“I just know you’re going to do a blog post about this!” my friend Lisa told me. Yes, I knew I would. After all, any time I learn something that benefitted my child and could potentially help other children, I want to share the information. Particularly when it comes to navigating a difficult system. And insurance and insurance appeals definitely meet the criteria of difficult.
I can’t believe that it has been just about a year since we won our appeal. I do know that it had an incredible toll on our family and my emotional and physical health. That’s why I’ve been so slow to not only do this post but get back into gear with all things on the blog and podcast. I was running full throttle for so long, that I just needed a break. From everything. Sharing what I can for anyone having an insurance appeals issue.
A brief history.
I won’t bore you or invade my son’s privacy by sharing his medical diagnoses and conditions. If you want to skip over this part, just scroll down until you see the heading about Insurance Appeals.
Just know that he has a serious seizure disorder. Way beyond just “he has epilepsy.” Which is serious, I’m not trying to devaluate anyone’s experience. But with his condition, more than half of the recorded deaths are from seizures–either SUDEP or status epilepticus. And, it often takes them at a very young age. It’s not a kind of epilepsy that you learn to live with, it kills you.
You know all those pictures you see on Facebook, kids holding up signs that say “6 months seizure free!”? Yeah, my kid wasn’t ever going even 6 minutes without a seizure. Basically, his brain was in a constant state of seizing and recovery. He had stitches multiple times from seizure falls and wore a helmet. He slept about 16+ hours a day because of his poor sleep. I often slept with him. It helped alleviate my SUDEP fears. It affected every part of our life–from attending sports events for our other child to canceling family vacations and more. Our situation was dire.
We had been all up and down the east coast. Each neurologist or epileptologist would just shrug and say, “He’s always going to have a lot of seizures.” That wasn’t acceptable to me. We couldn’t live like this. Kevin wouldn’t live like this.
He tried various medications, every option thrown at us, we tried. (If you email me and ask me if I’ve ever heard of cannabis for seizures, I will hunt you down to punch you in the face.)
I knew of other moms dealing with the same struggle. Both opted for the corpus callosotomy. In one child the CC was completely unsuccessful. In the other child (both were boys Kevin’s age btw), the mom said, “Yeah, sure, it stopped his drop seizures but he’s still having 50 other seizures a day.”
A ray of hope. The RNS device.
I was vacuuming my living room and my ear caught part of a segment, something about seizures. When you have a kid like mine, any time you hear anything about seizures, you listen. Because we were desperate. The segment is below.
As you can see, that video is dated April of 2018. By June, I was sitting in that neurosurgeon’s office in NYC, pleading our case. And learning. I learned two important things that day. One is that the RNS is only FDA approved for adults, and only for focalized seizures. The other is that I found a neurosurgeon who believed in Kevin and believed that he deserved a chance at better.
By June of 2018, Kevin had an SEEG, by this same neurosurgeon. An SEEG pinpoints where seizures are coming from, in the brain. An EEG is on your scalp. An SEEG is on your brain. They actually drilled 12 holes in K’s skull. This is how desperate we were. I was allowing, no begging, a neurosurgeon to drill holes in my baby’s skull.
At the end of that, he determined that despite there being very limited evidence, that Kevin was a candidate for the RNS. There were only a few case studies out there, but the results were promising. Plus, it was less invasive than a CC, not destructive to the brain like a CC, and reversible if it didn’t work.
Click the blue button to read Kevin’s full story here, in Spectrum Magazine:
Our only hurdle would be to get off-label use approval and insurance coverage. That is what the pediatric patients were doing.
I’ll never forget the PA’s words when they were delivering this news.
“I hope you don’t have Aetna.”
And so the Insurance Appeals begin.
So, here’s where I’m going to get into how I applied and battled Aetna. My tips are in no particular order. I am not an attorney or insurance industry expert. However, I am an experienced advocate and lobbyist, so I understand persuasion and persuasive writing. I consider myself smart, yet I was astounded at how much is out there about insurance appeals that I didn’t know. Or, much like the IEP process, how much there is to know.
I think that you too will be astounded at what is currently perfectly legal and acceptable when it comes to insurance company practices. I hope that this will motivate some to more closely scrutinize who they vote for. Clearly, our politicians have been on the take from insurance corporations when it comes to making laws that apply to them.
Filing Insurance Appeals
In no particular order, here are some things to know and remember if you are pursuing an appeal with your insurance company.
