Category Archives: Chani’s posts

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.

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.

Running from your cancer family history

girl-running-away-clipart-frightened-man-running-clipartI recently came across a blog post by a friend of a friend. She was opening up about her recent diagnosis of cancer. The beginning of her blog was something along the lines of “I’ve been running from my family history of cancer for as long as I can remember. Knowing that all of these people in my family had been diagnosed, I just kept on waiting for the grim reaper to come and get me too. Now that I’ve been diagnosed, I guess I’m not running anymore…”

I’ve heard this sentiment time and time again, both from patients and from friends. People recognize that their family history of cancer plays a role in their own risk for cancer, and many people live with this shadow hanging over their heads. The waiting and the worrying, the fatalism of it all; the sentiment of ‘these people in my family died cancer, and I know I’m going to develop cancer too, and there’s nothing I’m going to do but sit, wait for it to happen, and try to put it out of my mind.’

I recognize that different people approach fears and anxieties in different ways, but this “wait and do nothing” approach drives me NUTS. If you are aware that you have a strong family history of cancer, there are many practical things that you can and should do, other than sticking your head in the sand. Some of these things might save your life.

  • Have regular annual visits with your primary doctor. This might be your primary care doctor (PCP) or family medicine doctor, or even gynecologist. Do not go to a doctor only once every 5 years when there is a problem. Tell your doctor if you have a family history of any medical issues. Routine preventive care can help you catch health problems before they become serious.
  • Engage in screening for the cancers that run in your family. Unfortunately, effective screening tests do not exist for certain cancers. However effective screening tests do exist for many other cancers, for example, breast cancer, colon cancer, and skin cancer, to name a few. Speak to your doctor (see #1) to find out if effective screening exists for the cancers in your family. The rule of thumb is that your cancer screening should begin 10 years earlier than the youngest case in your immediate family.
  • Stay away from tobacco. Stop smoking, and avoid second hand smoke. Smoking causes cancer. And for those who already may have a hereditary risk for cancer, smoking does not help you, my friend.
  • Consider meeting with a genetic counselor. A genetic counselor will review your family history and give you a sense if he or she thinks there may be a hereditary component to the cancer in your family. The genetic counselor will also discuss with you your genetic testing options. Finding out that you have a hereditary predisposition to cancer may provide you with a better plan for cancer screening, or risk reducing options, and will help identify other family members at risk of having the same issue. By engaging in genetic counseling, you are helping yourself and your relatives!

An example: If your mother, aunt, and brother all have been diagnosed with gastric cancer, you should be getting upper endoscopies annually, starting 10 years before the earliest cancer diagnosis. So you take my advice and you meet with a genetic counselor. The genetic counselor says that she thinks the cancer in your family may be caused by a rare hereditary cancer syndrome called Hereditary Diffuse Gastric Cancer. She recommends genetic testing for the CDH1 gene, and explains that if you in fact had a mutation in that gene, she would recommend that you speak with a GI specialist about having a prophylactic gastrectomy (removal of the stomach) since screening for gastric cancer has not been proven effective at identifying cancer at an early and treatable stage. ‘What???’ you say. ‘Remove my stomach? That sounds crazy! And so extreme!’

Perhaps, but this is how you continue to live a healthy life without the burden of stomach cancer looming.

Because in the end, you have two choices:

  • Run away from your family history and stick your head in the sand (not my favorite).
  • Turn around, face your fears, and address your cancer risk. To risk being redundant, that may be in the form of (1) finding a primary doctor and telling him or her about your family history, (2) asking your doctor to manage your screening regimen, (3) stepping up your screening regimen to be more frequent so that if you do develop cancer, you can catch it at an early and treatable stage, or (4) discussing other risk reducing strategies with your doctor to determine what makes most sense for you in light of your family history.

You do not need to die from cancer just because you have a family history of cancer. Your cancer risk exists, whether you chose to acknowledge it or not. Ignoring it does not actually make it disappear. It just takes away your ability to take any proactive steps to maximize your health and the health of your family.

The Case for Research Participation

research-participants-wanted-NEW-300x156As part of my training to become a genetic counselor, my graduate program had us participate in a Research Rotation. No, we didn’t sit behind microscopes and make scientific discoveries. A large part of this rotation was following around research assistants as they attempted to consent patients in a medical center to participate in a biobank. A biobank is basically a collection of DNA samples that can be accessed by multiple researchers in the institution. What was cool about this particular biobank is that  it was hooked up (in a deidentified way) to the participant’s medical record. So, researchers were able to see what medical issues developed over time, what interventions worked, etc. for this particular participant. It was a way that the researchers could have up to date clinical information in a secure and private way, without constantly bugging the research participant for an update on his/her medical history.

So, as a student, I tagged along as the research assistants attempted to recruit patients who were already getting their blood drawn for another reason, to just have one extra tube drawn, and consent for participation in the biobank. I was surprised by how many people said no. Some did not want to have an extra tube of blood taken. Some didn’t want anyone to have access to their medical information, even in a deidentified way, and some just didn’t want to participate in research altogether.

Even now, through my interaction with patients, I see the spectrum of how individuals view participating in research. I’ve had patients say, “Sure, why not?” when asked if they want to participate in research. I’ve had other patients even request that their samples be used for research, even if we are only conducting clinical testing. Then there are those that don’t trust the genetic research process and don’t want their samples or results getting in to the wrong hands. Especially when there is no direct benefit to them for participating, the choice is often to forgo participation.

