It's experimental? Since when?
January 6, 2014 1:25 PM   Subscribe

Questions around experimental procedures, health insurance, incommunicative doctors, and trying to advocate for someone who resists advocacy. I've broken down my big questions with some supporting info below.

Okay so I'm feeling pretty overwhelmed and don't know what to do.
This story involves my health insurance co (through work), my husband's surgeon, and my husband.

If an insurance company asserts that a certain procedure is experimental for the patient's condition, how does a doctor go about proving that it isn't?

About the procedure:
The procedure is lumbar spinal fusion and it's for the condition where the cartilage in the disc slips out of bounds and starts crushing a nerve, and then you get surgery where the cartilage is removed and then scar tissue takes its place, then after you lose health insurance for 2 years and then get it back, the doctor wants to permanently protect the nerve from getting impinged on by anything else via lumbar fusion.

How would I, as the patient's advocate, go about confirming independently whether or not it's considered experimental?
The insurance company is claiming it is (I just found this out from them today), and the doctor never mentioned this to me or him, so really I don't trust any one right now. In fact I'm angry at the doctor's office for wasting our time and money and putting him through painful and expensive physical therapy that did nothing to address the insurance company's actual biggest concern. (This anger my hubby describes as "siding with the insurance company".)

Would getting a second opinion from another doctor hasten the approval? Or help me understand what's going on?

Would it be possible or considered ethical for me to ask for his entire file and take it to another doctor if my husband won't be on board with that until I can prove that it will work?

Am I wrong in thinking that the doctor's office spectacularly screwed up by not addressing this with us when we were in last and causing a lot of time and money to be wasted? And that they don't deserve another chance?

I need help and I don't know who to turn to.
posted by anonymous to Health & Fitness (12 answers total) 1 user marked this as a favorite
First, I'm sorry for the crap you're going through, as a spouse and with regards to his pain and this general red tape madness.

I'd get a hold of HR and find out if part of your benefits package includes the services of health care advocates or specialists to help you navigate this as part of your benefits (so at no further cost to you, or reduced cost, depending on the level of specaility needed). I found out about ours a while back. She didn't end up helping me, but YMMV.
posted by tilde at 1:28 PM on January 6, 2014

I think you need to go back to the doctor who suggested this procedure and give them the opportunity to explain themselves before permanently deciding they're a bunch of bad eggs. My insurance randomly decides not to cover certain things hear and there and when that happens I go back to my doctor and the doctor usually goes, "Say WHAT????" and then gets on the phone and makes everything ok. Your doctor may not know that the procedure is considered experimental. The procedure may also NOT be experimental at all but your insurance is being pissy and wants you to think it is so you won't pressure them to cover it. Your doctor can still work with you to find another treatment plan, so give them the chance to do so if you haven't already.

Sorry for all this trouble. Hope you get the answers you need soon.
posted by These Birds of a Feather at 1:31 PM on January 6, 2014 [4 favorites]

Also, I'd be very careful about how you talk to your doctor right now. If you want his office to be on your side, you gotta refrain from venting your justified anger about this situation on them. I would call the office and say something like, "I just heard back from my insurance and it looks like this procedure won't be covered on the account that it's experimental. This is obviously not good news, so I'd like to discuss my options with the doctor ASAP if not immediately given how crucial this procedure is. When is the earliest I could speak with the doctor, either in person or over the phone, please?"

Then you get on the phone with your provider and ask them what steps you'd need to take to contest the assertion that the procedure is experimental and therefore not something that can be covered. Make a list. Bring it to your appt.

Then you talk to the doctor and say, "We are so disappointed to hear that our insurance sees this procedure as experimental. You didn't seem to be of that position when you recommended it; could you help us understand this conflicting information so we can reconcile the info given to us from both you and our provider? Is there any way you could go to bat for us to demonstrate that this is medically necessary and not experimental so we can get what we need?"
posted by These Birds of a Feather at 1:42 PM on January 6, 2014 [2 favorites]

Your doctor may just need to re-code the procedures. Each insurance company is different and what one recognizes as "reasonable and customary" another won't. All insurance companies have an appeals process, but talk to your doctor before you get that going.

I had a flu shot in my doctor's office one year. My insurance wouldn't cover it. They re-coded it and it sailed through with no problem.

Call your doctor's billing office and have a calm discussion with the person there. It could just be a mistake, or they can be an advocate for you in an appeal if need be.

Don't be angry, this is just one of those bureaucratic hassles you get when you have a multi-payer system.
posted by Ruthless Bunny at 1:45 PM on January 6, 2014 [3 favorites]

Would getting a second opinion from another doctor hasten the approval? Or help me understand what's going on?

Maybe. But it might also muddle things further. I think RB's advice to have a calm discussion with your doctor's office is a better place to start.

Would it be possible or considered ethical for me to ask for his entire file and take it to another doctor if my husband won't be on board with that until I can prove that it will work?

Can't speak to the feasibility, but definitely not ethical IMO. Those records are your husband's and it is not appropriate to try and get your hands on them for any purpose without his express permission.

Am I wrong in thinking that the doctor's office spectacularly screwed up by not addressing this with us when we were in last and causing a lot of time and money to be wasted? And that they don't deserve another chance?

