Another Health Insurance Horror Story

I think that this note, from a gal in a NMO online group that Ann and I belong to, accurately describes the what happens when health insurance companies run the show:

My insurance initially denied my first rituxan treatment (despite verbally confirming they WOULD pay). I went without rituxan for 3 years after that and I feel it was the biggest mistake I have made. My neuro did not advocate for me and I (stupidly) did not advocate for him to advocate for me (does that make sense?). Finally, after a really bad episode that landed me paralyzed from waist down, I decided to fight.

I asked my neuro to write a pointed and explicit letter detailing why I needed the drug and what would happen if I didn't get it, I wrote a letter detailing the same thing and how I had run out of options, I gathered info papers on NMO from the web (from doctors with respected credentials) showing that rituxan is effective for treatment of NMO, and my husband contacted the insurance liason from his company who acted as an advocate between us and the insurance company.

Believe me, I was ready to go to court-- that is how strongly I felt about it. Fortunately, they approved the request right away after receiving all that info. Please don't give up too soon. I just wish I hadn't--it has cost me a lot of mobility.

BTW, the insurance companies do not pay $20K for the infusions (that's what they want you to pay). The insurance companies negotiate a rate that is much less than that (still more than you would want/be able to pay). In my case, the rituxan (that they wouldn't pay for) was actually cheaper than the IVIG treatments they would pay for. Now doesn't that make sense?

A few lessons that we can glean from her experience:

1. Insurance companies do not have our best interests in mind.
2. We are responsible for our own treatment.
3. Doctors are often reactive and not proactive with insurance.
4. Bad stuff can happen if we cede treatment options to insurance companies.
5. We need to vigorously fight claim denials.
6. Computer programs routinely reject claims based on inaccurate information.
7. Share information with other people.. it may really help.

I hope that things will get better after some of the new health care reforms are actualized but I think that these lessons may be even more important in the future.

Do you have any insurance company stories? Ever been denied coverage?