Blog Archives

Preparing for Passover- the genetics edition

matza clipartAs everyone else in the Jewish world is gearing up for Passover by cleaning, cooking, and planning their Seders, I am thinking about how to best convince you to use the opportunity of a holiday to discuss your family health history!

Hopefully, I no longer need to convince you that gathering information about your family medical history is a worthwhile activity, but If I do, I will remind you, that far better than any genetic test, your family health history can help you and your healthcare providers determine what medical issues you are at risk for, and subsequently, how to best care for you.

Almost a year ago, we told you about a great new resource to help you start the conversation specifically related to histories of breast cancer. You can learn more at http://www.treeoflifebrca.org/

You can also use this family history tool created by the Surgeon General, or these guidelines to learn what questions to ask, and how to take your own family history. Some additional instructions or family history guides can be found on the NSGC website here.

We know that discussing your family medical history may feel like an uncomfortable and nosy task, but your family medical history is part of your heritage and has major implications for your own health, and the health of your family members.

Wishing you a happy and healthy Passover, from the Program for Jewish Genetic Health!!

Who You Gonna Call?

genetics bat phoneHere at the Program for Jewish Genetic Health, we do not have a formal “genetics hotline”, but we get more than our fair share of phone calls with people asking for direction or advice related to genetics and genetic testing issues in their families. We get to hear from people from all over the world and are often surprised and intrigued at how many new and interesting questions come up, including questions related to shidduchim (matchmaking and dating), genetic testing and halacha (Jewish law), and referrals to genetics specialists.  While we try our best to provide a sympathetic ear and help as best we can, sometimes my compassion gets stretched to the limit. Since I believe so strongly in the utility of genetic counseling, I find it hard to keep my cool when the caller tries to convince me that they know better or that they can navigate the genetics scene by themselves (because, really, if he/she could, why would they be calling me for help?).

Here is one representative example of a call we have fielded:

Caller: “My child had this genetic testing done, and now we’re trying to figure out how to test ourselves and what the next steps are.”

Ok. Sounds reasonable.

Me: “Who did the genetic testing for your child?”

Caller: “Our pediatrician.”

 Not ideal, but it was ordered by a physician. Let’s get a bit more information so I can figure out the next best steps.

Me: “Are you going to meet with a genetic counselor or geneticist?”

Caller: “No, we haven’t gotten that far yet.”

Hmmm ok.

Me: “How did your pediatrician decide to order that test?”

Caller: “We asked him to write the prescription, so he did, and we brought it to the lab and had the test done.”

Me: “How did you guys come up with the idea to do that genetic test?”

Caller: “Well, my child has XYZ issue and we’ve been looking into nutritional therapies, and this specific test was recommended by a member of a wellness nutrition group on Facebook..”

……..    …………   !?!?!?!?!?!?!?!?!?!?

Especially with all the hype out there about genetics and the future of medicine, it is totally understandable for parents to turn to genetics and genetic testing to try and better understand medical issues in their families and figure out more effective treatments. And in many areas of genetics, we are actually very good at doing just that! However, the DIY approach may not be the best approach, especially when the genetic testing needed is more complex and may require testing multiple genes.

Trained genetic counselors and geneticists are here for a reason! We are your friends! We are your guides to the big wide world of genetics and genetic testing. Genetic counselors are actually trained to look at your personal medical and family history and determine which genetic tests are most appropriate, coordinate testing, work through insurance coverage issues, and then explain the results when they come back. That is our WHOLE job (ok, fine, genetic counselors often do much more than this). PLEASE USE US AS A RESOURCE!  (We are here to help healthcare providers and patients alike!)

In the end, I just felt bad for this family. The parents were clearly trying to figure out the best way to care for their child- but they were trying to do it alone, without the guidance of trained genetics professionals who could have helped guide them to the right tests, and spared them some anxiety and worry in the process.

