Insurance Rejections

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Forum Supporter
Nov 6, 2022
Sugar Land
My pals has had 2 big insurance rejections this week. The first was the ventilator. The insurance says no even though he qualifies bc his FVC(?) is below 50%. The pulmonologist asked for an AVAP ( not sure if that the right term) but insurance says my Pals only needs a bipap. The drs response to the denial was to wait until we complained and then appeal (also denied) and now we have to wait until Monday to find out the next steps. He still hasn’t said why he asked for the more expensive machine. We can pay for the cheaper machine out of pocket. At this point, something is better than nothing, right?

The second rejection was RADICAVA. Insurance said breathing had to be over 80%. The ALS clinic response to the denial was “oh well…we tried.” No appeal will be done.

When my pals was diagnosed in Nov 22, I was terrified, but his he could breath and functionality wasn’t too bad. Then I started looking at ALS sites and there was hope, not of a cure per se, but hope for time, which is important for our 3 school aged kids. One site even said something like the era of “we can’t help you so home to die” was over. I kept saying he’s not dead so enjoy today. Well…now I’m rapidly loosing all hope and I feel there is no time. In the 6 months since his diagnosis, my husband’s breathing has become very compromised but we can’t get a machine and he is loosing functionality but he can’t get Radicava. We even tried to buy a bipap in January before his breathing got real bad and were told we had to get a prescription. Now we have a prescription but it’s tied up with the insurance denial. No one at the ALS clinic seems to care. ☹️ Not sure what to do. Any ideas?

Thanks for letting me vent.
I am sorry. May I ask what kind of insurance? Commercial? Original medicare with a part d? Medicare advantage?

i know someone here with commercial insurance got results when they complained to their state insurance commission

the radicava rule isn’t uncommon for new starts. When radicava was first approved a lot of companies used the criteria for trial entry which included breathing over 80. My neurologist did say last summer they had to appeal denials for every radicava start. But she also said that it wouldn’t be worth trying and appealing for me. My issues are progression rate and time since dx. I would at least ask why no appeal. Are they lazy or truly think it not possible?

the bipap issue sounds like pure ignorance. Did your neuro ask for a peer to peer. The problem can be the peer isn’t really one maybe not even a neuro. But at least the person should have some medical education rather than some administrative person who is reading pals need bipap ( not cpap implied) as pals only need bipap and nothing enhanced
You might ask your clinic to send you a copy of the form they submitted. When I've done this, I've discovered that the provider left important stuff out.

I think there are some programs that cover some specialty ALS meds short term.

You might try to get in quick with a pulmonologist who will order the bipap for you. When I'm stuck on something like this, I book appts within a reasonable radius and cancel the later ones once I know that someone is going to bat for me.

Synapticure might be something to consider. They are effective with appeals.
When an rx includes "volume control" mode (AVAPS or iVAPS) and/or backup rate, both of which are best practice in ALS, it flies under a category that's frequently abused and has been the subject of many national audits. If you ask another doc to write the same rx, it could be flagged and prevent either rx from being processed for reimbursement in a timely manner. So I would try to play out the string with what is already in progress.

If you have a commercial policy or Medicare Advantage, I'd call the plan and ask to be assigned a case manager., then ask them to review the denial. Usually these are nurses who should at least be able to determine that your husband qualifies for NIV, at that FVC and an ALS dx. It's all on line. As Nikki says, your doc's biller should be able to double-check that all the required criteria are documented. Let me know if you need help on that.

If necessary, you can pay cash (I can recommend Second Wind CPAP for discounted machines) and then fight for reimbursement, but shouldn't have to. However, with an FVC<50%, your husband needs a machine sooner rather than later.
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