- Learn what the IRO is and use it. IRO stands for Independent Review Option. This is how we won. I went through all the steps, and then your last option is the IRO. Important to know that this IRO option for patients is a provision of ACA. If ACA goes away, as the GOP is trying to do, so will the IRO. Then, insurance companies will get the last say on these decisions. Not patients, not doctors, insurance companies will determine what care you receive. You can learn more about this option at Health Care dot gov. It is also called an External Appeal Review. Basically what it is, is this: you go through all the levels of appeals with your insurance company, then your last option is to send it to an independent, external reviewer. Their decision is legally binding. Win or lose, that’s it. The external reviewer in our case said, “This is the family’s only option in an otherwise intolerable situation.”
- Ask for the same specialty reviewer. In every level of appeals, put on your appeal “Please have this appeal reviewed by a same specialty reviewer.” My son’s second denial came from an ob/gyn. Yes, really. An ob/gyn denied my son’s brain surgery (yes, it’s legal). She knew nothing about brain surgery, so she compared our claim to Aetna policy. With a same specialty reviewer, you have a better chance of that person at least reading and understanding the claim.
- For insurance companies, deny is their default. They do not make money paying out claims. Their go-to is to deny. For them, it’s a numbers game. They create a plan based on what percentage of people will participate and use it. For the first levels of appeals, they aren’t even looking at the specifics. Their reviewers look at your request vs. what is in your health care plan. Our first denial said just that. “It’s not in your plan.” That was it. No mention of Kevin and what he needed. (Again, if ACA goes away…this will be standard practice, insurance companies getting the final word.)
- You do not have health insurance. No, really, stick with me here. None of us has health insurance. We have a membership in a health care plan. Seriously, go look at your information right now. I bet you dimes to donuts, nowhere on there does it say ‘insurance.’ It says health plan. This is important for your mindset. We think we have insurance. We don’t, and that thought clouds your judgment. You purchased a health care plan and you were given a giant list of things that are included with your health care plan. I was asking for something not included in my plan. It’s no different than going to your local YMCA and asking them to include free massages and poolside cocktails. It’s not included with your membership. You have to know what you’re up against. We do not have health insurance. Again, I could rant all day long about health care in this country but I won’t. Please know who and what you are voting for.
- There are such things as “Health Insurance Advocates.” How crazy is this? There is an entire cottage industry set up so that paying customers can fight with their ‘insurance’ company! Yes, you can pay an advocate to help and guide you through the process, so that you can get coverage. That you already pay for. This is why I now always put ‘insurance’ in air quotes. See number 4. We do not have insurance. I used a company that was actually a perk through my husband’s employer. But do a search and determine if it’s for you. Ours didn’t really do much, it was comforting to have though. I don’t think she had faith in me though. I think that she thought that Kevin should have the surgery. I know she didn’t think that we’d win.
- You are going to have to pick one person (you or spouse) to be the Team Leader or Project Manager or whatever you want to call it. It consumed me for months. Our neurology team helped us tremendously, but they’re busy. I had to call and remind them of deadlines, do follow-ups, stuff like that. Dedicate one folder and notebook and create an email folder just for this project. Pay attention to deadlines, as your appeals process will have them. Some are as short as 30 days which goes by very quickly!
- Your medical office should help you. They have done this before. They are the experts. Your doctor should be able to provide data–studies, case studies, trials, etc.–that make your case. Doctors and their staff also know many of the keywords and phrases to use to help make a stronger case.
- When you receive a denial, you will receive appeals information with it. Read it!
- Try the media. This goes against what I preach for the media and IEP issues. But, public sentiment is much different when it comes to giant corporations denying needed medical care. For me, it helped garner helpful community support, and some insurance industry experts reached out to me to help with our appeals.
- You can also use social media. Due to my friends sharing my story, a few attorneys in this specialty reached out to me and we were ready to use them if necessary. But be careful, you don’t want it to backfire. Stick to the facts, and you don’t want to be the crazy person tweeting 100x a day or tagging them non-stop. A few solid, factual posts that get shared are much better than 1000x tweets or posts of your own.
- If you end up reaching the Independent or External review option, this is the portion where you, the parent/family member can send in your appeal to accompany what goes with the documentation that your doctor’s office will send. I spent days working on it. Take your time. Do your best persuasive writing. I included pictures of life with Kevin before and after seizures. There were pictures of his bruises, his stitches and also how “he used to be” before seizures. The difference is striking, I still can’t read the appeal without crying. I had his 10-year-old brother write a few sentences about how his life is affected and what he wished for his brother. PULL OUT ALL THE STOPS. This is it. Win or lose, this is your final appeals option. Give factual, concrete examples of your life to make your case, and why this medical procedure/medicine/surgery is necessary. If persuasive writing isn’t your thing, find a friend or family member to help and proofread and edit.
Give it all you’ve got…and then give more. If I can do this, so can you.