As genetics becomes further integrated into medical care, the need for access to trained professionals who can help interpret and incorporate genetic testing and genetic testing results into care continues to increase.  There are more than 4,000 certified genetic counselors in the U.S., and our numbers and impact continue to grow! Genetic counselors are your best resource to navigate the genetic testing maze which currently exists for the public, but we can only help if you involve us in the process.

You can find a local genetic counselor by visiting www.NSGC.org and using the “Find a Genetic Counselor” tool.

 

Mental Illness Awareness Week and New Lesson!

MIAW-sticker-circle-2.5With the support of the Jewish Federation of Western Connecticut, we are grateful to be able to launch our newest lesson on MyJewishGeneticHealth.com addressing issues of mental health and mental illness in the Jewish community during Mental Illness Awareness Week. This lesson has been many months (and even years) in the making, and here’s why.

Since we launched MyJewishGeneticHealth.com back in May of 2013, we began getting requests to address mental illness in the Jewish community. While we had identified mental illness as an important issue to tackle, it was honestly a bit daunting, and we wanted to get the lesson right. Month after month, we would opt to develop other lessons, since we weren’t quite sure about how to approach mental illness on our online education platform. However, whenever we came across a particularly striking article or useful resource on the topic, we filed it away, hoping that it would come in handy once we were ready to prepare our mental illness lesson.  And the requests kept coming in.

At first, we tried identifying an expert lecturer who could do it all. We wanted it to be a person who could approach mental illness in a sensitive and community-oriented way, yet still speak about the hereditary components to mental illness. Finding such a person felt almost impossible. We finally realized that we didn’t need just one person, but similar to someone suffering from mental illness, we needed a team. So we changed up our model, and were able to identify three different expert lecturers to approach mental illness from different perspectives: the psychologist/community perspective, the genetic counselor/hereditary perspective, and the mental illness advocate/personal perspective. We really hope that listening to their videos is informative, eye-opening, and inspiring.

And that repository of articles and resources? Oh we went through that too. Days were spent poring over articles, listening to personal experiences, identifying and speaking to support groups, and becoming entrenched in the world of mental illness. It is heavy, and yet, unbelievably important.

About 1 in 5 (20% of) adults in the U.S. experience a mental illness. These numbers are not anticipated to be much different in the Jewish community. Mental illness is VERY common, and unfortunately, there is a still great deal of stigma in the Jewish community associated with mental illness, stemming from concerns about marriageability. This lesson is not just for those who suffer from, or have suffered from mental illness, it is for the whole community. Chances are, even if no one in your family has suffered from mental illness, one of your friends, neighbors, or co-workers has. As with most things, a little bit of education, awareness, and understanding can go a long way. Ignoring the issue doesn’t make it go away, it just means that as a community we are not addressing it, and people aren’t getting the help that they need.

We decided to launch this lesson during Mental Illness Awareness Week and around World Mental Health Day, which this year, falls on the heels of the Jewish holiday season. Preparing this lesson has given us at the Program for Jewish Genetic Health a great deal of perspective and has made us take pause to consider how deeply some in our community are suffering.  Our hope is that this lesson will stick with all of us as we exit this season of introspection, and that there will be takeaway lessons that can have an impact on individuals, families and the greater Jewish community.

Making Histories: Tree of Life, A BRCA Conversation

Guest Blogger, Sherry Kabran, writes about her amazing new project, Tree of Life, A BRCA Conversation http://www.treeoflifebrca.org:

tree of lifeWhile in mourning, some try to cope with their emotions and loss by writing journals, going to support groups, blogging, running races, attending daily minyans, even starting cancer oriented organizations.  The women in my family found their own ways to accept the loss of Carolyn Raizes Davis, mother and sister, but together we created Tree of Life:  a BRCA Conversation guide for Passover, Shabbat and Rosh Chodesh.

Each guide helps Jews of Ashkenazi descent understand basic facts about hereditary cancer risks from BReast CAncer gene mutations.  The highlighted message is that every family should create a family medical tree, look for red flags and consider genetic testing, if appropriate.  The guides provide a Jewish setting in which to start a serious conversation that might save the 1 in 40 Jews of Ashkenazi descent, who unknowingly has a BRCA gene mutation.

