BRCA gene testing coverage

[cp73]

I just received a medical bill for $4909 which medicare and my supplement denied coverage on. This was for a test I had requested for BRCA gene testing. This BRCA gene if you have it means that your risk of getting breast or prostate cancer is a lot higher than the normal population. My sister had breast cancer and has this gene, however it doesn't mean that I automatically have it. If I dont have it, it does mean that my daughters dont have it also. My daughters wanted to know if I have it, if I didn't then its no issue. However, if I do have it they would get testing to see if they have it. So I said I would get this blood test done. Called my Dr and had him write up an order for it. He said I had reason for him to order it due to my family history of the gene and cancer. Now I find out that medicare and my supplement both denied coverage of it. My quick search on internet says Medicare won't pay for it if you dont have cancer. So if medicare won't pay my supplement won't cover it.

I am surprised that the lab or my doctor wouldn't have known that insurance doesn't coverage and raise a flag and send it back to me with the costs before doing the test. I just sent a note over to my doctor to have him look and this. Any thoughts from tuggers on what options do I have regarding payment of this bill. I never would have ordered it had I known I was going to have to pay $4909 for it.

 

[Panina]

I just received a medical bill for $4909 which medicare and my supplement denied coverage on. This was for a test I had requested for BRCA gene testing. This BRCA gene if you have it means that your risk of getting breast or prostate cancer is a lot higher than the normal population. My sister had breast cancer and has this gene, however it doesn't mean that I automatically have it. If I dont have it, it does mean that my daughters dont have it also. My daughters wanted to know if I have it, if I didn't then its no issue. However, if I do have it they would get testing to see if they have it. So I said I would get this blood test done. Called my Dr and had him write up an order for it. He said I had reason for him to order it due to my family history of the gene and cancer. Now I find out that medicare and my supplement both denied coverage of it. My quick search on internet says Medicare won't pay for it if you dont have cancer. So if medicare won't pay my supplement won't cover it.

I am surprised that the lab or my doctor wouldn't have known that insurance doesn't coverage and raise a flag and send it back to me with the costs before doing the test. I just sent a note over to my doctor to have him look and this. Any thoughts from tuggers on what options do I have regarding payment of this bill. I never would have ordered it had I known I was going to have to pay $4909 for it.

Initially call the lab and tell them you privately want to take the test and self pay. My guess is it will be less then you were billed. That is the price you can negotiate to. Then in next call you can tell them you didn’t realize it wasn’t covered aNd what can they do for you if you pay it in full right away. The other option is to set up a payment plan. Your doctor will only be able to help if Medicare makes exception.

 

[Timeshare Von]

I have faced genetic testing for a couple of health issues . . . first with ovarian cancer and most recently after being diagnosed with HCM (hypertrophic cardio myopathy).

With the testing and ovarian cancer, they told me it would be covered but it wasn't so the medical provider ate the costs (not nearly as much as yours).

For the HCM, because it is 100% a genetic disorder/disease, my specialist highly recommended it. Knowing it wouldn't be covered and the fact that I have no kids and with two sisters (one of whom has a son diagnosed with HCM about 15 years ago) there is really no purpose for me or my family to incur the cost. I did offer to undergo the testing for medical research, but not at my own expense. The doc said they don't work that way.

Bottom line regarding what the lab or doctor knows about insurance coverage . . . I have to say insurance is very complex and it is impossible for them to know. Even my primary care doc doesn't know the ins & outs of insurance coverage and has done some things, only to find out it's not covered if he does it (like the shingles vaccine which is only covered if I have it done at a pharmacy setting and not at my PCP office).

 

[turkel]

I am surprised that the lab or my doctor wouldn't have known that insurance doesn't coverage and raise a flag and send it back to me with the costs before doing the test. I just sent a note over to my doctor to have him look and this. Any thoughts from tuggers on what options do I have regarding payment of this bill. I never would have ordered it had I known I was going to have to pay $4909 for it.

It is not your doctors responsibility or the labs to know your coverage. It is yours. Some procedures require preauthorization. If no preauthorization is required why would either the Doctor or the lab make any pre inquiries about your coverage. You asked for the test your doctor complied with your request and now your holding him responsible ?

Isnt your life and your daughter’s worth the price? I admit it’s expensive but now you know the results and are aware that as the consumer it is your job to know your coverage.

Please explain why your doctor should be responsible for your health and your insurance.

 

[cp73]

It is not your doctors responsibility or the labs to know your coverage. It is yours. Some procedures require preauthorization. If no preauthorization is required why would either the Doctor or the lab make any pre inquiries about your coverage. You asked for the test your doctor complied with your request and now your holding him responsible ?
Isnt your life and your daughter’s worth the price? I admit it’s expensive but now you know the results and are aware that as the consumer it is your job to know your coverage.
Please explain why your doctor should be responsible for your health and your insurance.