Maybe, maybe not. Isn't it easier to approach the situation assuming that someone made a mistake that can be rectified, rather than going in with guns blazing before you have the full story?
posted by schroedingersgirl at 2:12 PM on January 6, 2014 [1 favorite]

You need to check with your individual policy, but I know that BCBS of Kansas has a series of policy memos that are regularly updated explaining experimental procedures.

I know that their lumbar fusion policy has a series of steps that must be done before they will pay for a fusion. If all of the required points are not met then that procedure is considered experimental.

Here is a link to the policy: Lumbar Spine Fusion (PDF)

I would start with the surgeon. S/he should know all of the insurance company's policies or can find out quickly what they are and can advise you on your next steps.
posted by Broken Ankle at 2:16 PM on January 6, 2014 [3 favorites]

My wife and I went though something similar about 5 years ago. She has systemic lupus, and in a matter of two days went from perfectly healthy to completely paralyzed from the neck down. Most of the doctor's were stumped, and after 6 weeks of various treatments not working, we had a rheumatologist suggest a chemotherapy treatment along with plasma fresenius. At that point we didn't care if it was covered, we were deseperate for anything to work before the paralysis became permanent. It worked and she is completely healthy now, but our insurance company decided that the treatment was experimental for lupus.

After constant communication with the insurance company we were able to get our doctor to explain the procedure and we formally appealed the decision. After 4 months of back and forth, the insurance company finally broke down and fully covered everything.

That said, I think your best bet is to approach your doctor first and explain the situation. They might be able to contact the insurance company and fully explain the procedure. I would also file an appeal in the meantime, but don't give up. As long as you are open with the insurance company (and level headed) they should keep the case open without sending it to collections.
posted by Benway at 3:36 PM on January 6, 2014 [2 favorites]

My father had this exact procedure six months ago. I see some very helpful advice above, and wanted to add that my father's surgery was completely covered by Medicare and while the procedure is new, it is not "experimental."

If you would like a second opinion and are in the Bay Area I can recommend my father's surgeon, who is affiliated with Stanford. Actually, if you are putting together a petition and need some scientific literature his office might be able to help you out. MeMail me if you'd like contact info.

I should add my father's surgery was very successful and eliminated his symptoms entirely. I hope your husband is able to have it.
posted by foxy_hedgehog at 6:27 PM on January 6, 2014

An observation: there were recently a few articles in the Washington Post about spinal fusion surgery, particularly from the point of view that surgeons tend to "overperform" this surgery to make money. Maybe this is why your insurance company is being difficult?
posted by kuanes at 7:04 AM on January 7, 2014

Not sure why you're angry at your doctor. It's not his or his office's responsibility to know the minutiae of every insurance plan's coverage spectrum. This is a commonly performed and commonly covered procedure, though in general, it's considered a last resort when time, conservative measures and rehabilitation fail, and its efficacy and indications are debatable. So being mad at him for sending your husband to physical therapy is also rather strange. That's pretty much a textbook recommendation. I would be mad if surgery was recommended without a tincture of time and a shot at physical therapy.

Physician's order tests and procedures that require prior insurance authorization all the time. Call the office, confirm that they are aware that his insurer has not authorized the procedure, and see what they can do to get authorization.

If your husband is amenable and shares your distrust of the doctor, by all means gather your records and get a second opinion. Spine surgery is A Big Deal, and not all doctors will agree on if and when it is necessary, but I wouldn't exactly describe this as "experimental" in the sense that it's some new unexplored treatment. This procedure was first performed over a 100 years ago, and has been evolving since.
posted by drpynchon at 7:09 AM on January 7, 2014 [2 favorites]

I agree that your anger at the surgeon is misplaced.

In addition to contacting the surgeon and getting whatever assistance you can there, you should check your insurance policy on appeal procedures, particularly deadlines. Make sure you appeal in a timely manner.

What state are you in? In New York, there is a statutory provision that allows you to appeal denials of coverage to an outside state agency. I had a problem last year when our insurance carrier denied coverage for residential substance abuse rehab for a relative. The carrier's position was that residential rehab was not medically necessary, and that outpatient treatment would have been adequate. To me, that was a joke; outpatient treatment would have been a complete and utter waste of time. I had to go through two required levels of internal appeals with the insurance company, which (no surprise), I lost. But then I appealed to the outside state agency, and won. That win was worth $30,000, so I was very happy. It was a long slog, though, and deadlines are important.

The Affordable Care Act (Obamacare) has a similar provision, but I have no personal experience with that, as the New York State provision worked well for my purposes.

Anyway, you might want to try to figure out what state agency deals with these external appeals, and see what guidance they can give you.
posted by merejane at 1:02 PM on January 7, 2014

Another place that might help: your state Attorney General's office. I had another problem with our insurance company last year where they kept asking for more information, and were never satisfied with what they got. The frustrating thing was that there was no decision whether to grant or deny the claim, so there was nothing I could appeal. I was stuck in limbo. So I contacted the NYS Attorney General's office, and they put someone on the case. I think mostly that just prompted the insurance company to get their act together, knowing that a state enforcer was watching. Anyway, it worked.
posted by merejane at 1:22 PM on January 7, 2014

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