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Moving Mountains Paralyzed: How to Win Insurance Battles

The Quirky Quad, Ali Ingersoll, shares her personal story of her long battle and victories with insurance giant Blue Cross Blue Shield.

When I think of insurance companies, the analogy of a goat herder comes to mind.  A goat herder will watch out for its flock as long as they produce enough fur for the goat herder to line his financial pockets. The moment a goat gets out of line or stops growing fur, the herder will slaughter the goat and eat it for dinner.

Similarly to insurance companies, as long as you pay your premium and don’t step out of line, an insurance company will offer you basic protection. However, if you start creating a commotion, appealing everything, and asking for more — insurance companies will find some way to slap you with financial bills that seem unimaginable.

Since my accident 7 years ago, I’ve been a goat being slaughtered by insurance companies, but I’ve also been a goat that’s managed to break free. Navigating the insurance companies to get what you need, especially when you are paralyzed, requires voracious tenacity, extreme dedication, a lot of hard work, patience, and knowledge of how to work within the grey areas.

Generally, when you have a claim that is denied, you have the right to appeal the insurance company’s decision. There can be 2 to 3 denials from the insurance company and you have to stay on top of them, call them on a weekly basis (if not more), write letters of medical necessity with your doctors, and keep recorded phone calls. The insurance company can eventually give you a final denial, and they want you to believe that you have no other choices. This is where it can get tricky. You definitely do have more choices. You can go above an insurance company’s head to your state’s Department of Insurance and appeal the insurance companies final decision again. This can be a lengthy process, but if you’re patient and diligent about being “pleasantly persistent,” you can move mountains.

Two major examples of experiences I’ve had to deal with, one in which I majorly messed up, and another which probably took a little piece of my soul, but resulted in victory for the patient!

1.) My Major Mistakes

In 2015 I developed a major pressure sore over my tailbone resulting in a giant hole in my behind. To make a long story short, I needed a surgery that would remove my tailbone called a coccygectomy. I scheduled the surgery for January 2016, fully aware that health insurance plans were changing in the new year. In December 2015, I relentlessly called my insurance company, and the hospital where I was having surgery, to make sure the surgery was in-network for the coming year. I was verbally assured over and over by both the insurance company and the hospital that this would be no problem. This was my first egregious mistake, I did not get it in writing. A huge NO NO!


In January 2016, I went in for surgery feeling confident that my maximum out-of-pocket expense would be about $2,000 after my deductible was met with co-insurance. To my utter surprise, I was sent a $15,000 bill at the end of January 2016. I had no idea what I had done wrong.


After about 25 phone calls, I learned that this particular hospital was no longer in-network for 2016, despite all the effort I put in to making sure that it was. So, I downloaded the appeals form from my insurance website and wrote a very detailed letter of explanation with dates and times of phone calls I had made to the insurance company. I patiently waited for 30-60 days, as this is the typical time for an appeal to be processed. In the meantime, I had a $15,000 bill the hospital was trying to collect on, and I worked with their financial department to explain that I was appealing Blue Cross’s decision.

Naturally, the hospital did not care about my appeal process and kept threatening to send my bill to the collections department, and ruin my credit. They really had a knack for scaring the hell out of a patient who was laid up in bed, healing from a major surgery, and in complete distress. It was atrocious and disappointing.

I didn’t give in to their threats, and I waited patiently for the appeals to go through. I was trying to appeal this claim to move from out-of-network to in-network. I had to appeal three more times, with doctor’s letters of medical necessity, conversations I’d had with insurance companies over the last few months, and I was reaching a point of near insanity.

Several months later, I received a $3,000 check in the mail from Blue Cross Blue Shield. I was completely ecstatic as I thought I had won. Here’s where I made my second terrible mistake. I cashed the check and I sent it to the hospital. I thought that was it, end of story. I was wrong on so many accounts.

What Blue Cross Blue Shield had done was sent me their “allowed amount” for the bill, which was still actually processed out-of-network. I was still left holding a $10,000 bill owed to the hospital. The hospital couldn’t do anything for me as they said the insurance company’s decision was final, and because I had cashed the check, I was now responsible for the $10,000. I was completely sick to my stomach and started to panic.

I quickly sent another appeal, which you can keep sending over and over to delay what you owe for many months, unless the insurance company gives you a letter of final denial. You can even appeal this further, but with more complication. I went back and forth with Blue Cross Blue Shield for eight straight months, while this $10,000 bill from the hospital was now headed towards collections.
I figured I might have a better shot at negotiating with the collections department for $.50 on the dollar rather than paying the entire bill. Of course, there was the threat of my credit being ruined, but at the time, I didn’t have the funds to pay the bill.