Participating in research is always a personal choice, and one should never feel that they are being coerced to participate, However, I’d like to encourage you that if you are given the choice to participate in research, if participation is not a burden, then please consider doing so. This may be as simple as spending 10 minutes answering questions in Survey Monkey for a student’s thesis or dissertation research, or allowing a lab to use the remainder of your blood sample for deidentified research following a clinical test. Especially when it comes to genetic research, the only way that we will progress in our knowledge and understanding of the genetic basis of disease, genetic variation in different populations, and the effects of genetic awareness and education on the public, is if individuals from various populations participate in research. Your participation is necessary to grow the field of genetics, the understanding of our genomes, and the role of genetic testing in the public arena.

Breast Awareness and Breast Cancer Awareness Month

Breast_Cancer_Awareness_MonthA few weeks ago, I saw a woman for genetic counseling. She was in her early 60s, and had been diagnosed with breast cancer twice in the same breast. The first time was in her 30s, the second time was within the past few months. Before starting to review her family history, I asked her about her prior cancer diagnoses. This recent cancer diagnosis was identified on a routine mammogram, but her first diagnosis would have been before she started routine breast screening via mammography. “How did you find it?” I asked…

She then proceeded to tell me the following story: “Well, you see. I got this pamphlet in the mail with instructions on how to do a breast self exam. I had never done one before. And usually, I would throw these things out, but I figured, sure, why not? And I took the pamphlet with me into my bedroom, followed the instructions, and did a breast self exam. And I felt something. So I went to my doctor and told her that I had felt something in my breast. She said, “don’t tell me where you felt it, let me try to find it myself.” So she did a breast exam and she didn’t feel anything. So she had me show her where I felt it, and sure enough she said, ‘you know, I do feel something there. I’m sending you for a biopsy.’ And that’s how they found my first breast cancer. That pamphlet saved my life. I wouldn’t be around today if it wasn’t for that..”

In the last few years, there have been a number of controversies over the best route for breast screening. Should routine mammograms begin at age 40 or at age 50? Should women have clinical breast exams performed by their physician, and if so, how often? Should women perform self breast exams at all? As more research is being done in the realm of breast screening, different opinions have been emerging as to the efficacy of these different screening methods.

One of the interesting shifts has been away from the breast self exam in favor of breast self awareness. The idea behind breast self awareness is that a woman should be aware of how her breasts normally look and feel, so that she can report any changes to her doctor. This differs from the breast self exam, which is a structured procedure of how women should be evaluating their breasts on a regular basis. Many women feel uncomfortable doing a breast self exam, unsure of what they should be looking for. Research found that not only did breast self exams not reduce the number of deaths from breast cancer, but it actually increased the detection of non-cancerous lesions, which required further evaluation, such as a breast biopsy. This research has contributed to the change in recommendations away from self breast exams and toward self breast awareness.

But then I think about the countless stories that I have heard of women, including my patient, who found their own breast cancer by doing a breast self exam. I hear her words echoing back, “That pamphlet saved my life. I wouldn’t be around today if it wasn’t for that…” and I wonder how she would feel about the change in recommendations.

For those of us with friends or family members who have been diagnosed with breast cancer, or with personal diagnoses of breast cancer ourselves, National Breast Cancer Awareness Month can feel empowering, overwhelming, or even stifling. And with the statistic of 1 in 8 women developing breast cancer in the United States, breast cancer is a disease that should feel relevant, even if one does not have a “personal connection” so to speak. Perhaps for all those who don’t see the relevance, they can think of this October as Breast Awareness Month, and instead of focusing on this disease they can focus on the breast awareness which might someday save their lives.

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?

Genetic testing: A personal decision

right decisionAs a genetic counselor, I often get asked the dreaded question of “what would you do?” It might seem like there is one correct answer when it comes to the decision of whether or not to pursue genetic testing, but in reality, there is not. One’s decision about genetic testing (Should I pursue genetic testing at all? What type of genetic testing? How extensive should the genetic testing be? When should I pursue genetic testing?) is very dependent on one’s personal circumstances, past experiences, and attitudes.

For the past 5 years, I have consistently worked in a prenatal genetic counseling setting, among other specialty areas. Prenatal genetic counseling deals with genetic testing done during pregnancy for a variety of reasons. There are now many prenatal genetic tests which are out there and available to women during pregnancy. As a prenatal genetic counselor, I know the ins and outs of these tests like the back of my hand, have ordered and interpreted these tests for countless women and couples, and for some, I have advocated for the use of these tests, as they can often provide valuable and actionable information.

I am now almost 9 months pregnant, and even with all the knowledge I have about prenatal testing, genetic diseases, and various abnormalities which can be detected during pregnancy, my decision was to forego almost all of the genetic tests which are currently available, and instead, consistently remind myself that most babies are born healthy.

Even when additional genetic carrier screening became available in the middle of my pregnancy, I opted to wait to update my testing, in order to avoid unnecessary stress and anxiety. I will update my carrier screening at an appropriate time for me, which is not in the middle of my pregnancy.

And yet, many of my genetic counseling colleagues (since we obviously all discuss what we would do…) would choose the complete opposite route. They would do extensive prenatal genetic testing, extensive carrier screening, and want to find out as much information as possible about the genetic make-up of their baby.

Which is the “correct” decision? Well, we each make the correct decision for ourselves. Knowing myself, and knowing all of the many genetic testing options out there, the “low tech” route was correct for me. Someone else? Well, that person will need to weigh the options and figure out which route is correct for them. Genetic testing is always a personal decision. Only you can answer the “Do I want to know?”, “Will this information be helpful for me?”, “Is now the right time?”, and “How will I use this information?” types of questions in order to come to the correct answer for you.

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!

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