This family project was our suggestion to FORCE (Facing Our Risk of Cancer Empowered) to further reach out to the Jewish community with a teaching tool.  How could we not try to help?  Carolyn passionately believed in teaching the community about BRCA gene mutation risks and worked closely with The Methodist Hospital doctors in Houston, Texas, to develop an educational program.  Her legacy was EDUCATE anyone who will listen!

My younger sister, Francine, and I decided Passover was an ideal time to have a multi-generational discussion about gathering medical histories.  We know about oranges and coffee beans on the Seder plate.  How about a tree branch, to represent the importance of medical family trees?  Each guide provides: an introduction to start the conversation, a BRCA branch symbol of family trees, a choice of videos, a medical history form to gather health information, Debbie Friedman’s Mi Sheberach prayer and suggestions for next steps.

Of course I googled “Passover & family histories” and found Chani’s post suggesting families do just that, at the Seder table!  Her blog is incredibly informative and thought provoking.  Plus, she told me to take the conversation guide idea and run with it.  Thank you, Chani, for your encouragement.

The Davis/Raizes/Kabran family hopes readers will explore the guides (http://www.treeoflifebrca.org) and decide to use one during family gatherings.  Please tell us about the experience. Also, help us save lives by sharing the website on Facebook and forwarding the free downloadable guides to family members, friends and community leaders (Jewish organizations are beginning to offer BRCA educational programs).  Your suggestions for use of the guides and ways to publicize would be greatly appreciated.

Thank you,

Sherry Kabran:   treeoflifebrca@gmail.com

A Plea to Science Writers

newspaperI read a lot of articles. Being that I work in the field of genetics, not only do I have a Google alert which sends me articles relevant to my work, I also have the benefit of my family and friends sending me articles which they see as relevant to my work. Sometimes I get the same article sent to me 3 or 4 times, because when someone comes across an article even peripherally related to genetics, they think of me, and send it along (Thanks, Dad!). On occasion I even speak to reporters who are in the position of writing some of these articles, and I try to educate them as best I can, and give them the necessary information so that they can convey it to their readership. So for all of those writers out there, those I’ve spoken to, and those I haven’t, I have a very important message for you:

You matter. Your job is so unimaginably important, you may not even realize it. You are presenting often complex scientific concepts to the community. For some, reading your article is the first time that they have even heard about the topic or the first time they have started to think critically about it. This exposure is your one opportunity, and it’s our (the medical community’s) opportunity too. Most people are not proficient in the sciences, and particularly in the realm of genetics, and much education is needed as genetics and genetic technologies become increasingly relevant in our day to day lives.  Individuals will read your article and form opinions about how your topic affects their life, based on what you write! For this reason, it is SO important that the information you present is both accurate and clear.

This may sound obvious, but sadly, I come across many articles, specifically those written about genetics, where there are glaring issues; scientific terms used incorrectly, statements made which are false, and quotes misused. As a genetic counselor, I read these articles and the mistakes drive me nuts. However, it’s the unsuspecting community who suffers from these inaccuracies, as they don’t know any better but to accept it at face value and believe what they are reading; what YOU are writing. Sometimes, when you try and “simplify” it, what you end up doing is totally missing the boat, and your work ends up misinforming the public, rather than educating them.

So, to you, science writers, please be responsible with your valuable work. Many members of the scientific community (granted, I can’t speak for everyone!) would much rather proofread your writing for scientific accuracy than see another article published which sets us back in our efforts to continue to educate the public. Use us as a resource. It will help us all in the long run, improve the accuracy of your work, and increase public access to reliable information about science, medicine, and genetics.

