Category Archives: Chani’s posts

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.

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.

Passover and the Seder: Time to be a Historian

sederPassover is traditionally the holiday of history. In fact, it is a unique time which we are told to actually be historians. The whole point of the Seder is so that we tell over the story of how we and our forefathers were slaves in Egypt, and G-d took us out. The Seder is set up to be multigenerational in that sense. Everyone is involved, grandparents, parents, children, and everyone has their own role.

Perhaps you already see where I’m going with this. Use this opportunity, gathered around with your family, to discuss and share your family medical history! Similar to the Seder, everyone in your family has a role in this, especially those who are already considered the family’s medical history “historians”.

Usually there are one or two individuals in the family who know something about the family’s medical history, but everyone else is typically clueless. I see this on a daily basis when I meet with patients and ask them questions about their family histories. I can rapidly tell the difference between those “historians” who know what medical issues run in their families, and those whose answers consist largely of “I don’t know”.

I didn’t know much about my family medical history until I became a genetic counselor and asked my mother (our family’s medical historian) all of the pertinent questions. My sisters still don’t know a lot, and their answers at a doctor’s visit will likely consist of a lot of “I don’t know”s.

Family medical history is something we all should know! It is the best predictor of future medical issues, and can help your doctors direct your care appropriately.

You can 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.

 

New Lesson! New Name!

MJGH logoIf you haven’t yet heard, last week we launched our new GeneSights lesson about Preimplantation Genetic Diagnosis (PGD). Well, I should say, it’s not a GeneSights lesson anymore. After listening to the feedback we’ve been getting, we decided to change the name of our online education series to one that can be more easily recognized and understood. Welcome to MyJewishGeneticHealth.com!

Our new lesson on PGD is a very exciting one, and one which we hope will be a valuable resource to the community. Our speaker, Dr. Harry Lieman, is the Director of the Division of Reproductive Endocrinology and Infertility at the Albert Einstein College of Medicine, as well as the Director of Montefiore’s Institute for Reproductive Medicine and Health, and the Liaison for Fertility and Reproductive Technologies at the PJGH.

Our PSA, Robin’s story, can be seen here. Speaking with Robin and understanding her story was pivotal in understanding why we needed to develop a lesson about PGD.

As was true for GeneSights, signing up for MyJewishGeneticHealth.com is free, and obviously does not replace regular medical care or visits with your doctor. We hope this lesson will help inform you and your loved ones about the process and utility of PGD!

Come learn with us!

The Law Protects My Genes?!?

DNA code analysis

We often talk about how genetic testing can help you, and the reasons that someone might want to have genetic testing done. What we don’t speak about so often is the practical (and legal) repercussions of having certain types of genetic testing. What I’m talking about here is genetic discrimination.

So here is the example. You have a genetic test and find out that you have a higher than average risk to have an aortic aneurism (which is very bad). Now, obviously we send you to a cardiologist and try to take steps to keep you healthy. But what does your employer do? What does your health insurance do?

The good news is that there are laws in place to protect you from being discriminated against due to your genetics. Different states may have unique laws in place to protect your rights. There was also a federal law passed in 2008 called the Genetics Information Non-Discrimination Act (GINA) which basically states that your health insurance and employer cannot discriminate against you based on a genetic test result.

So for example, you go to the doctor and your heart is deemed to be fine, but you have this genetic test result which indicates your increased risk for an aortic aneurism. Your health insurance cannot drop you, refuse to cover you, or raise your rates or premiums. An employer cannot refuse to hire you, fire you, pass you on a promotion, make changes to your pay, etc. based on that genetic test result.

However, this law does not protect against discrimination from life insurance or long term care insurance companies. (Granted, if you already have an aortic aneurism, that will probably trump the genetic test result.) However, it is definitely important to consider, especially for those who are pre-symptomatic. We often bring this up in our cancer genetic counseling sessions, especially for those who have not had cancer, but are at risk to have a BRCA mutation based on family history. The decision and timing of when to pursue genetic testing sometimes takes in to account purchasing or updating long term care insurance and life insurance policies.

For more resources on GINA, you can visit the Genetics and Public Policy Center and check out this very helpful compilation by the Human Genome Project.

 

You’re a Genetic Counselor?

Genetic CounselorI’ve always been aware that most people have no idea what I do.  But recently, I’ve discovered a new misconception and view of what a genetic counselor does, and it’s one which I think is worthwhile discussing.

I have recently interacted with a number of people who have expressed the same sentiment; I don’t need counseling so therefore I do not need to meet with a genetic counselor. “My child has a genetic disease, but I don’t need counseling”, “I just need to get my blood drawn for a genetic test, I don’t need counseling”, and most recently, “I don’t need to meet with a therapist, I just spoke with that genetic counselor”. These statements indicate a misunderstanding of what a genetic counselor actually does. You see, genetic counselors don’t do counseling.

