We’re in a current dispute right now with our insurance
We’re in a current dispute right now with our insurance. In our plan, anything that’s preventative would be covered under insurance, and all of these procedures that Gabriela had—you know, this isn’t cosmetic. This is all to prevent pulmonary embolism, to prevent further growth of her leg, abnormal growth. So everything that has been done to Gabriela has been to prevent something else from occurring. The insurance company deemed this as not preventative which I find to be ludicrous; it’s such a rare disease, I mean, who in the insurance company is sitting there who’s an expert on this disease that’s deeming this not preventative? I have the brightest minds working on Gabriela, and they deem it as preventative. The bottom line is that we’re still in dispute with our insurance. The insurances are very, very difficult.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
It has been a problem
Mom: We had one insurance, they paid for her compression stockings and then my husband’s company switched to a different insurance, and they didn’t pay for her socks, it comes out of our pocket, it’s $200 to buy them.
Dad: We’re still dealing with it; I have a couple things pending with our insurance right now, trying to get some type of amendment to their rule. It was prescribed by a doctor because the stocking has different strengths, different compression ratios. Our old insurance paid for it fully because it was prescribed, and then when we switched to the new insurance, like my wife said, they weren’t going to pay for it. Their understanding of an elastic compression garment is that it was a medical supply like Band-Aids, gauze, ace bandage wrap, and when this thing is being custom-made in Germany and it costs us roughly $235 every couple months or so, they won’t cover it to this day. And our doctor’s been very helpful to us because we’ve had them say that if she does not wear this compression garment, then she could actually have more medical issues which could drive more surgeries which could drive more medical costs, so it’s more of a preventative care issue for her to have it than the money itself. So I’m still dealing with it. I mean, we pay for it, but it has been a problem.
Parents of Erin, child, Klippel-Trenaunay syndrome
Dealing with insurance
From the beginning we have had things denied or not covered totally, so we’ve gone through the appeals process many times. Now she has two insurances; she has private insurance and then she has Medicaid as well, which is helpful. But now if the primary provider doesn’t pay for something, then Medicaid doesn’t, so it adds this other layer but can be really helpful if both things pay. There’s lots of insurance stuff. Once I pushed back a few times, and I think we did two or three appeals and we lost one and we won two, it felt like there weren’t as many struggles? I don’t know if that’s just coincidental or my perspective or whatever, but that’s really what it felt like. When we pushed back a little bit, things went a little more smoothly… Writing everything down is helpful. Documenting everything, keeping all the records. Keeping everything, documenting, keeping a written list about what’s happened, and then getting documentation from the doctors. That’s usually what you have to do.
Mother of Riley, child, CLOVES syndrome
We fall outside because we make too much
The only thing we’ve run into with insurance is the possibility of one of us having to change jobs or move jobs or lost a job… With the state care or something like that to help subsidize it, we fall outside because we make too much which, I wish that was the truth, but we don’t fit in the guidelines for that type of care. If we wanted to price out care to buy insurance separately, you know outside if we lose the job or anything like that; we made ourselves aware of how much the cost would be additionally for us. There’s an insurance that no matter what, she can have it regardless of condition
Father of Charlotte, toddler, Lymphatic malformation and high-flow vascular lesion
His frustration has come out in other ways
We do have some in-home treatment that’s starting for him because of all his hospitalizations and surgeries. His frustration has come out in other ways, in some behavioral issues. Thankfully we have Medicaid. In some ways Medicaid is for people with low income, so I’m thankful we have that, but then at the same time if my husband does get a job where income goes up and we lose that assistance, this therapy is only available for people with Medicaid. So right now, it’s starting next week, so a clinician will come to the house and work with him and help him to find other ways to deal with his frustrations, and to teach us how to intervene when things are getting hard for him.
Mother of Liam, child, Glomuvenous malformation
I’ve learned how to word things with insurance companies
With insurance companies, sclerotherapy comes up as a cosmetic procedure every time we try to get it through. It takes a lot of phone calls, a lot of pushing, but so far everything’s been covered. I think that a lot of times insurance companies or whoever you’re speaking to, even your case managers, don’t know what lymphatic malformation is. That’s always been the biggest problem, trying to explain it to them, and like I said, the code comes up cosmetic. I’m like, “We’re not trying to get rid of a varicose vein in the back of her leg, we’re trying to reduce the size of her tongue to get her trach out.”
I’ve learned how to word things with insurance companies, too. If you throw that in there, that we’re trying to get rid of the trach so they don’t have to go over the nursing and all of the supplies, to try to make it sound appealing to them. Also, there’s been some issues too because of being out of state. They’ll say “Why are you going up there if you’re out of network?” That kind of a thing. That can be a big added stress on top of the whole thing, because you just figure that the whole situation stinks to begin with and now you’ve got to fight another battle…. It helps just being persistent because I think a lot of times they hope that you don’t fight it on denials, and you know, just appeal, appeal, appeal. Really, just be persistent with it and don’t give up.
Mother of Ashley, teenager, Lymphatic malformation