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Dispute about genetic testing cost - similar experiences?

by kullybunnny1 on Mon Sep 08, 2014 9:24 am

I've been engaged in a 6 month battle with my provider and my insurance in regards to a genetic test done during my stem cell harvesting. I'm being told that the patient liability requires me to pay the cost ($6,000) for the experimental procedure.

I asked my BMT team if any experimental procedure was to be used after being advised by an insurance company advocate, and was told no. In fact, I was told even if the question came up, they would take care of it.

I feel like I just bought a three wheeled car! Any thoughts or advice would be appreciated!

Kully

kullybunnny1
Name: Kully
Who do you know with myeloma?: me
When were you/they diagnosed?: August 2013
Age at diagnosis: 48

Re: Dispute about genetic testing cost - similar experiences

by Multibilly on Mon Sep 08, 2014 3:54 pm

I'm assuming that you've already gone through your insurance company's appeal process that is outlined in your policy? If so, you can then try contacting you state insurance department and request an independent review. You insurance company may just decide to cave rather than to go this process.

I'm not sure that you have any recourse with the medical institution if your exchange with them was purely verbal.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Dispute about genetic testing cost - similar experiences

by kullybunnny1 on Mon Sep 08, 2014 4:03 pm

Thanks Multibilly! I'll follow your lead and contact the state for an independent review.

Kully

kullybunnny1
Name: Kully
Who do you know with myeloma?: me
When were you/they diagnosed?: August 2013
Age at diagnosis: 48

Re: Dispute about genetic testing cost - similar experiences

by kullybunnny1 on Tue Sep 09, 2014 8:53 am

All, I have action on my genetic testing cost question! I want to thank Multibilly and the MB staff for their assistance. I'm sure I'm leaving both parties scratching their heads as to what they did, and I'll explain. Having a forum like the Myeloma Beacon offers an opportunity to reach out when your feeling alone in this fight and be given the confidence that there is hope!

Thanks again to all!

Kully

kullybunnny1
Name: Kully
Who do you know with myeloma?: me
When were you/they diagnosed?: August 2013
Age at diagnosis: 48

Re: Dispute about genetic testing cost - similar experiences

by kullybunnny1 on Sun Oct 12, 2014 12:19 pm

Update on my struggles with experimental genetic testing ...

My insurance has deemed it as experimental and will not pay the cost. Now my cancer center says I'm responsible.

I had no idea the test was going to be performed and I have never been told results. How can they say this is now my responsibility?

I was offered a payment plan option but, if I had been told that I would need to pay this cost, I would have not had the ASCT.

Any thoughts or advice?

Kully

kullybunnny1
Name: Kully
Who do you know with myeloma?: me
When were you/they diagnosed?: August 2013
Age at diagnosis: 48

Re: Dispute about genetic testing cost - similar experiences

by ivanm on Mon Oct 13, 2014 10:49 am

I was kindly asked by The Beacon to look into this thread. I am a mergers and acquisition tax lawyer and litigation is not my field, but I work for one of the rather famous litigation firms in the country. So, I know a bit about this stuff.

With that qualification, this strikes me as a legal controversy. If you did not authorize the charges, the hospital has no basis to come after you. That at least is my initial reaction. It makes sense to me that you write a letter laying out the facts and disputing the charge. The letter should cc their legal department or senior hospital administration. You are probably dealing with some administrative collections clerk at this point. The letter should convey that you will defend your rights as a consumer, including contacting your local consumer protection agency and the attorney general. Medical billing issues is something that they should be rather familiar with.

I'd recommend looking for a lawyer, but, regrettably, the sum is too low so probably nobody will touch it and I do not know if this is something that the winning party can collect legal fees for.

I know what I would do. I would first send them the aforementioned letter (email attachment also works). If they insist that they should be paid, so be it. That's why we have our legal system. I would not pay, and would have them sue me if they want. I would further file a complaint with the attorney general if I feel particularly strong that I've been wronged. Then I would appear pro see (i.e. represent myself).

All of that said, the practical problem there is that you are creating a tenuous relationship with your healthcare provider and also possibly jeopardizing your credit. If it boils down to a credit issue, you can file a dispute letter with the credit reporting agency and subsequently sue them under the Fair Credit Reporting Act. You can possibly join the hospital as a co-defendant.

Regrettably, all of this takes time and involves a significant amount of frustration. I hope that you will never have to get all the way there and the letter will suffice.

