Here we go again...IVIG request #2
January 1st, we started a new insurance plan. Originally, I was nervous about the change- we had great coverage and all of our specialty doctors accepted our plan. Peter's company has been fabulous with the transition and has assisted in many ways to continue our treatment and therapies that we have established.
With a fresh start, we decided to file a new request for IVIG. The Special Procedures staff that I had previously worked with made several phone calls, sent faxes, records, and a new script. A little confusion delayed the process, as one of the script companies associated with the insurance received the paperwork, but wasn't equipped to make a decision on specialty medications. Then, the insurance called me to inform me that the diagnostic code (Autoimmune Disorder-Not Otherwise Specified) was not specific enough to grant approval. They sent a new request to our physician for another diagnosis. After several emails and communication, our request was denied due to no response from the doctor.
We received the official denial letter in the mail today.
Our representatives told us that if they received a new request, they would expedite the process for approval.
So now we are just supposed to wait...again.
Well, surprise...I'm not so good at waiting. So Thursday, after hearing that our request was denied due to non-correspondence, I took that pit in my stomach and threw it another direction. I called the immunologist who had seen Hunter prior to Dr. G (in Sept 2012). To recap his visit, he made the following points in his note to our pediatrician:
1) Infection may coincidentally appear to trigger new neurologic problems.
2) There is nothing about the history consistent with PANDAS. The best evidence is that IgG therapy is inappropriate for PANDAS.
3) It is possible that the neurologic changes are due to post-viral autoimmunity, but there is no objective evidence to support that notion; no LP findings, no MRI.
4) The brief, modest course of steroids (done with Dr. K in early 2012) was unlikely to be immunomodulatory. The only way to determine if the steroids make a difference would be a double blind, placebo controlled trial. I would be willing to assist in such a trial.
5) I encouraged her to see Dr. E (neurologist)
6) I am unwilling to provide or sanction the use of IGIV at this time. If there was objective evidence or a strong clinical suspicion of IgG responsive disease on the part of a credible neurologist, I would help get IVIG for Hunter.
When I first read this letter, the first four points made me a little angry. I sat with this immunologist for an hour, with my labs and my charts and my notes from the beginning of it all. He told me that he had a hard time accepting a PANDAS diagnosis, and taking one step away with "atypical PANDAS" was not in his comfort zone.
However, over a year has passed since I have seen this doctor. And I can prove to him that number one, two, three, and four are most definitely true...and I have the data to prove it.
I followed recommendation number five- Dr. E was the neurologist I fought tooth and nail to get in to see, and the department wouldn't let me due to the fact that we started with her partner. However, by the grace of God, when I showed up for our follow-up, I was scheduled with Dr .E, and not the first neurologist. Dr. E sat down, told me to start talking and not stop until I had finished. I shared all of our information and she is the one that sent us to the neuroimmunologist, Dr. G. Dr. G is the one who ran the BLIND steroid trial (which this past immuno told us we had to do- see number four) and determined there was an autoimmune process occurring.
So looking back at his notes, I can debunk his number one through four with credible, telling evidence...and after checking off number five and going to one of the top doctors in the country (and a non-PANDAS believer) who agreed to treat Hunter with IVIG, I am left with the last number on his list: number six.
This weekend I need to compile the "objective evidence or a strong clinical suspicion of IgG responsive disease on the part of a credible neurologist..."
so that he can carry out his own number six...
and "help us get IVIG for Hunter."
If I thought our past appointments were important, I don't even know how to describe the importance of Monday at 2:45. I am going to prep like an intense job interview. I am going to have all of our charts, our data, our diagnoses, our treatment plans...and prove, once again, that Hunter needs this therapy.
It is validated.
It is documented.
Now I need someone to go the extra mile and follow through with a request.
According to our insurance reps that I spoke with this week, they don't even want clinical notes, charts, etc- all they want to see is a diagnosis that warrants treatment. A simple number code is what stands between us and this credible chance of recovery.
I can't give up. I cannot say I have exhausted all options until I have done just that. I know that we could walk in to this appointment and no matter how much perfection lies between my file folders, we might still leave that office with denial.
And then it might be the end.
But for now, we will tell ourselves this is the beginning.
We can't give up.