I don't think he should be responsible, but at least at a minimum if he wasn't familiar with who pays says so and throw it back to me to figure out. I would think that generally the doctors should have an idea what types of things are generally covered especially if your on medicare. What if the service was provided by his office, I would expect he would know. Well I sent a note over to him he will probably respond that they dont know whats covered and whats not based on your insurance.

I did get the results and the funny thing was the results weren't clear. Basically the results said I was tested negative for the BRCA gene however they were others things noted in the test that they do not know the significance of or whether its related to the BRCA. Thats probably a CYA statement.

 

[Luanne]

I've found that doctors, and labs, don't know what is covered. My doctor gave me an expensive prescription for a medication and a coupon that he said would help. Well no, it didn't since I have Medicare Part D. Then I had some tests done in a lab and I was told the urine test wouldn't be covered and probably not part of the blood testing. Well, it was.

 

[bogey21]

Here is what I know (or maybe it was knew). It was 3 or 4 years ago and I wanted to get genetically tested for the colon cancer gene. I went to UT Southwestern, a major hospital that specializes in genetic testing. Before getting tested they had me compile a 3 generation (me and my siblings, my parents and their siblings and my grandparents) family tree. They wanted the name, dates of birth and causes of death for all in the tree. The reason was the Medicare payment rules. For Medicare to pay you had to satisfy certain criteria. One was something like more than 2 in the 3 generation family tree had to have died from the cancer you wanted to test for...

I didn't qualify so I asked the Doctor what it would cost me to pay for it myself. She told me that because she was counseling me I was technically a patient of the hospital and could get the hospital rate which was something like $400. I asked her what I had to do. She said "Give my your Credit Card". I did and she called the lab and said "I will be sending you blood for (insert my name) and want it tested for Panels 1 through 7" or something like that (this covered a lot more than just the colon cancer gene). She gave them my name and Credit Card Number, hung up, drew my blood and sent it off. In about a week I went back and she discussed the results with me...

The point of me going through this story is if you are going to do something like this, deal with the pros not with just any Doctor...

Actually it cost me more to get someone to put together my family tree done right with supporting documents, birth certificates, death certificateas, immigration certificates, pictures of tomb stones, etc. than it cost for the genetic testing...

George

 

[geekette]

I can tell you that a mammogram is a couple hundred bucks retail, diagnostic mamm more like 600. Rotator cuff surgery around 9k. MRIs roughly a grand, depending. the only reason I know is because I shopped around to find out. It's really one of the worst things in health care, there is no list of prices. No easy menu to cruise, and rarely straight talk. Docs don't always know, they aren't sales people. They/their staff enter info from your appt and that info goes where it goes and the relevant parts land in billing where the algorithms do the work.

When I was offered BRCA test, because I don't have the risk/history, it would cost me full freight. I was told there were ways to get it for $1k, but because I wasn't "a candidate" that wasn't applicable. I can't fully remember, I think there was a study going on that would have decreased my cost.

I'd start with Cancer Society, as I cannot remember what the different programs were that could have reduced cost, but there are some. I did not have the test.

 

[bogey21]

the only reason I know is because I shopped around to find out.

This reinforces the point I tried to make in my post. Do not depend on anyone else. If something is elective or otherwise not time sensitive, check out what it will cost yourself....

George

 

[chellej]

Years ago My Doc suggested I look into the genetic testing because my maternal grandmother, my mother and my mother's sister all had breast cancer....you would think that would mean I am at high risk. I was sent first to a genetic group that had me fill out a questionnaire regarding all the cancer in my family....this included at what age it was contracted. Because in my relative's cases they did not contract breast cancer until they were in their 60's, I did not qualify to get tested for the BRACA gene. They would not do the test until they determined my risk. I am surprised that they would just send you for the test.

 

[Panina]

I don't think he should be responsible, but at least at a minimum if he wasn't familiar with who pays says so and throw it back to me to figure out. I would think that generally the doctors should have an idea what types of things are generally covered especially if your on medicare. What if the service was provided by his office, I would expect he would know. Well I sent a note over to him he will probably respond that they dont know whats covered and whats not based on your insurance.

I did get the results and the funny thing was the results weren't clear. Basically the results said I was tested negative for the BRCA gene however they were others things noted in the test that they do not know the significance of or whether its related to the BRCA. Thats probably a CYA statement.

Insurance is constantly changing especially if it is not straight medicare but a hmo. What’s covered today might not be covered tomorrow and vice versus. I have experienced it with my other half with regular insurance ( not medicare), each year more and more has been limited, more premiums, more copayments, more co insurance and less choices.

I have great insurance and even at times I have had to pay for certain blood tests that my insurance did not cover. Sad.

