How can I convince Mom's insurance to approve treatment for leukemia?
April 7, 2017 11:59 AM   Subscribe

I'm quite upset regarding the way Medical Mutual (Insurance) has handled my Mom's leukemia treatment. She had a stem cell transplant and has been in remission for months now, but Doc says she's still not making new RBC's. He's proposed some sort of "boost" therapy to stimulate production, but our insurance denied the claim (among others). I've spent too much time arguing with them over the phone, and we've already appealed. What other avenues can we pursue to help change their minds? Is shaming through social media an option (We're in Cleveland)?

She's seeing a doctor of good repute at University Hospitals in Cleveland. Here's what her insurance (Medical Mutual) has denied so far:

1. The "boost" - was considered either experimental or investigational, so was denied. The Doc mentioned that our insurance was one of the few that had denied it. He claims it could make a big difference and he is well respected in his field, so I'm flabbergasted that insurance is denying this. We've already appealed, to no avail.

2. She's been having heart issues due to her treatment - insurance denied heart strain imaging because it was considered to be investigational. She had a clot about a week back which she had to be rushed to the hospital for, and they're still saying it's not necessary. We appealed this one as well, but it was denied.

3. She just got denied for Omperazole (generic Prilosec) even though she had been getting it before - Doc said she needs it for her graft vs host disease which has been acting up (it's in her lungs, a lot of coughing). They had switched her to Omperazole in the first place because the Nexium was too expensive.

I'm probably missing a few others, but this should give you an idea of what we're dealing with. She gets a lot of blood transfusions and fluids.

How can I convince them to approve these treatments? I'm at my wit's end, and have considered shaming the insurance company through social media (Facebook, Reddit, etc.) in hopes that this would change something - could this potentially help the situation? Any better ideas?

Please let me know if you need any other info, and thanks.

EDIT: Oh gosh - just found out that she's getting admitted to the hospital again today, so I'll be taking her up in a little while. Could really use some advice... we are both so frustrated with this insurance and it's severely impacting her stress levels, which need to be kept low. From what the Doctor said, the Boost could have a big impact on her treatment, so I can't believe it's being turned down.
posted by CottonCandyCapers to Health & Fitness (13 answers total) 3 users marked this as a favorite
After insurance appeals fail, you go to the state insurance commission. You will want a lawyer for that, since the complaint process is usually really involved and likely to fail. This is not legal advice. Here's the link for Ohio.
posted by blnkfrnk at 12:07 PM on April 7 [5 favorites]

Can you get the doctor to give her a discount?
posted by parmanparman at 12:40 PM on April 7

I'm so sorry to hear this. I know we have a ton of local Shame-On-You style reporters, due to our rich local news ecosystem, and while the State Insurance Commission and/or Attorney General's office are great ideas, Medical Mutual is also (as you probably know) a company with a big local profile, lots of sponsorships and a lot of local PR. Here's the quick list I was able to google: Good luck shaming those jerks!
posted by chesty_a_arthur at 12:40 PM on April 7 [3 favorites]

Some things I would look into:
--Social media shaming can work, but the story has to go "viral" -- sharing something with a few friends isn't likely to do it. So, I would try to work with a friend who's a good writer and good with social media to come up with a clear strategy here.
--Local news could also be a good option (either TV or print) -- the benefit here is that if they take the story, they will do the framing/advertising piece
--See if the specific drugs she needs have a discount program (I was able to get some asthma medication this way after my insurance denied it) and if there are any other ways to get access to the care without going through insurance. This can take some persistence/pushing people, which is frustrating, but also can pay off.
--The state insurance commission is also a good idea.

Finally, for all of the above, I would write down all the details and make sure you have the story absolutely correct and clear, from the medications needed to the doctor's specific recommendations -- you don't want one wrong detail to come back and bite you if the story does go viral. For example, in the post you have above, I'm wondering if perhaps you mean a different drug than Omperazole/Prilosec since that's easily available over the counter and when you search "omperazole graft vs. host" it seems graft vs. host is a possible side effect of omperazole rather than the omperazole being a treatment for it. So, it seems like something could be off with what you or your mom's understanding of the situation here is.

Wishing the best to you and your mom -- it is hell to deal with insurance companies when you really need to be focusing on getting better.
posted by rainbowbrite at 2:04 PM on April 7 [1 favorite]

What was the reason the insurance company gave for her denial? Did you go all the way through that process? Did you call the Department of Insurance in the state in which you purchased the insurance and log a formal complaint? The reasoning for the company's appeal is going to be very important here. If they have a legal or policy-related reason for the denial, social media shaming isn't going to help. Your state's department of insurance should have a consumer complaint phone number you can call. I would start there.
posted by nubianinthedesert at 2:20 PM on April 7 [1 favorite]

Are you saying there is no Leukemia support organization that will help you withthis? or Cancer org?

I thought they counciled on this but maybe I'm out of touch.
posted by cda at 6:11 PM on April 7

Call the Dept of Insurance for sure! And also your Mom's employer may have some sway if it's a work plan.
posted by fshgrl at 9:33 PM on April 7

You need a pitbull of a lawyer. I wish you didn't but you do.
posted by Chitownfats at 11:41 PM on April 7

If she's admitted for the clotting she'll be hanging out for a few days on an anticoagulant drip and then they may want her to take a self-injected blood thinner for a while.

Fortunately, most therapies are covered when you're inpatient. There should be a social worker on the floor, get with her and talk options and workarounds. Coming from a BMT nurse, it seems to me that after providing an allo, the hospital that you got it from has a very strong motivation to keep you going and it's in their best interest to not keep readmitting unless something's going really wrong.

I'm interested in this boost, what's the medical name for it? It's very possible that it may be a research intervention.

You're not in this alone. Feel free to PM for any questions about GVH complications, questions about meds, etc.

Fuck cancer.
posted by sibboleth at 4:37 AM on April 8 [1 favorite]

This is not a guaranteed trick but it would be important to question their judgements

Put them on a recording
Call them and then say, could you advise me the license number for the medical doctor that has denied the treatment? I would find it necessary to check with the medical board.

They will probably put you on terminal hold.

Call them again
Record them again
This time, let them know they are being recorded.

Repeat cycle of knowing who is the doctor on their end that can deny this.

I do not believe the insurance companies can deny things like this without having adequate knowledge/reasonable evidence to decline things like this (that's what I think). See if that helps with any pressure.
posted by iNfo.Pump at 9:08 PM on April 8

Omeprazole is available over-the-counter, so I'm not surprised your insurer doesn't want to pay for it.
posted by grouse at 5:45 AM on April 10 [1 favorite]

Your doctor should be the one fighting with the insurance company about this and arguing for medical necessity. Have they been calling the company to appeal?

Forget about the omeprazole, though - grouse is right.
posted by treehorn+bunny at 7:23 PM on April 11

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