BRCA testing for all Jews? BRCA testing for everyone?

news 2Co-written by PJGH genetic counselors Estie Rose and Chani Wiesman

This week was a very busy and exciting week for us at the Program for Jewish Genetic Health (PJGH)!  Late last week, the New York Times published two articles describing the findings and ramifications of published research conducted by renowned geneticists in the US and Israel. The first article describes a study done by Dr. Ephrat Levy-Lahad at Shaare Zedek hospital, who concluded that ALL Ashkenazi (Eastern European) Jewish individuals should be tested for BRCA mutations—not just those individuals with family histories of breast and/or ovarian cancers. Since about 1 in 40 Ashkenazis will carry a cancer-predisposing BRCA mutation, genetic testing was suggested for everyone at a young age.  Then, in case a mutation is present, it is better to find out at a preventable stage.

The second article quotes the scientist who discovered BRCA’s association with cancer and who partnered on the Israeli study, Dr. Mary –Claire King. Dr. King’s statements took this one step further, as she called for screening all American woman 30 or older regardless of race or ethnic background—not just Ashkenazis!

Our inboxes have been flooded and the phones have been ringing all week with inquires about these articles.  So how do we feel about these statements? If you have been listening to the news, the media made it sound like these are new ‘guidelines’ or ‘recommendations,’ but we prefer the word ‘opinions.’ These opinions come from a good place, where people want to prevent illness, but they are also somewhat controversial and may be considered by some to be extreme.

For starters, we think it is important to take a step back and spell out what’s so important about BRCA in the Jewish community.  After that, we will get to the “PJGH response” to these studies.

We have spoken about BRCA many (many, many!) times in this blog, but we never actually told you why it is related to the Jewish community (our oversight!). BRCA1 and BRCA2 mutations (mistakes in the genes) cause a significantly increased risk for breast and ovarian cancer, as well as some other cancers.  Just like there are certain mutations for other diseases that are more common in the Ashkenazi Jewish population, there are three specific mutations in the BRCA genes that are more commonly found in the Ashkenazi Jewish population. Numerous studies have found that between 1 in 40 and 1 in 100 Ashkenazi Jews will carry one of those three BRCA mutations and are therefore likely at an increased risk for cancer. If someone is Ashkenazi Jewish and has a BRCA mutation, the vast majority of the time, it is one of those three mutations. Furthermore, that 1 in 40 – 1 in 100 carrier frequency holds true regardless of personal or family history of cancer. So if you take any random group of 100 Ashkenazi Jews, 1 or 2 of them is likely to carry a BRCA mutation, even if he/she doesn’t have a personal or family history of cancer.

This is a big deal, and it’s a huge community issue.

So what is our current response?

Insurance Coverage and Genetic Testing: Part 3

Image courtesy of http://401kcalculator.org

Image courtesy of http://401kcalculator.org

Before I move on to other (and potentially more interesting) topics to blog about, there are just a few more important things related to genetic testing insurance coverage which are worthwhile discussing. Remember that this insurance terminology dictionary should be helpful for other topics which I don’t discuss here.

I’ve mentioned before how expensive genetic testing can be. Depending on the test, and what technology is being used, each separate genetic test could cost up to a few thousand dollars. When multiple genetic tests are being done, this can rapidly add up. Your insurance company knows this and therefore, has very specific criteria which govern when they will cover genetic testing.

This post is mostly about insurance preauthorization (“pre-auth”). This is otherwise known as a prior authorization, precertification, or predetermination. Different insurance companies may have different names for this process, but the gist is usually the same. This is a process that you or your healthcare provider initiates with your insurance company whereby you ask them to determine if they will pay for a specific service (in our case, genetic testing). Often times, your insurance company will require that you go through the preauthorization process before you pursue genetic testing.

So what is involved in a preauthorization? The insurance company will request that you give them a lot of information about the genetic testing which is being done.  They will want the name of the lab which is actually performing your testing, the name of the doctor ordering your testing, and all of the applicable identification numbers, certification numbers, and contact information associated with your doctor, and the genetics lab.

