Insurance is super fun
Insurance is super fun! [laughs] I now have two insurances, one’s through my step-dad and one through school. So now, particularly with the school claims because they come directly to my apartment address, I deal with all of those issues. By state law, my school insurance has to be my primary insurance, so they were the first ones billed for my surgery, and they actually denied all coverage at the beginning. I had several phone calls to figure out why there was a miss-listing of codes and all sorts of different things, so leaving messages with my name and my complaint and my service provider number and my date of birth, and a phone number to call me back. I got jostled to many different people, but we eventually sorted it all out and Boston was particularly helpful with submitting more information, but I definitely got the first little taste of how that works.
Sarah, young adult, Klippel-Trenaunay syndrome
Tips for dealing with insurance
I honestly think it’s persistence. Sometimes you get somebody on the phone who is just wonderful, and sometimes you get somebody who doesn’t know what’s going on, or doesn’t have the power to approve things, and in that case sometimes it’s best to call back. Keeping very organized records helps, so that’s something I started to do; I know my mom did a lot in the early years. To be able to say “I talked to so and so on the phone on August 30th and you said it was approved and then on September 25th, I got this bill for $30,000,” you really can’t rely on them to have it in their records that you called, that they approved it. You can get totally lost in that system of phone numbers and transfers, so you should always get a name of who you’re talking to, when you talked to them, and what the plan is. For example, “oh they’re going to call me back in a week, or I can call this number if I don’t hear.” People are like, “oh we’ll call you back,” and my next question is like, “if you don’t call me back, what am I supposed to do?” Because I don’t really think you can always count on them to do that. So I’ll always try to get a, like “ok well if I don’t hear from you, is this the number that I call, do I ask to speak to you, do I ask to speak to somebody else?” So definitely being persistent, keeping really detailed records, and any information that you have about the claim that you can provide them that they may not have is good.
Sarah, young adult, Klippel-Trenaunay syndrome
You have to be persistent
The current insurance company we have is pretty good usually. I’ve had about 3 dealings with them over the past three years over discrepancies in the bill. For example, the one surgery I had with the laser, all they read on the top line of the statement which said plastic surgery for skin lesions so they just automatically assumed that it was for cosmetic reasons and denied the claim. I called them up and they were like, “well you’re going to have to appeal it now” so I had my follow-up appointment, I went down to see the doctor and talk to him about it. I took the paperwork that they had sent me for the appeal and had it mostly filled out except parts the doctor had to fill out or that I had questions about actually how this was brought up on the computer, how do we word this or whatever. And he took the paperwork from me and said, “don’t worry about it, you’ve filled out what you need to fill out, I’ll have the office manager here work with me on this and we’ll appeal it, because this is not cosmetic. This was because you were having bleeding, these things were bleeding.” He took care of it, it took about 3 months. They ended up having to pay the bill, but you have to be persistent.
Lucy, adult, Blue rubber bleb nevus syndrome
A biography letter
I’ve learned that one of the things I could have done prior to this was I could have gone to the insurance company and had a biography letter made up from the surgeon that this bill is involving. Usually you need one or two letters from specialists that are taking care of you, and this doesn’t guarantee that they’ll cover it, or cover anything at all but this is something I don’t think people realize, and I didn’t even realize. You can go and say this is a rare situation, explain the circumstances, why you have to go to that specific surgeon and have this type of treatment, and it’s almost like an appeal before you’ve had the surgery and then get the bill. Then the insurance company can deny or accept it. Then as a patient you’re out of it; you may have a co-pay of $50 or $100 but you’re out of it then, so that’s one thing, if I have to use that surgeon again, I am planning on doing.
Lucy, adult, Blue rubber bleb nevus syndrome
I may have a problem in the near future
My insurance isn’t going to cover the custom-made garments anymore. I’m going to have to appeal it because the regular garments don’t work, it has to be custom. And I don’t know why they’re not covering it because the custom garments, even if I buy one every 2-3 months, it doesn’t even come to half of the durable medical equipment allotment, so I have to call them about that. They sent me a couple and then they told me so I have a couple months before I actually need a new one. So I may have a problem in the near future
Katherine, adult, Venous malformation