 

[bogey21]

I can tell you that.......MRIs roughly a grand, depending. .

You are right on. I had 3 MRIs just last week. The hospital billed around $1,100 for each. Medicare paid the hospital a touch over $400 for each. My Supplimental Plan F kicked in something additional. My guess is that the hospital netted about $500 for each of them as I paid nothing (other than my Medicate Part B and Supplimental Plan F premiums)....

George

 

["Roger"]

....

I did get the results and the funny thing was the results weren't clear. Basically the results said I was tested negative for the BRCA gene however they were others things noted in the test that they do not know the significance of or whether its related to the BRCA. Thats probably a CYA statement.

There are certain mutations to the BRCA genes that are known to increase the risk of breast cancer. About ten percent of women tested show up with a variant for which it is not yet known whether these variants carry an increased risk or not.

 

[VacationForever]

You can try to negotiate with the lab to see they are willing to knock the charge down.

I had requested a test to my doctor and he indicated that my medical insurance might not pay for it. I said no problem I would just pay for it.

 

[JudyS]

I think Panina has a good suggestion. See if the lab will give you the "self-pay" rate.

CP73, usually when a person knows what defect their family member has, testing is conclusive -- either the person being tested has the same defect as their family member, or they don't. I am surprised that you were given an inconclusive answer. Have you been able to speak to a generic counselor about this? You may also want to ask about your results on the support group www.facingourrisk.org Many of the people there are quite knowledgeable.

The rest of this won't help the Original Poster, (since the testing has already been done), but may be helpful to someone else. There are many different forms of BRCA gene defects, not just one form. These different defects are called "variants." (Technical reason for this: The BRCA1 gene is a very, very long gene, and the BRCA2 gene is moderately long. A defect can occur at any place along these genes.)

Some BRCA variants (defects) are hard to find and expensive to test for. Others are very easy to find. I have a BRCA1 defect that is common among people of my ethnic group (Eastern European Jewish.) A great deal is known about BRCA defects in Eastern European Jews. (The study that found the defects was done in New York City, and many Jewish women volunteered.) And, as it happens, the BRCA defects in Eastern European Jews are very easy to find.

I got direct-to-consumer DNA testing for a reason unrelated to breast cancer, and paid about $200 for it. I was shocked when the results came back saying I had a very dangerous BRCA1 defect. It took me months before I could find a doctor that would take me seriously and order an MRI. When I finally got the MRI, I turned out to have early breast cancer in my right breast. I had a double mastectomy, then also had my ovaries out. (BRCA1 defects also cause an extremely high risk of ovarian cancer, maybe 100 times as high as in women with no cancer defects.)

A BRCA defect can be inherited from either parent, not just from one's mother. But, if a person inherits a defective BRCA gene from their father, the person generally doesn't know they have inherited it. There is no breast cancer among my close relatives. However, my father's grandmother had ovarian cancer. I suspect I inherited the defective gene from her.

I suggest all people of Eastern European Jewish ancestry get tested. Direct to consumer testing costs $100-$200, and is usually very decisive, yes or no, if all of your grandparents are from this ethnic group. And, there are many ways to reduce risk besides a double mastectomy, especially if one find out about the defect relatively early (before age 35 or so.)

As for other ethnic groups, other groups either have lower risk, or less is known about their risk. But, the more people who get tested, the more we will know.

Genetic testing is how we will beat the problem of breast cancer striking middle-aged women out of the blue.

Colon cancer is another type of cancer that, when it occurs in middle-aged or younger people, often has a genetic cause. To anyone who has a relative who had colon cancer before age 60 or so, or who has several relatives who had colon cancer, I suggest talking to a genetic counselor. People who have hereditary cancer defects need to find out *before* they get cancer.

 

[1Kflyerguy]

While i don't expect the Dr, lab or any medical provider to know my exact coverage, but they usually have a general idea of whats typically covered or not.

I am often asked to sign a paper agreeing to pay if the insurance does not cover it. I got my 2nd Shingles vaccination last week, and my Dr presented me with a form stating i would agree to pay them $260 if my insurance did not cover it, (I already knew that was covered, so no issues).

Many people would have trouble paying an unexpected $5000 bill . I would expect a medical provider to let me know procedure may not be covered, as way to protect themselves from patients that can't or wont pay for the service.

 

[bogey21]

.I would expect a medical provider to let me know procedure may not be covered, as way to protect themselves from patients that can't or wont pay for the service.

Sometimes what you expect and what you get are two different things. Be careful depending on others...

George

 

[cp73]

The latest update on this is that I spoke with my doctor who was going to try to do something with this. However, at this point I hadn't received a bill from the lab so they said lets wait until we get an invoice. At this point all I know is that the services were incurred the end of Oct. On 12/30/19 Medicare declined payment and in mid January my supplement declined payment. As of 2/18/20 I have not gotten invoice from the lab. Until I receive the invoice there is nothing for me to try to negotiate on. Looking back on my original post I should have indicated that rather than say I got a bill. I didn't get a bill, I got a statement from Medicare and my supplement saying they got the bill and they aren't paying it.