Ok, that’s a bit misleading. We do speak with people, and often use counseling techniques in our sessions, most often decision-oriented counseling, crisis counseling, and other psychosocial techniques. Genetic counselors do have training in psychosocial counseling as part of their graduate training, however, any issue which is significant enough to necessitate counseling, should be handled by an actual counselor (therapist, social worker, psychologist, psychiatrist, etc.). I frequently refer patients to speak with therapists about various issues that come up in a genetic counseling session.

So what do genetic counselors do? Well, it’s going to be different in every session. However, the essence includes reviewing one’s medical and family history, family history risk assessment, discussing the features and inheritance of various genetic diseases, identifying appropriate genetic testing, and explaining the risks, benefits, and limitations of that testing, interpreting and explaining the significance of genetic test results, and identifying resources for the patient or family. I often see myself as a patient educator and a patient advocate.

This consultation is important for a number of reasons.

1-      Genetic tests are very specialized. I’ve said this before, but there is no one “catch all” genetic test. If you need genetic testing, it’s the genetic counselor’s role to make sure the correct test is being ordered.

2-      You need to provide informed consent when a genetic test is being done. This means that prior to having a genetic test done, you need to understand the risks, benefits, and limitations of that testing. All of those things are explained in a genetic counseling session, and informed consent is obtained.

3-      Interpretation of genetic test results is complicated and must be done in the context of personal and family history. This is what genetic counselors are trained to do!

4-      Pursuing genetic testing is always YOUR choice. Often there are even multiple testing options in front of you. It’s always up to you to decide if you want to do testing, and what testing you want to do. Genetic counselors specialize in helping people make the best decisions for themselves.

So is the name genetic counselor deterring people from meeting with us? Should the name be changed to a genetic consultant?

To learn more about genetic counseling, visit the NSGC (National Society of Genetic Counselors) website at www.nsgc.org

 

Genetic Screening Sunday

carrier screening PSAMost of my Sundays involve errands, and then some dedicated time to relaxing and recharging before the upcoming week. This past Sunday I spent ~8 hours at a screening event that we ran at YU, open to Yeshiva College and Stern College students and alumni, and community members in Washington Heights. Registration opened ~3 weeks ago, and we were almost at capacity within days. We ended up screening ~140 individuals (not too shabby if you ask me!).

Screening events such as this one are really great, but also very challenging. They are great because it enables a large audience to benefit and pursue carrier screening in a convenient and centralized location. Screening events are challenging because of all the planning, coordination, and logistics which are involved in counseling and testing literally hundreds of people at a time.

One of the things which made this event run so smoothly is a new video we created as a tool to teach people about Jewish carrier screening. We decided to make this short video around the same time that I filmed the video for our new GeneSights lesson about Preconception Carrier Screening. Some of the more amusing parts of the day were all of the “You’re the woman from the video!” comments that I got. You can access the full GeneSights lesson by signing up and signing in here.

Even though it was a very long day, luckily, we had a ton of help! Special thanks to all our physicians, genetic counselors and genetics fellows, volunteers from the YU Medical Ethics Society, volunteer genetic counseling students, and our phlebotomists! (Anna, Ariella, Aryeh, Avi, Barrie, Carol, Chana, Chris, Emily, Jon, Mickey, Pauline, Sam, Sara Malka, Sara Malka [yup there were 2], Shirley, Susan, Tehilla, Temima, Yocheved, and Yosef). We could not have done it without you! A big thanks to Estie Rose, our genetic counselor who organized the event. The day went so smoothly, and in my opinion, was a big success. Now it’s time to wait for the results and begin the never ending process of follow up. Since 1 in 3 Ashkenazi Jews is a carrier for one of the conditions we screen for, I guess we’ll be expecting ~47 carriers from this screening event. That’s a lot of follow up!

If you missed the event but would still like to be screened, check out these great instructions on how!

Back to the Swing of Things

swingWelcome back! Summer vacations have come to an end, we’ve passed the Labor Day mark, school is back in session, and we’ve reached the never ending season of Jewish holidays. We’re finally (almost) back to regular swing of things.

Here at the Program for Jewish Genetic Health, we’re also really excited about kicking off the New Year. We recently reflected on some of the projects we’ve been working on, and have realized that we have quite a bit to be proud of!

We’ve been trying to spread information and education about genetics and how it impacts the Jewish community. This past January, Estie wrote an article for the Jewish Press  talking about the importance of preconception carrier screening, and just this past August, she wrote another article explaining the importance and utility of genetic counseling. I wrote an article which appeared in the Jewish Press about BRCA related hereditary cancers and the usefulness of genetic testing.

Over the past year, we launched our GeneSights online education platform, as well as three lessons; Genetics 101, Hereditary Breast and Ovarian Cancer (BRCA1 and BRCA1), and Inflammatory Bowel Disease: Crohn’s Disease and Ulcerative Colitis. Our next lesson:  Preconception Carrier Screening: Tay Sachs and many other diseases, has already been filmed, and we’re planning to launch it this October or November!

