In a previous installment of this blog, we tackled some insurance basics. Now let’s apply those basics specifically to genetic testing. We will discuss common questions to ask your insurance company and your ordering healthcare provider. We will also address common issues that arise while attempting to pursue genetic screening and testing.

Firstly, for the purposes of this blog entry, genetic testing and screening is defined as any laboratory test which analyzes genetic information (DNA) by molecular and/or cytogenetic methodologies. In other words, laboratory tests which evaluate for the presence of various mutations (gene changes) or chromosome abnormalities. Examples of these types of tests include but are not limited to: genetic carrier screening for cystic fibrosis; genetic carrier screening for spinal muscular atrophy; targeted mutation analysis for a familial mutation in the BRCA1 gene; sequence analysis (evaluation of the entire length or nearly the entire length of a gene for mutations) of the five most common genes associated with a hereditary cancer disorder called Lynch syndrome; or repeat number analysis of the HTT gene (responsible for causing Huntington disease). As insurances often consider various prenatal screens for chromosome abnormalities (e.g., first trimester screening) as distinct and separate from other types of genetic testing, these screens will not be covered in this particular blog entry.

As genetic testing has become more prevalent and commonplace, some insurances have a specific medical benefit to address coverage for genetic testing.  If your insurance does not have a specific genetic testing benefit, then genetic testing most often will fall under your medical benefits, usually laboratory services. One of the first steps to determining what type of coverage you have for genetic testing is to determine where this benefit falls. Although different plans have widely variable levels of coverage, you are more likely to get better coverage if your plan has a specific genetic testing benefit as this is an indication that your health insurance provider recognizes that genetic testing is now an integral part of our healthcare.

After you have determined which benefit includes genetic testing and genetic screening, there are a few additional basic questions that remain before you can truly dig into the details of insurance coverage. Answers to these questions will give you a basic understanding and general knowledge of your potential out-of-pocket costs.  Here are some sample questions that you should ask your insurance prior to your genetic testing:

1.      Does genetic testing require prior authorization before it can be performed?

a.      Do all genetic tests require prior authorization or only specific tests?

b.      Who submits the prior authorization – myself or my healthcare provider?

2.      Do I have an individual or family deductible that would need to be met prior to my genetic testing being covered?  If you have an applicable deductible:

a.      How much is my deductible?

b.      Is there a difference between in-network and out-of-network laboratories?

c.       When does my deductible reset?

d.      How much of my applicable deductible have I met already?

3.      Do I have coinsurance for genetic testing?  If you have coinsurance:

a.      What is the percentage of the genetic testing bill for which I will be responsible?

b.      Is there a difference between in-network and out-of-network laboratories?

4.      Do I have a copay for genetic testing?  If you have a copay:

a.      What is my copay for genetic testing?

b.      Is there a difference between in-network and out-of-network laboratories?

After you gather answers to the above questions, you are ready to investigate more specific information regarding the coverage of a particular genetic test that has been recommended for you. You will likely need to contact your healthcare provider (specifically your genetic counselor) or the laboratory at which your test will be performed to get the details needed to understand your insurance coverage. Your genetic counselor or the laboratory may be able to supply additional information that you can provide this information to your insurance company. The two most important pieces of information to gather are the appropriate CPT codes and the applicable ICD-10-CM diagnosis codes under which your testing will be billed. When provided with these two pieces of information, your insurance company should be able to provide a more accurate assessment of your coverage and potential out-of-pocket expenses.

To bill for laboratory tests and other services, CPT (current procedural terminology) codes are sent to your insurance. A CPT code tells your insurance what was completed or performed. For example, there are specific CPT codes for an acute illness-related office visit to your primary care physician versus a well-person visit. Additionally, each step of genetic testing, such as extracting your DNA from your sample and analyzing your DNA for mutations (genetic changes), has its own CPT code.

To demonstrate that you meet your insurance’s qualifications for coverage, ICD-10-CM (international classification of diseases) codes are sent with your testing. An ICD-10-CM code tells your insurance your reason for testing and why they should cover the testing. For example, an ICD-10-CM code would inform your insurance that you have a family history of breast cancer or that you carry a mutation for cystic fibrosis.

If your insurance provider informs you that prior authorization is needed for your genetic testing, this prior authorization must be completed before your insurance provider will consider paying for any expenses related to your genetic testing. A prior authorization, as the name implies, is a notification to your insurance company that specific healthcare services are required for your healthcare, such as genetic testing. For very common genetic tests, some insurance companies automatically approve prior authorization requests based on specific indications (reasons for testing). More frequently, a prior authorization request must be reviewed before a decision for approval or denial will be rendered. Many prior authorizations for genetic testing must also be accompanied by a letter of medical necessity, which is typically written and provided by your healthcare provider, to justify their request. It is very important to note: if your insurance requires prior authorization for genetic testing, and a prior authorization is not obtained prior to completion of the testing, your coverage will be denied.

Unfortunately, there are some insurances that still provide no coverage for genetic testing or genetic screening at all. If you determine that your insurance provider does not cover genetic testing or screening regardless of indication or type, do not despair. Many laboratories have reduced cost self-pay options to attempt to make genetic testing and genetic screening accessible to all. If your healthcare provider determines that genetic testing or genetic screening is necessary for your healthcare, ask them to help you determine which laboratories provide financial assistance in addition to high quality testing.

Now that you are equipped with some basic information about your insurance coverage and additional information specific to genetic testing, you and your genetic counselor can work together to determine the most appropriate laboratory for your testing and estimate your possible out-of-pocket costs.  Although your genetic counselor may not be able to answer all of your insurance questions, do not hesitate to discuss your concerns with her. You are on this journey together with your provider.