 

[Paumavista]

I had cancer (my mother died of cancer, my father died of cancer, my maternal grandmother died of cancer; my paternal grandfather had cancer) my only brother was just diagnosed with cancer. My doctors recommended testing but did explain that if my insurance would not cover it I would need to pay the out of pocket costs (I think just under $500). The ironic thing is that I believe the in-network cost (which was covered was over $3K)…..be sure to talk to the testing company for the out of pocket cost. My tests came back negative.....no genetic connection.

 

[T_R_Oglodyte]

Personally I prefer that my doctor put his time and effort into maintaining and expanding his knowledge of medicine rather than his knowledge of medical coverage.

 

[bogey21]

Because in my relative's cases they did not contract breast cancer until they were in their 60's, I did not qualify to get tested for the BRACA gene.

I may not be 100% correct on this but my recollection is that the Medicare rule was something like either 2 or 3 (I'm fuzzy on which it is) in the first 3 generations of your family tree had to die of the same cancer before age 50 before they would cover genetic testing for that specific cancer...

George

 

[cerralee]

INVITAE testing can be self pay and runs approximately $400. After being diagnosed with Breast Cancer I wanted to be tested so my children would know if they carry the BRCA I or II gene. I came back as not having the gene although I did come back with genes of unknown significance that would allow not just my children, but other members of the family to be genetically tested at no charge. This was self pay as I was denied testing based on what family history that I knew. The surgeons office arranged the testing and provided the counseling that came back after the test results were in. I would suggest being tested as it turned out that my treatment plan was highly tied in to the test results. If I had the BRACA genes my plan of treatment would have been different. The subtype of Breast Cancer that I have has a higher percentage of BRACA than other cancers. If you are turned down please inquire about INVITAE as a testing alternative.

 

[cp73]

To update everyone. I did get my invoice from the lab after rejected by Medicare for payment. My doctor was going to rewrite the codes used to help determine payment. This was about 30 days ago. I called the lab again today and they said they never received it. Once they get it they will resubmit it to Medicare. I am not hopeful on medicare. After posting i did some research and medicare has some strict guidelines for Braca testing. One of them was the patient has to be diagnosed with cancer. The only cancer I have had was basil cell and squamas cell. Not sure that will qualify. But the question now I am trying to figure out is was the doctor required to get approval from Medicare before he ordered the treatment. When I take my car in for service I always know the cost before they do it. I would have expected the doctor to say something before he ordered it or maybe even the lab to ask for approval. The lab told me only dr approval is their requirement. I now realize this just wasn't another blood test like the other ones I get every year. Those test are usually only a few hundred dollars all covered by Medicare. This really upsets me. No way would I have ordered this had I known it was going to cost me $4900. Oh I did ask the lab if they could reduce it if I had to pay it. The answer was no....

 

[Panina]

To update everyone. I did get my invoice from the lab after rejected by Medicare for payment. My doctor was going to rewrite the codes used to help determine payment. This was about 30 days ago. I called the lab again today and they said they never received it. Once they get it they will resubmit it to Medicare. I am not hopeful on medicare. After posting i did some research and medicare has some strict guidelines for Braca testing. One of them was the patient has to be diagnosed with cancer. The only cancer I have had was basil cell and squamas cell. Not sure that will qualify. But the question now I am trying to figure out is was the doctor required to get approval from Medicare before he ordered the treatment. When I take my car in for service I always know the cost before they do it. I would have expected the doctor to say something before he ordered it or maybe even the lab to ask for approval. The lab told me only dr approval is their requirement. I now realize this just wasn't another blood test like the other ones I get every year. Those test are usually only a few hundred dollars all covered by Medicare. This really upsets me. No way would I have ordered this had I known it was going to cost me $4900. Oh I did ask the lab if they could reduce it if I had to pay it. The answer was no....

Offer to pay them $20 a week, tell them you can’t afford it. Try to go higher within the lab company to negotiate a lower rate. Tell them they never told you how much it would cost nor that insurance did not cover it. Keep pushing, you should be able to negotiate.

 

[Steve Fatula]

I am surprised that the lab or my doctor wouldn't have known that insurance doesn't coverage and raise a flag and send it back to me with the costs before doing the test.

But but that would make sense! Medical rarely makes sense any more. I hope your re-submission works out well. I spend a ton of time before any procedure any more to verify 5 times over it is covered and no surprises. It's simply ridiculous the hoops you have to jump through. I agree it is negotiable if it comes to that, I have had success. But it definitely upsets me when this happens. I feel your pain.