Then, they’ll want to know where the genetic test is being done and exactly which test will be ordered. It is important to understand that when you do a pre-auth, you cannot rely on the insurance agent involved in your case to know about each and every test that exists. Just saying “a genetic test” or even “a genetic test for cystic fibrosis” will not be enough information for them. This is because there may be multiple genetic tests available for cystic fibrosis, each with its own testing methodology and precision (and therefore price!). Each genetic test actually had a code (or sometimes multiple codes) which identifies it to the insurance company and explains to them what exactly is being done. These codes are called CPT codes and you can get the precise CPT codes you need from the lab performing the test.

The next piece of information the insurance company needs is the indication for your testing, which is also provided in the form of a code called an ICD-9 code. ICD-9 codes vary from broad to specific; some examples include “family history of breast cancer” as an indication for BRCA testing and “café au lait spots” as the reason for ordering genetic testing for neurofibromatosis type 1. ICD-9 codes are important to the insurance companies because they are used to determine if the genetic testing is appropriate for you. You (or your doctor) cannot order a genetic test just because you want it done, and expect your insurance to cover it.

Finally, once this preauthorization has been started, your insurance company will want clinical information. This may be in the form of medical records, imaging studies, or pedigrees, or they may request that a letter of medical necessity be submitted by your healthcare provider. A letter of medical necessity is basically a document written by your healthcare provider that explains their argument for why the insurance company should pay for your testing. Often times it not only includes information about your medical history, but also information about how the testing will be helpful for your future care, and specifically what might change in your medical care based on this testing. It might even cite recent medical literature where genetic testing has made a major difference in situations similar to yours.

The insurance preauthorization process can take anywhere from weeks to months, depending on your insurance company. And even if the preauthorization is approved, it is never a guarantee that your testing will be covered. If the preauthorization is “denied” there is often an appeals process that you can go through to try and change their minds.

So you can see that the process is quite complex and time consuming. Physicians and genetic counselors have a lot of experience with pre-auths, so do not be shy to ask for help if you are overwhelmed with the process!

Insurance Coverage and Genetic Testing: Part 2

image courtesy of www.stockmonkeys.com

(image courtesy of http://www.stockmonkeys.com)

“My insurance said that the testing would be covered, so how did I end up getting a bill?”

Although I alluded to some of these issues in a previous post on the subject, I figured it would be worthwhile to spend a bit more time discussing some of the ins and outs related to health insurance coverage for genetic testing and genetic services. A Carnegie Mellon University study published in September 2013 found that 86 percent of Americans between the ages of 25 and 64 didn’t understand the fundamental concepts of any kind of health insurance. While I won’t be explaining all concepts related to health insurance, an insurance terminology dictionary can be helpful if you have additional questions which I don’t address here. And remember, insurance companies tend to have many different plans with different terms, so just because your plan is from Aetna or Cigna, you might have different benefits and financial responsibilities than others who use the same insurance company.

When it comes to your health insurance coverage, even though you pay monthly premiums, (ie. your monthly cost to have health insurance), you may still have other financial responsibilities whenever you receive medical services. Some of the most common financial responsibilities are co-pays, coinsurance, and deductibles.

The co-pay is typically the most understood concept, as it is fairly straightforward. Whenever you have a doctor’s visit or other medical service provided, you pay an amount which was previously set by your insurance company. This is usually somewhere between $10 – $50 depending on your specific policy and the type of services being provided.

However, some insurance companies expect you to pay a certain percentage of each visit cost. This is called a co-insurance, and it is typically represented as a percentage, as in, your co-insurance is 20%, which would mean that when you go to the doctor or have other medical services provided, you are responsible to pay 20% of what those services cost, while your insurance will cover the other 80%. Again, the specific percentage co-insurance that you are responsible for will vary based on your insurance company and plan.

