.

Even if you have already received a letter stating that you have been approved for the testing based on medical necessity, it is still possible to later find out that the insurance company has refused to pay for the testing for some inexplicable reason. If your Explanation of Benefits shows that your claim for BRCA genetic testing was denied, you should be able to appeal this and get the insurance company to pay for it. It may take several months of writing letters and waiting to get everything sorted out, but it is important to not let insurance companies get away with denying claims for important services. My experience is with Medical Mutual, though I imagine many other health insurance companies try the same tactics.

It is important to be aware of your own risk of breast cancer and ovarian cancer.
It is important to be aware of your own risk of breast cancer and ovarian cancer. | Source

Affordable Care Act Coverage Requirements

Under the Affordable Care Act, insurance companies are required, by law, to cover genetic counseling and BRCA 1 and/or BRCA 2 genetic testing for women who meet the United States Preventive Services Task Force (USPSTF) guidelines. These guidelines include women who have a strong family history of breast and/or ovarian cancer, and/or who have family members who have already been identified as having one of the mutations. If your genetic counselor and/or doctor has recommended genetic testing for BRCA mutations, your insurance company legally must cover this testing. If they try to give you the run-around, you are entitled to appeal their rejection of your claim and make them cover the test.

BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing: Summary of Recommendations and Evidence

Women who have Family Members with Breast, Ovarian, Tubal, or Peritoneal Cancer
The USPSTF recommends that primary care providers screen women who have family members with breast, ovarian, tubal, or peritoneal cancer with 1 of several screening tools designed to identify a family history that may be associated with an increased risk for potentially harmful mutations in breast cancer susceptibility genes (BRCA1 or BRCA2). Women with positive screening results should receive genetic counseling and, if indicated after counseling, BRCA testing.
Women Whose Family History is not Associated with an Increased Risk
The USPSTF recommends against routine genetic counseling or BRCA testing for women whose family history is not associated with an increased risk for potentially harmful mutations in the BRCA1 or BRCA2 genes.
Final Recommendation Statement: BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing. U.S. Preventive Services Task Force. December 2013.

Contact Your Insurance Company via Email or Phone

The first step in getting your denied claim approved is simply contacting your insurance company. There is a small chance that they will be reasonable and admit they made a mistake, saving your time in filing a formal appeal. As soon as you find out that your medical insurance company denied your claim, send them an email through the contact form on their website (there may be a link to click to find this on the Explanation of Benefits page) or call a customer service phone number for the company. You will likely get some generic response telling you that the service isn’t covered under your plan. See if you can find out exactly why they denied your claim. This information may help you to build a case when you file your formal appeal.

I went about this by sending an email to my insurance company via their online contact form. An insurance representative then replied to tell me that these benefits do not apply to my plan. This didn't sound right to me, so I followed up with my genetic counselor, who said that it should have been covered. I had already received a letter from the insurance company stating that the test was approved based on medical necessity before they decided to deny the coverage.

Follow up with your doctor or genetic counselor. They may be able to help you to deal with the insurance company.
Follow up with your doctor or genetic counselor. They may be able to help you to deal with the insurance company. | Source

Follow Up with Your Doctor and/or Genetic Counselor

Next, you will want to follow up with the doctor or genetic counselor who ordered your blood test. They may need to recode the test so that it is covered under your particular insurance plan. One of the main reasons that services that should have been covered get denied are simple coding errors. Simply having your doctor resubmit some paperwork may be enough to get your test covered (this may work for any medical claims that your insurance tries to deny, not just this particular test).

Your genetic counselor or doctor may also be able to submit additional information or documentation showing the medical necessity of this testing for you if your claim was denied because of lack of medical necessity. If this is the case, it could have simply been a case of paperwork that didn’t get submitted with the initial claim. This may include documentation showing your family medical history.

I'm not entirely sure what my genetic counselor did on her end, but I made sure she was aware of what was going on with my insurance company. I'm guessing there was likely additional paperwork involved.