I Won't Give Up- Jason Mraz
http://www.youtube.com/watch?v=O1-4u9W-bns
You are Loved (Don't Give Up)- Josh Groban
http://www.youtube.com/watch?v=I-G8IfjPAII
With a fresh start, we decided to file a new request for IVIG. The Special Procedures staff that I had previously worked with made several phone calls, sent faxes, records, and a new script. A little confusion delayed the process, as one of the script companies associated with the insurance received the paperwork, but wasn't equipped to make a decision on specialty medications. Then, the insurance called me to inform me that the diagnostic code (Autoimmune Disorder-Not Otherwise Specified) was not specific enough to grant approval. They sent a new request to our physician for another diagnosis. After several emails and communication, our request was denied due to no response from the doctor.
We received the official denial letter in the mail today.
Our representatives told us that if they received a new request, they would expedite the process for approval.
So now we are just supposed to wait...again.
Well, surprise...I'm not so good at waiting. So Thursday, after hearing that our request was denied due to non-correspondence, I took that pit in my stomach and threw it another direction. I called the immunologist who had seen Hunter prior to Dr. G (in Sept 2012). To recap his visit, he made the following points in his note to our pediatrician:
1) Infection may coincidentally appear to trigger new neurologic problems.
2) There is nothing about the history consistent with PANDAS. The best evidence is that IgG therapy is inappropriate for PANDAS.
3) It is possible that the neurologic changes are due to post-viral autoimmunity, but there is no objective evidence to support that notion; no LP findings, no MRI.
4) The brief, modest course of steroids (done with Dr. K in early 2012) was unlikely to be immunomodulatory. The only way to determine if the steroids make a difference would be a double blind, placebo controlled trial. I would be willing to assist in such a trial.
5) I encouraged her to see Dr. E (neurologist)
6) I am unwilling to provide or sanction the use of IGIV at this time. If there was objective evidence or a strong clinical suspicion of IgG responsive disease on the part of a credible neurologist, I would help get IVIG for Hunter.
When I first read this letter, the first four points made me a little angry. I sat with this immunologist for an hour, with my labs and my charts and my notes from the beginning of it all. He told me that he had a hard time accepting a PANDAS diagnosis, and taking one step away with "atypical PANDAS" was not in his comfort zone.
However, over a year has passed since I have seen this doctor. And I can prove to him that number one, two, three, and four are most definitely true...and I have the data to prove it.
I followed recommendation number five- Dr. E was the neurologist I fought tooth and nail to get in to see, and the department wouldn't let me due to the fact that we started with her partner. However, by the grace of God, when I showed up for our follow-up, I was scheduled with Dr .E, and not the first neurologist. Dr. E sat down, told me to start talking and not stop until I had finished. I shared all of our information and she is the one that sent us to the neuroimmunologist, Dr. G. Dr. G is the one who ran the BLIND steroid trial (which this past immuno told us we had to do- see number four) and determined there was an autoimmune process occurring.
So looking back at his notes, I can debunk his number one through four with credible, telling evidence...and after checking off number five and going to one of the top doctors in the country (and a non-PANDAS believer) who agreed to treat Hunter with IVIG, I am left with the last number on his list: number six.
This weekend I need to compile the "objective evidence or a strong clinical suspicion of IgG responsive disease on the part of a credible neurologist..."
so that he can carry out his own number six...
and "help us get IVIG for Hunter."
If I thought our past appointments were important, I don't even know how to describe the importance of Monday at 2:45. I am going to prep like an intense job interview. I am going to have all of our charts, our data, our diagnoses, our treatment plans...and prove, once again, that Hunter needs this therapy.
It is validated.
It is documented.
Now I need someone to go the extra mile and follow through with a request.
According to our insurance reps that I spoke with this week, they don't even want clinical notes, charts, etc- all they want to see is a diagnosis that warrants treatment. A simple number code is what stands between us and this credible chance of recovery.
I can't give up. I cannot say I have exhausted all options until I have done just that. I know that we could walk in to this appointment and no matter how much perfection lies between my file folders, we might still leave that office with denial.
And then it might be the end.
But for now, we will tell ourselves this is the beginning.
We can't give up.
I Won't Give Up- Jason Mraz
http://www.youtube.com/watch?v=O1-4u9W-bns
You are Loved (Don't Give Up)- Josh Groban
http://www.youtube.com/watch?v=I-G8IfjPAII
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