Your deductible is basically the amount of money you need to pay towards your medical care before your insurance starts paying. This is often a very confusing concept for people to understand. So basically, you’ve just paid $500 per month for health insurance (for example) and you go to the doctor’s office, and you get a bill for the full cost of the visit! Isn’t that why you paid all that money for health insurance, so that the health insurance would pay for your doctor visits?? The answer is obviously yes, however, depending on your insurance policy, you may have a deductible and sometimes, they can be very high! If for example your deductible is $2,000, that means that you need to pay out of pocket, for the first $2,000 of your medical care (doctors visits, lab tests, etc). Once you pay that $2,000, then your insurance will start paying for your medical services, under the terms of your plan, ie- you may need to pay the $2,000 towards your own medical care, and then once your deductible is met, since you have a 20% co-insurance, so your insurance company will cover only 80% of the cost of services you receive.

So when you come in for genetic testing, and you call your insurance company to find out if your testing will be covered, they might tell you that the testing is a covered service, as in, yes, your insurance covers it in general, but they aren’t necessarily explaining how much you may be responsible for because of your deductible, co-insurance, and co-pays.  If you have not yet met your deductible, and your deductible is $5,000, you might get a bill for all of the services provided up until $5,000. If you’ve met your deductible, or you don’t have one, but your co-insurance is 30%, you might still get a hefty bill for your genetic testing, because as I explained before, genetic testing is unfortunately very expensive.

If you are having genetic testing (or really any medical services), it is worthwhile to speak to your insurance company and ask them about the specific terms of your plan. Armed with this new knowledge about co-pays, co-insurance, and deductibles, you are now better informed and capable of having a good understanding about your financial responsibility for genetic testing. Trust me, your medical providers do not want you to end up with large and unexpected bills either.

The PJGH goes camping

camp pjgh banner

As a scientist, I am used to running experiments, and, par for the course, oftentimes these experiments fail. I am pleased to blog here about an experiment we ran this past week at Einstein that proved to be a huge success! Specifically, the Program for Jewish Genetic Health (PJGH) ran its first ever Jewish Genetics Bootcamp, and for this endeavor I temporarily changed my role from Program Director to Camp (co-)Director (along with our two amazing PJGH genetic counselors Chani and Estie).

The camp was envisioned as a mechanism to introduce high school and college students who have expressed future career interests in genetics to the field (from the PJGH perspective). While students in this category sometimes intern with us or alternatively are mentored by us in more informal ways, unfortunately we cannot accommodate all requests for this. Camp, or more appropriately bootcamp (keep reading this blog…), was our three-day solution to this problem.

We decided to keep the inaugural group of campers small, since we thought this would facilitate interactions between the campers and the staff. Fortunately, the campers who joined proved to be outgoing, inquisitive, and insightful—which led to lots of questions, discussion, and debate. We even picked up 2 crashers!—undergrads who happened to be on the Einstein campus for summer research programs.

Camp PJGH centered around half-day sessions, presented by Chani and Estie, on three main topics: clinical genetics/genetic testing, Jewish genetic diseases that can affect offspring of carrier couples (e.g., Tay-Sachs and Familial Dysautonomia), and inherited cancer predisposition syndromes (e.g., hereditary breast and ovarian cancer syndrome due to BRCA). Another more future-looking session was entitled “Expanding panels, expanding ancestries, and expanding technologies.”

Aside from these formal sessions, we also exposed the campers to a variety of genetics professionals—a genetic counselor, a PhD scientist, an MD reproductive geneticist, an MD pediatric geneticist, and an MD fertility specialist. The presenters reviewed their training paths, shared what their typical workdays look like, and divulged their most/least favorite aspects of their jobs. The campers were intrigued by the fact that many of us have had “turning points” that have resulted in the refocusing of career paths. For me in particular, my transitions have been from research scientist to clinical laboratory scientific director to PJGH program director. When describing the last transition, I was really able to convey how my journey has led me to a remarkable endpoint where I am able combine my scientific background with the service of the Jewish community.

