Thanks all for your prayers and messages.
Our hearing was yesterday morning. It was grueling. The doctor who supposedly will make the decision is a family practitioner, not even a neurologist. And he really didn't seem to understand how to read the medical material. He kept referring to a study done on Rachel is the year 2000 and asking questions about why it couldn't be "this" or "that" and we had to keep pointing out to him that since the time of that study, she's seen dozens of doctors and ruled out all of those things. He was pretty stubborn.
Rachel's ped neurologist decided to participate at the last minute, and he was the best thing that could have happened during the hearing. He spoke for a half an hour (that's like $300 worth of his time!) and clearly talked about how little literature there is because Rachel's illness is so rare (yes she has Lyme which is a bacterial infection, but she also has a movement and seizure disorder which is getting worse and a compromised immune system). The biggest problem with getting the insurance company to pay for her treatment is that it's not like there have been big giant NIH studies with control groups, since there aren't enough people, let alone kids, like Rachel. We submitted many articles, but they talked about success in smaller groups and not always for the exact same set of symptoms.
The next step is that the insurance company sends the whole file out to an independent reviewer for another opinion. Rachel's neurologist was great about this too...he said to the panel doctor "And what if this person comes back and says there isn't any more literature...we already have several doctors recommending it...this next person is not going to find anything more than we've already found" The panel doc said "Well, we'll cross that bridge when we come to it." Rachel's neurologist also emphasized the importance of their making a decision soon to prevent more deterioration.
The Assistant Attorney General, who was with us at the hearing, felt it went as well as it could go, but he doesn't know what will happen. I was of course a total wreck during the hearing, but I guess that adds a "human element" to the whole thing (sad how all this has to be broken down into hearing language).
Anyway, it's hard to summarize everything here and I appeciate the moderators letting me post so off topic. I will keep everyone posted as soon as the next decision is made. The is pretty much the last stage of appeal so we are so hoping for the best.
Thanks again everyone.
Our hearing was yesterday morning. It was grueling. The doctor who supposedly will make the decision is a family practitioner, not even a neurologist. And he really didn't seem to understand how to read the medical material. He kept referring to a study done on Rachel is the year 2000 and asking questions about why it couldn't be "this" or "that" and we had to keep pointing out to him that since the time of that study, she's seen dozens of doctors and ruled out all of those things. He was pretty stubborn.
Rachel's ped neurologist decided to participate at the last minute, and he was the best thing that could have happened during the hearing. He spoke for a half an hour (that's like $300 worth of his time!) and clearly talked about how little literature there is because Rachel's illness is so rare (yes she has Lyme which is a bacterial infection, but she also has a movement and seizure disorder which is getting worse and a compromised immune system). The biggest problem with getting the insurance company to pay for her treatment is that it's not like there have been big giant NIH studies with control groups, since there aren't enough people, let alone kids, like Rachel. We submitted many articles, but they talked about success in smaller groups and not always for the exact same set of symptoms.
The next step is that the insurance company sends the whole file out to an independent reviewer for another opinion. Rachel's neurologist was great about this too...he said to the panel doctor "And what if this person comes back and says there isn't any more literature...we already have several doctors recommending it...this next person is not going to find anything more than we've already found" The panel doc said "Well, we'll cross that bridge when we come to it." Rachel's neurologist also emphasized the importance of their making a decision soon to prevent more deterioration.
The Assistant Attorney General, who was with us at the hearing, felt it went as well as it could go, but he doesn't know what will happen. I was of course a total wreck during the hearing, but I guess that adds a "human element" to the whole thing (sad how all this has to be broken down into hearing language).
Anyway, it's hard to summarize everything here and I appeciate the moderators letting me post so off topic. I will keep everyone posted as soon as the next decision is made. The is pretty much the last stage of appeal so we are so hoping for the best.
Thanks again everyone.
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