BRCA mutations account for a significant number of breast and ovarian cancer diagnoses.
BRCA mutations account for a significant number of breast and ovarian cancer diagnoses. | Source

File a Formal Appeal

If your initial contact with your insurance company doesn’t yield results (which it likely won’t, in all honesty), you will have to send a formal appeal letter asking them to reconsider their decision. Luckily, FORCE (Facing Our Risk of Cancer Empowered – a wonderful nonprofit organization that provides resources for women who are at increased risk of breast and ovarian cancers) has already done most of the work for you. From FORCE’s Health Insurance Appeals page, download the Word doc file called “Genetic counseling and BRCA testing,” and edit the information in this prewritten letter to reflect your personal information. Print out the customized letter, being sure to include the “Exhibit A” attachment included with the downloadable letter. This attachment outlines the USPSTF guidelines for who should have this test, and why. FORCE made this very easy. All I had to do was edit the document to include my own information, print it out, and mail it in.

Eventually, I received an email that a new Explanation of Benefits was available, and the claim for the genetic testing was paid for in full by Medical Mutual. I received a letter that they had reprocessed the claim shortly after.

In addition to the appeal letter for genetic counseling and testing, FORCE has prepared appeal letter templates for several other specific screening, diagnostic, and treatment procedures that can be downloaded from their website. If your genetic test comes back positive, you will also want to bookmark that page from the FORCE website to come back to later, just in case your insurance company tries the same thing with any future, more expensive, BRCA-related claims.

I have since changed insurance providers, so hopefully I won't need these files, but I have bookmarked the page just in case.

An illustration of how the BRCA genes may be inherited. Documenting your family medical history is important when seeking genetic counseling and testing.
An illustration of how the BRCA genes may be inherited. Documenting your family medical history is important when seeking genetic counseling and testing. | Source

If Your Claim is Still Denied, File an External Appeal

Luckily in this case, the insurance company eventually covered the test, which they should have done in the first place.

If you find yourself in a situation where they still deny coverage for your genetic testing (or any other service or procedure you may be appealing), you may need to file an external appeal with your state’s external medical review program. In an external appeal, an independent group of physicians and other medical professionals will review your claim and decide if your insurance company is required to pay for your claim. While the rules for this type of external review vary by state, most states allow it in instances where a claim was denied because the insurer claimed it wasn’t medically necessary or if it was denied due to being an experimental or investigational procedure. You will need to contact your plan administrate or state insurance commissioner to find out how to begin an external appeal for your particular situation.

Hopefully I won't have to deal with this headache again for any insurance claims for screening services.

You have the right to know what's in your DNA, especially if you have a family history of hereditary diseases.
You have the right to know what's in your DNA, especially if you have a family history of hereditary diseases. | Source

Who is Entitled to Genetic Testing for BRCA 1 and BRCA 2 Mutations?

As stated above, the Affordable Care Act requires women who meet certain guidelines set by the USPSTF to have access to this genetic test at no out-of-pocket cost.

According to the Cleveland Clinic, women who meet the following criteria should consider making an appointment:

  • Cancer diagnosed at an early age [in self or in close relatives] (i.e., breast or colon cancer diagnosed before 50)
  • Several generations of family members affected by cancer
  • Multiple primary cancers in one individual (i.e., breast and ovarian cancer or breast cancer in both breasts)
  • Ashkenazi (Eastern European) Jewish ancestry and breast or ovarian cancer
  • Identified genetic mutation in the family (i.e., relatives of a known BRCA1/2 gene mutation carrier)
  • Colon polyps (10 or more)
  • Rare tumors (i.e., male breast cancer, paraganglioma, medullary thyroid cancer)

Source: Cleveland Clinic Genomic Medicine Institute

Essentially, if your doctor or genetic counselor ordered the test for you, it is because you meet these criteria, and your insurance must cover it. If they reject your claim, you are entitled to fight their decision until they reverse their decision.

Note: There are certain at-home tests to check for these mutations available on the market now, but insurance likely won’t cover these. You are only guaranteed coverage if you meet the requirements to have the “official” test done in a clinical setting. If you use an at-home option and it comes back positive, your doctor will still likely order the test to be redone in a clinical setting before referring you to specialists to begin surveillance or preventative procedures. I already knew about my mutation from 23andMe, but I still needed the official test before the Cleveland Clinic would let me start early surveillance screenings.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Questions & Answers

    © 2018 Jennifer Wilber


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      • Pamela99 profile image

        Pamela Oglesby 

        6 weeks ago from Sunny Florida

        This is an excellent article for those that have been denied the genetic testing. I have a friend who had breast cancer, and she had done a great deal of genetic research. While she had to have surgery, 3 of the people she contacted from her genetic reseach. found cancer very early thanks to this testing. It is essential for some people.


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