Finally, during the camp’s self-study sessions, the campers were guided through current newspaper articles that were a little more controversial in nature—addressing questions such as should healthy adults (or even healthy babies!) undergo whole genome sequencing, or should all Ashkenazi Jewish individuals be tested for the common BRCA mutations. And, for night activity (okay, it was really homework), the campers were encouraged to visit selected websites including our very own online learning platform, and also were provided with some on-theme book and movie recommendations.

And the experimental result and conclusions are already in. In the campers’ anonymous post-camp evaluations, camp was deemed a big hit! One camper even remarked “it made me realize how much awareness needs to be raised, and how much I want to be involved with genetics in the future.”

I am looking forward to a reunion with season 1 campers, and to planning for season 2!

P.S. And yes, we most definitely had s’mores. But there were no tents and it wasn’t a sleepover camp (although one camper remarked that next time we run a bootcamp, it should be longer than 3 days!)

 

Insurance Coverage and Genetic Testing: Part 1

(image courtesy of www.stockmonkeys.com)

(image courtesy of www.stockmonkeys.com)

As boring as it may seem, I actually get asked this question ALL THE TIME. Both by patients and also while giving talks in the community. People get very excited about the possibility of using genetic testing in their own lives, but wonder, how affordable is it really?

Here are a few things that I’ve learned over the years, which may help you navigate that big wide world of insurance coverage for genetic testing. (Use this helpful insurance terminology dictionary to help you through the post!)

Most of the time, genetic testing is treated like any other lab test. When the lab bills your insurance company, most of the time the genetic testing is covered the same way other lab tests would be covered. You may be responsible for your co-insurance and deductible. This differs by insurance policy! You should find out what your insurance’s policy is! Now, when your doctor checks your cholesterol, if that test costs $60, even if you are responsible for 30% of the cost, your “out of pocket” charge is not so significant. Genetic testing on average costs anywhere from a few hundred dollars per test, to thousands of dollars per test. So even if your insurance “covers” the testing, your co-insurance or deductible may leave you responsible for a large amount of money.

Now, there are a few exceptions to this:

Exception 1: Your insurance has a policy whereby it does not cover ANY genetic testing.  This is not very common, but some insurance policies state straight out, that they do not cover ANY genetic testing under any circumstances. I have seen these policies before. If you are considering undergoing genetic testing, you should call your insurance company and ask if they have any specific policies about genetic testing. Typically they can direct you to the policy on their website so that you can read through it. Nowadays, as genetic testing becomes more commonplace, more insurance companies are developing genetic testing policies about what they will and will not cover, so it is worthwhile to look into this for your specific insurance plan!

Exception 2: Your insurance will only cover genetic testing if the correct “indication” or “code” is provided. Genetic testing is conducted in a medical model (even if it doesn’t always seem that way!) This means that it is ordered by a medical professional because of a certain indication. So in order for your insurance company to actually agree to covering the genetic test, the correct indication need be provided! For example, if you want to have genetic testing for Marfan syndrome, but you don’t have any of the signs or symptoms of this genetic disease, your insurance company will likely not cover the testing because there is no “indication” for it. For specific tests you may need to meet the “testing criteria” in order for your insurance company to cover the test.

Exception 3: Your insurance will only cover genetic testing if it is done at an “in network lab” Many insurance companies want you to use specific labs when you have your testing done. This may be easy for having your cholesterol checked (as that is a common test) however because genetic tests are unique, there may only be one or two labs in the country who do the testing that you need. So your insurance might cover your testing if it was done at Lab A, but Lab A doesn’t offer that test, it is only offered at Lab Q which is both out of state, and out of your insurance’s network.

Unless you’ve had to muddle through insurance policies and medical bills, a lot of this may seem new to you. The truth is, they don’t even teach us this stuff in school! Insurance issues tend to be one of those things you learn “on the job” as a genetic counselor (and one of the things you keep on learning as the field changes). It is definitely worthwhile for you to research your own health insurance plan’s benefits and your financial responsibilities, so you don’t have any surprises when it comes to your medical bills and insurance coverage.

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