Be Your Own Voice

So, here it the latest update…..

My PCP called me yesterday that I was able to schedule my PLEX. Everything was set up and I was good to go. So this morning when the infusion center opened I called to set it up and got a call back.

First off, they started with the fact that my insurance company will only pay $95 of the $4500 bill for each of the PLEX treatments. And that this is an issue.

So we called the insurance company. Here they used the wrong codes, so my insurance company said that they WILL pay for the treatment. So that will be okay.

Then … (and this is my favorite one)

The Pathologist who runs the plasmapheresis center thing … looked over my files and has decided that it is not medically necessary for me to have the PLEX.

So, my PCP is furious. And this doctor is on vacation all this week. So we have to wait until Monday to go in front of the board. My PCP feels that it’s not an issue of I dont need it but rather the cost of the treatment and my insurance. So my PCP and OPTHO are going to go in front of the board and argue the fact that they want me to have the PLEX and why I need the plex at least until the Imuran is effective as the steroids are so difficult since I am allergic. So my pcp and optho feel that by doing the PLEX following the guidelines that the MAYO is doing with the study is the best bet …. and they talked to people through the study to determine how to do it …. and now I get this doctor saying that he doesn’t feel it’s necessary and I just want to scream at him …. if he doesn’t know NMO/NMOSD then he needs to do some research. I would gladly educate him … with my files and files of research …. it’s a sad situation and I can totally understand other people’s frustration of having to deal with insurance companies and doctors … you would think that if a doctor is ordering it and the insurance company will pay for it .. there shouldn’t be an issue …. idk. It’s stupid.

So that is where we stand … instead of getting my PLEX this week like I was due to get and all ready to get set up to get … i am waiting around for doctors to get back from their vacations ….

At least I got to spend today with Aurora and her smiling beautiful face and there was a really scary but cool looking spider outside. I had to take a photo of it.

What I wouldn’t give for being able to see out of both my eyes again. It is so frustrating to be back to almost black … I can see some lights and maybe dark shapes but nothing worth mentioning really. I am terrified that one day I wont get to see this beautiful little girl …….. and I think that is what terrifies me the most ………..

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Just a bunch of photos of my girl eating a plum …. oh gosh did she LOVE it. I was surprised since she is so picky!!! I spent over half the day with her. And while it wore me out I loved it. We sang the Ittsy bitsy Spider Song and one two buckly my shoe on my kindle … watched Frozen…. so much fun with her. Just watching her in the walker chasing the dogs around the house made my day ….





So, I decided after everything happened above to focus this blog post on advocating for oneself.


First and foremost …. I find it important that you NEVER take “NO” as a final answer … or any answer. Your claim through your insurance company or through your doctors can get denied but we can use that as a stepping stone. I think it’s the case many times that these doctors/insurance companies will send out a denial letter in the hopes that the patient will: 1) forget that they got it 2) intend to file an appeal only to not follow through or, 3) file the paperwork improperly. If you don’t do the steps correctly, they win.. So you have to advocate for yourself and make it happen. You can’t just sit back on your laurels and hope that things will work out in the end. You have to be proactive. Get out there and make it happen. Fight for what you know you need.


If you get denied … Appeal! By this point I have come to the realization that they will always deny my treatments …. It’s quite simply that they refuse to take the steps to make it happen and so we have to fight for what we need. We have to advocate for ourselves. We have to be persistent in our determination …. That is what it takes to win an appeal.


First off … see that you have all of your medical records. Make sure that they are up to date and that everything is together and in order. This will make the process easier. Justifying need for the treatment is a step that we need to take … and for me is one of the ones that is taking the longest as doctors outside of the field of NMO are trying to say that I do not need a treatment when it has been established that I do and have in the past and it has worked in the past.


So, when it comes down to insurance companies and denials … they have to give you a reason for why they are denying you treatment. Typically these reasons are: 1) the treatment is experimental or investigational, 2) the treatment is not medically necessary, or 3) the treatment is not the standard of care. More than likely for the first round it will be because someone ‘on their pedestal’ has deemed the treatment medically unnecessary. What we need to do now is prove that it is medically necessary.



I found another blog that goes on to discuss the matter further …. And I think it’s worth reading so I am going to quote her here and site her blog page. We need to educate ourselves and others and we need to advocate for ourselves to get the treatment that we need.



“Show the progression of the situation and how options have been exhausted

I always try to base appeals on the phrases “medical necessity” and “medically necessary.” When you document a surgery or service that you or your family member needs: Be clear how it is necessary to daily functioning. Describe what will happen if what you are asking for doesn’t happen. Be sure to tell what you have tried already, and what has failed. Show how your diagnosis and treatment history has brought you to this place–how there is no other reasonable option to what you are asking for (or how the alternative is not preferable). Be complete but don’t ramble. Be sure to include diagnosis codes and treatment codes (your medical professional will provide these).

Doctors’ offices don’t always have the final say

I should point out that a doctor’s office may tell you that you will have to pay out-of-pocket. They may tell you that they have tried to get your service covered, it was denied and therefore this is the last word. It’s not. For example, my neurologist’s office tried to get my Botox injections covered. Their office appealed the first rejection. They were again denied. They told me that there was “nothing else they could do”; I would have to pay.

Undeterred, I asked for copies of my medical records. I called my insurance company and asked what I needed to do. Despite what the doctor’s office told me, I learned that patients often have a separate appeals process available to them. While physicians’ offices can often get services covered and can be very helpful in knowing what’s been a successful method of appeal in the past, they are not the only way to get services approved. In a case like this there is actually a financial disincentive for them to have insurance cover it; therefore, they may not be as aggressive as you will. What does that mean? If I had paid out of pocket they would have received almost three times the amount of money that they receive when compensated by my insurance company directly.