We’ve given numerous in-person talks and educational events in and around the NY area as well as in Memphis, TN, Chicago, IL, and Phoenix, AZ. In addition to community education, we’ve focused on educating Rabbis, community leaders, and healthcare providers about some of these important issues. We have a number of new educational events scheduled and in the works for the upcoming year!

Aside from being able to help coordinate carrier screening at our clinical offices at Montefiore, we’ve also held a community screen this year at Columbia University. Our annual community screen for Stern College, YU, and the Mount Sinai Washington Heights community is coming up soon, and will be on November 10th, 2013 (hope to see you there!).

To me, the fall has always felt like a time of new beginnings. As I child, I loved going back to school, learning new things, and getting a fresh new start. Here at the Program for Jewish Genetic Health we have lots of new and exciting projects in the works. We’re hoping that this upcoming year will be a fantastic one for our PJGH family, and for yours.

(And to get back on my soap-box for one more minute, as I’ve done now on numerous occasions, I’ll remind you to find out more about your family medical history. If you’ll be with family over the holidays, use this opportunity to speak with them and gather this important and potentially lifesaving information!)

Our New GeneSights Lesson: Inflammatory Bowel Disease

genesights logo

After months of hard work, we recently launched our next lesson on our GeneSights Jewish Genetic Online Series. You’ll remember how excited we were when we launched our first lesson on BRCA1 and BRCA2 related Hereditary Breast and Ovarian Cancer. Well, we’re just as excited about our new lesson about Inflammatory Bowel Disease (IBD)!

For this lesson, we have a fantastic speaker, Dr. Judy Cho, director of the Inflammatory Bowel Disease Center at Yale, who shared her expertise about Crohn’s Disease and Ulcerative Colitis. The associated PSA, Alyssa’s story, can be seen here. Truth is, even though I have a number of friends who have Crohn’s disease, I really didn’t have any idea what it was all about until I watched Dr. Cho’s webinar.

We partnered with the Crohn’s & Colitis Foundation of America (CCFA) – Greater New York Chapter to increase awareness about IBD, and help connect those who are dealing with IBD or are trying to find out more about IBD, with a fantastic resource!

Remember, signing up for GeneSights is free, and obviously does not replace regular medical care or visits with your doctor. We hope this lesson will help inform you and your loved ones about Crohn’s Disease and Ulcerative Colitis. I know it informed me!

Come learn with us!

The Promise of Genetic Testing?

DNA code analysisGenetic testing is complicated. No really, it is! Since the concepts of genetics and genetic testing are so abstract for most people, coupled with hearing about all of these new and fancy genetic technologies, people assume a simple genetic test can tell you just about anything. Unfortunately, it can’t.  Here are a few things about genetic testing which will hopefully set you straight.

1) We cannot prenatally test for intelligence, height, hair color, or athletic ability. We cannot create designer babies either. This comes up a lot when we think about the ethics of prenatal testing and the fear of eugenics. We can’t test for, or manipulate these traits because we don’t know the gene, genes, combination of both genes and environmental factors which contribute to their development.

2) Prenatal testing at this point is limited to things which are common, or known. We can test your unborn baby for Down syndrome (caused by 3 copies of chromosome 21), or other chromosome abnormalities. However no matter how much testing we do, we cannot test for mental retardation, autism, or even rule out the possibility of any genetic diseases or problem. This is primarily because, as I mentioned before, we don’t know the cause or causes of these things. If there is a specific genetic disease in your family where the gene and mutation has already been identified, we CAN test your baby for that. However when it comes to prenatal genetic testing, we are limited to only being able to test for things when we know EXACTLY which gene we’re looking for, and many times, what specific mutations we’re looking for within the gene.

3) While we can sequence your genome, we can’t really tell you what it all means, yet. As perhaps you have been starting to see, for all that we do know about genetics, we still don’t know a TON.  Genetics, and the interplay of our genes and environment are much more complex than you might expect.  And in addition to the genes which we know of in the body, there is a large amount of regulatory regions which affect how those genes are expressed. Even the environment can affect how our genes are expressed. Without fully understanding the interplay between our genes, the regulatory regions of our DNA, and our environment, we can’t fully understand and explain the full implications of the genetic “sequence.”

4) Genetic testing does not consist of one “catch all” genetic test. There is no one genetic test which can tell you everything you’ve ever wanted to know about your future health risks, medical issues for your kids, and if you’ll develop cancer in the future. When we do genetic testing, we test usually one specific gene, sometimes even a panel of genes, based on the particular symptoms or family history. That’s why the process of genetic counseling and genetic testing is so thorough. We assess your medical and family history to determine which genetic test should be ordered, since after all, you do have thousands of genes and we aren’t testing them all at once.

At least not yet.

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