Eight months later, after at least 45 calls to Blue Cross Blue Shield, ten plus hours of being put on hold, I finally won the battle. Blue Cross Blue Shield moved my case from being out-of-network to in-network, but didn’t even tell me. They ended up paying the hospital, but it wasn’t until I investigated that I learned I no longer had a bill to pay with this particular hospital.


It was a completely maddening situation, and the advice I can give with respect to when your insurance company sends you a check, is to find out exactly what they’re paying for.

2.) The Big Kahuna

“This story is probably one of my most trying and heartfelt victories I have achieved so far with respect to insurance successes”.

When you’re paralyzed, many of your muscles don’t work and become atrophied, which can lead to pressure sores, loss of blood circulation, etc.

There is one company in particular, who is a leader in their field, called Restorative Therapies located in Baltimore, Maryland. This company has a functional electrical stimulation bike called the RT300. In my opinion, electrical stimulation for anyone who has paralyzed muscles is such a crucial part of an exercise regimen to keep the muscle mass in your legs. The medical benefits are countless and too lengthy to get into for this particular article. Suffice to say, I find it a key piece of my exercise routine to stay healthy.

Unfortunately, insurance companies do not find electrical stimulation to be medically necessary. Even with all the research out there, it takes insurance companies a long time to deem anything “medically necessary”. So, the challenge is that these bikes range from $20,000-$30,000 brand-new from the company. I’ve worked with these bikes the last 7 years, and I can’t speak highly enough about them. When I was first injured, I managed to get my hands on one, but over the years I needed an upgrade, and insurance would not cover it. You should see my legs, they don’t even look paralyzed — other than the fact that I can’t move them.

So, I set out to work with the Restorative Therapies team to see if I could get a brand-new electrical stimulation bike approved by my insurance. I knew this battle would not be an easy one, so before I even started down the long road, I prepared for war. I knew it may take over a year, we would run into all kinds of roadblocks, but we needed to create a tactical plan of attack!

In September 2016, I started working with the company to try and get this bike approved. To no one’s surprise, the bike was denied the first several times in a row.  We kept appealing all the way up to December 2016. Unfortunately, I had a major setback as Blue Cross Blue Shield was again switching insurance plans for 2017. This meant all the hard work we had put in so far was wiped clean. We had to start all over in January 2017.  I worked with Restorative Therapies and we started the process all over again in January of 2017.  I was in the insurance race of a lifetime!

After about four months, several appeals, and all denials from Blue Cross Blue Shield, it seemed like we were out of options. Blue Cross Blue Shield gave a final decision to permanently deny this case because the bike was deemed “medically unnecessary” through a panel of Blue Cross Blue Shield’s supposed “Medical Experts”. Most people would have given up at this point, but I did not, nor did Restorative Therapies.

We decided to go above Blue Cross Blue Shield to the North Carolina Department of Insurance. Every state has their own Department of Insurance. Restorative Therapies filed a copious amount of paperwork with cited cases of the medical benefits of electrical stimulation, as well as my past history with this particular bike as well. I know Restorative Therapies worked a lot on their end with the Department of Insurance, but I too, spent hours on the phone with them justifying the needs of this bike.

I made the argument that atrophied muscles lead to loss of blood flow, skin degradation, gastrointestinal issues, bone frailty, etc. I made the case that the long-term benefits of this bike far outweigh the short-term costs, because the long-term issues created by a lack of working out paralyzed muscles would result in me spending much more time in the hospital, more surgeries for pressure sores, nursing home recovery, etc. I tried to make them see it from a financial standpoint, not just a patient perspective.

In August 2017, I received the most welcome phone call of the year. The North Carolina Department of Insurance called to say they had overturned Blue Cross Blue Shield’s final denial. This meant Blue Cross Blue Shield would be forced to allow me the bike. It seemed so simple, but it got much much more complicated. Before I learned how much more convoluted this process could get, I received a call from a lady at the Department of Insurance to congratulate me personally on such a victory. She told me that they had denied other folks requests in the past, but approved me because of the argument I presented about the long-term costs the state would have to pay with potential hospitalizations due to the lack of preventative care. I was very heartened by this.

I then received another letter from Blue Cross Blue Shield saying I was approved for the bike, but only out-of-network because Restorative Therapies is not contracted with Blue Cross Blue Shield. This was quite a disaster because in 2017 my out-of-network maximum out-of-pocket cost was $29,000, instead of a few thousand dollars in-network. Clearly, this didn’t help me very much. We then went to work on trying to get Blue Cross Blue Shield to consider Restorative Therapies as an in-network provider. This is again was a very complicated process, but we got it done.