When the office tried to get the injections covered, the insurance company denied the request on the basis that this was an experimental treatment– not FDA-approved for this use. I provided medical history sheets from my medical file. I documented every drug I had take until that point to try to prevent migraines and the dates I took them. I explained the medical condition/situation that resulted when I had migraines. I told them how the neurologist felt the Botox might help me. I included the original letter he had written to the insurance company. I explained that if they didn’t cover this treatment a more expensive, more medically damaging situation would result– this would mean more claims and more expense for the company. In the case of the migraines I documented how much my “rescue medications” were costing them per month and how a reduction in those would easily pay for the Botox I was asking for. I showed through my history with the numerous failed attempts with other drugs that the situation had not improved and in fact the side effects from those drugs had been debilitating. I also showed the literature about preliminary success in clinical trials with Botox and my neurologist’s observations about its efficacy in others and the potential efficacy in my case. I explained I had no other choice, and while it might be not-yet FDA approved, Botox was actually on the verge of receiving such approval (I was proved right when it did receive approval for this purpose less than one year after my request).

Include all relevant information and send appeal within the required time period

This letter of appeal doesn’t need to be 3 pages long. In fact, even in my most complicated appeals I didn’t write more than a page or two at most (plus the inclusion of the supporting documents). Be sure to appeal/respond within the time frame they dictate. In the letter be sure to include: your contact information, subscriber number, and the doctor/hospital/treatment facility information the case reference number that they provide all relevant diagnosis and procedure codes

Ask doctors and staff for assistance, documents

Do not be afraid to ask your doctor and his/her staff for help: what tactics have they found useful? If there are multiple codes that apply which ones are the best to use? Do they have any sample letters for appealing? What has their experience been with your particular health insurance company?

Use the rejection letter as the foundation for your appeal

Take the rejection letter you received and read it carefully. Don’t just react with “it says no” and throw it away. It is vital; in it, the company must tell you why they are rejecting your claim (usually one of those three reasons I mentioned at the outset). This is the key to your appeal. You must address this issue. They’re telling you the basis, you need to fight based on that. Be thorough but don’t get off track.

Another good example of persistence in appeals came with a corrective band we used for Tristan’s quite-misshapen head (diagnoses of plagiocephaly and brachiocephaly). The facility we used for the DOC band told us that insurance claims were most often denied for this service. Indeed, the first claim was denied; they said the “helmet” to correct his misshapen head was for cosmetic reasons only. I appealed. I explained that because of his neck abnormalities the head deformity was an inevitable result of having his head fixed in one place. Because he was unable to move his head properly he had this inevitable result of a physical abnormality. I ended up having two helmets approved for coverage.3 Had I accepted the facility’s statement that “insurance companies usually don’t pay for this” or my first rejection letter from the company, we would have had to pay in full for both helmets. I should point out that I’ve seen success getting this particular service covered even when the plagiocephaly was not due to a unique condition like Tristan’s when the subscriber persisted with the appeal process.

You can appeal more than just a denied claim

– A facility that isn’t usually in-network may actually be considered in-network for some diagnoses. For example, Memorial Sloan Kettering Hospital in New York City is a hospital that specializes in treatment of cancer. Though it isn’t normally included in coverage by some health plans, insurance companies will often allow oncology treatments there under the Centers of Excellence program. Through this policy, hospitals that specialize in certain conditions are treated as participating centers (in-network). So, if you wish to have medical care at a facility that specializes in a certain medical condition be sure to check whether they are included in this special program.

-Prescription drug plans can be adapted. This is a big one. What do I mean by this? Just because your prescription drug plan says it will only cover a certain number of pills doesnt mean that’s the last word. My prescription drug plan said only 9 pills of my expensive migraine medication would be covered each month. The problem? I frequently needed more than that number. I decided to investigate. I called my insurance company and the administrators of the prescription plan and asked how I could get that number increased because it was medically necessary for me to have more than that number. They said my doctor could call and make a request. He called and they agreed to cover 18 pills. I received a temporary increase to 18 pills a month for one year, renewable each year by going through the same process. That saves me up to $2880 a year.4

-Additionally, numbers of physical therapy/occupational therapy visits can be appealed. Our plan covers 30 PT visits for Tristan per year. He needs significantly more than that number. When the 30 are up, I write and document the medical necessity for him to receive more based on his anatomical defects. I state the skills he is getting with the visits and how they are necessary for his functioning. The physical therapist sometimes needs to include a letter and our pediatrician needs to write a prescription for the services.

Be organized. Take notes. Document everything

No matter what drug, service, surgery, or treatment you are appealing, you must be organized, take notes, and document everything. The key to my system is my medical binder. Have one for each family member. To see how to organize this essential tool, read my blogpost here. Keep copies of your lab results, operative notes, and copies of all communication to/from your insurance company. Be sure to have a fully documented medical history. Save letters that were successful; if you need to repeat an appeal annually (like my migraine drugs and Tristan’s PT visits) then you will have a document that just needs minor tweaking. Take notes on conversations (including dates and full name of the person you spoke with) at the company or doctor’s office. I learned that tip from my grandfather, a court stenographer for over 50 years: always keep track of the date, time, and name of the person you talked with. It may not be enough to prove your case, but if you can say “I spoke with (first and last name) on (date)” it lends credence to the fact that conversation took place.

Obviously, this post is not a comprehensive list of all types of conditions and how to win appeals for them. I know there are many readers who have had/will have experiences different from my own. I cannot tell you what will work for you; I can only tell you what has worked for me. I hope that by doing so and sharing some of these anecdotes you will learn something that you can apply in your own case. I realized while writing this piece over the past few weeks that there is so much to say about it. I’d like to consider this post an introduction to the topic; I will definitely revisit it again in the future.”

^ See above blog at





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