Good luck to you.

ivanm
Name: Ivan Mitev
Who do you know with myeloma?: self
When were you/they diagnosed?: August, 2011
Age at diagnosis: 37

Re: Dispute about genetic testing cost - similar experiences

by kullybunnny1 on Mon Oct 13, 2014 12:30 pm

Thank you Ivanm and Myeloma Beacon for the response and advice. I will complete the letter stating that I felt that I was misled with the test. This just strengthens both my resolve and my appreciation of this forum.

I'll keep you posted! :D

Kully

kullybunnny1
Name: Kully
Who do you know with myeloma?: me
When were you/they diagnosed?: August 2013
Age at diagnosis: 48

Re: Dispute about genetic testing cost - similar experiences

by LarryD on Tue Oct 14, 2014 7:09 pm

Dear Kully,

The thing that jumps out at me from your post is, "I have never been told results." If a procedure or test was done, then you absolutely have a right to the results and you should demand them. You should insist on having a complete, written copy of all reports generated. If those reports contain medical jargon that you don't understand, then you should insist that a knowledgeable person (preferably your treating physician) explain them to you. Someone should tell you exactly how this test was of benefit to you. If the test was really "experimental," then perhaps the benefit was mainly to some research program rather than to you; in that case, the research program should pay.

Indeed, you have a right to a copy of all your medical records. You should be able to find out from those records exactly who ordered this test, and to see any notes discussing what indications led to its being ordered. Once you understand exactly what was done, you should be able to consult with experts to determine whether it really is considered experimental. If people on this forum have had the same test, they may be able to provide important insights.

I certainly agree with ivanm's suggestion that you dispute the charge in writing on the ground that you never authorized the procedure. The hospital may say that something you signed constitutes authorization, but since you specifically asked about experimental procedures and they denied that any were involved, I think you have a strong claim that it was beyond anything that you authorized.

If, heaven forbid, you should end up paying for this, then at least you should get something useful out of it. Demand those results!

Best wishes,
Larry

LarryD
Name: Larry D'Addario
Who do you know with myeloma?: wife
When were you/they diagnosed?: September 2012
Age at diagnosis: 65

Re: Dispute about genetic testing cost - similar experiences

by Cheryl G on Fri Oct 17, 2014 7:40 pm

Hi Kully,

Did you see this in Steve Mohr's column from today?

However, expect “insurance surprises.” My surprise came in the form of a $12,000 claim that arrived nearly two years after the service was performed and was rejected. My policy excludes genetic testing. Because the word “cytogenetic” appeared on a claim presented to the insurance company, payment of the claim was denied, citing the genetic testing exclusion. Fortunately, a young account representative at the cancer center vigorously pursued this error on my behalf and was able to get it covered by my health insurance carrier."

This sounds a lot like it could be exactly what happened in your case.

Cytogenetic testing includes tests like the "FISH" analyses that most myeloma patients have done to figure out what chromosomal abnormalities their myeloma cells have. So your hospital may be thinking: "Sure, you knew about these tests. Your doctor almost certainly discussed them with you."

You, on the other hand, are hearing from your insurance company that you had "experimental" genetic testing done, because they see "cytogenetic" and thinks it's some sort of strange "genetic" testing. Yet you don't recall ever having approved any experiment genetic testing.

Like I said -- what happened to Steve could be exactly what happened to you.

Good luck!

Cheryl G

Re: Dispute about genetic testing cost - similar experiences

by kullybunnny1 on Fri Oct 17, 2014 8:29 pm

Cheryl G,

Yes, I read Steve's column and thought, "Hey, that's me!". I may have a resolution to my dilemma but, instead of a dedicated billing clerk, I was the one doing the leg work.

As I came out of the fog (I read Steve's columns often) that is multiple myeloma, I started tracking my medical expenses. I initially received a printed copy of my Summary Explanation of Benefits (SEB) monthly and then set up an online account. I noticed after my transplant that a series of claims were unpaid. The next month, my SEB showed that I was responsible for $12,000. I then called both my insurance and my provider and started a 6 month journey of email correspondence.

I hope that others don't experience this and, if so, please seek advice from others.

Thanks again!

Kully

kullybunnny1
Name: Kully
Who do you know with myeloma?: me
When were you/they diagnosed?: August 2013
Age at diagnosis: 48


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