By November 2017, I thought we were free and clear. However, we ran into another major snafu. When Blue Cross Blue Shield works with an in-network provider and is sent a bill, generally Blue Cross Blue Shield evaluates the cost of anything, whether that be durable medical equipment, catheters, etc., based on invoice amount. However, they decided to become very fresh and sneaky with us. They said my allowable amount was only $6,000 and we could not figure out how they got that number. It turned out, they were using an obscure, miscellaneous medical code for some electrical stimulation unit, because this particular electrical stimulation bike by Restorative Therapies, called the RT300, did not have a specific code. This is actually where most of my time ended up being devoted – the 11th hour to getting this bike approved.

What was even sneakier was that I think Blue Cross Blue Shield was expecting me to cash the $6,000 check. I absolutely did not! Had I done this, I would’ve been left holding the bag for the remaining $24,000 invoice to Restorative Therapies.

Fool me once, shame on you, fool me twice… you get the idea.

I kept it in my lockbox because had I cashed this check, it would have been game over!

I spent dozens of hours on the phone with Restorative Therapies’ claims specialist and Blue Cross Blue Shield. We kept speaking with supervisors, managers, etc., and no one could tell us about this miscellaneous code they were using for the bike. It was a complete mystery, extremely maddening, and was starting to make me pull my hair out.

We kept talking to higher up managers at Blue Cross Blue Shield, and they kept giving us the run around, and telling us that the $6,000 was the final decision, but nobody could figure out why or who had come up with it. Fortunately, Restorative Therapies reached out to a guy who also got his bike approved over the last year, and we learned that we had to file yet another appeal, to appeal the fact that Blue Cross Blue Shield was basing this piece of equipment off of a random medical code, and not the actual invoice amount of $30,000. I know it sounds utterly confusing, and it is!

I called Restorative Therapies and Blue Cross Blue Shield several times a week in the month of December 2017. We were coming to the end of the insurance year cycle, and I was afraid I was going to have to start all over again. Excuse my French, but I almost lost my shit!

Fortunately, I did learn that my new plan for 2018 would remain the same, so whatever claims I had processing in 2017, would continue to be processed in 2018.

Anyway, when we finally submitted the last appeal, I lost count at that point how many appeals we had filed, I finally received a $27,000 check in the mail from Blue Cross Blue Shield. When I opened the envelope, I was expecting another bill as usual, but I was in complete shock. I was happy, I was excited, I was utterly exhausted, and I felt like I had just run three marathons in a row.

I was having trouble comprehending what had just happened… damn it, I WON! I just couldn’t believe it. I called Restorative Therapies five minutes later and we were all pretty much in tears that over 16 months later, we finally had won this battle.  Then there was a matter of the co-insurance, which I owed for the remainder of the several thousand dollars to Restorative Therapies. They have such a fantastic team there, that they have allowed me to trade in my old bike.

What does this mean?  After 16 months of hard work I’m getting a $30,000 bike free of charge minus a small piece of my life I gave to the insurance company.

CONCLUSION

While this was a huge success story for me, I will tell you that I have lost many battles, but I have learned over the years that you absolutely have to keep appealing, keep calling, and then calling some more. You have to be absolutely tenacious with these insurance companies. Honestly, I hate to say it, but they don’t care about you, they will try to save a buck wherever they can, and if you’re not going to be your own advocate, then you’ve got to color within the lines. Personally, I love to color outside the lines.

Many of us with spinal cord injuries spend a lot of time at home, and therefore, I believe, have the time to be tenaciously persistent, because who else is going to do it for us?


With respect to this particular RT 300 functional electrical stimulation bike, I hope I am just one more case in the arsenal that one day forces Blue Cross Blue Shield to make these electrical stimulation bikes much easier for patients to get. Perhaps it was a baby step in the insurance world, but it was a giant leap for me!

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Ali Ingersoll: PUSHLiving Writer Ali Ingersoll is a delightful and beautiful young woman who is famous for her China Quad Diaries where she documented her fascinating trek to China for spinal surgery that would not be attempted in the United States. She has now embarked on her newest endeavor, aptly named, Quirky Quad Diaries here on PUSHLiving in which she will delve more into sexuality, dating, and generally sassy life adventures. Ali, who loves to make people laugh, likes to do things "just for the story", and "even if this is a terrible idea, remember it is for the story!" So be sure to follow along as this highly intelligent lady talks about medicals outliers, stock trading, health, dating, pain management and how she has adapted in the six years since her C-6 injury.