If you’ve ever applied to college you’ll likely remember waiting anxiously by the mailbox for that large envelope, which was filled with hopes and dreams of your acceptance letter into the school of your choice. The small envelope on the other hand, filled with dread and disappointment, meant that you were likely going to have to fall back on your Plan B School.
As the years roll by and you grow up that distant memory of the large envelope stays with you. It certainly stayed with me. Over the last several years after fighting health insurance battle after health insurance battle I quickly came to realize the large envelope in your mailbox was the one filled with despair, rejection, and disappointment. I dread that big envelope in my mailbox that has Blue Cross and Blue Shield labeled in the top right corner.
Over the past several months I’ve been tirelessly working on two major insurance battles, which has taken my every waking moment to push forward on while simultaneously building up my disability advocacy career from every angle I could think of. Every day as I would roll down to the mailbox my throat would get a little bit tight, my blood pressure would start climbing, heart racing, and as I was watching whoever was helping me open the mailbox that day turn the key I waited in eager anticipation for either the small envelope or the large envelope.
The last two battles I’ve been fighting have been for the VitaGlide, an adapted physical exercise rowing machine, and a total hospital electrical bed. Blue Cross and Blue Shield had initially rejected both requests. The total hospital electrical bed was rejected on the grounds that it was not medically necessary and the VitaGlide on the grounds that it was a non-covered benefit. I’ll explain the difference in a moment, but I’ll start out by saying when you are rejected on the basis of something not being medically necessary you have many more avenues to pursue for appeals than you do if you get rejected because an item is a non-covered benefit under your insurance plan.
Let me tell you my story …
Total Hospital Electrical Bed
Several weeks ago I received a small envelope from Blue Cross and Blue Shield and I was absolutely elated. I had initially been rejected on the grounds that a total hospital electrical bed for a quadriplegic was not medically necessary for my physical condition. Really? I begged to differ and made quick work of navigating my way through the labyrinth of the appeals process. To be quite frank, if a piece of equipment or service really is medically necessary for your condition, and insurance rejects you on the basis that something is not medically necessary, you have many more chances to plead your case.
For a number of reasons including choking, transferring on a level surface, pressure relief, swelling of the legs, etc. a bed that has the ability to put the head up and down, the feet up and down, the physical bed up and down – is absolutely medically necessary for someone who is a quadriplegic.
Therefore, when I was rejected I was not really fazed because even if my insurance provider rejected me to the highest level I knew I had the ability to go above their head to the Department of Insurance to plead my case with an external review. Thankfully, it did not come to that.
Crafting carefully written letters of medical necessity, personal patient letters, gathering medical professionals to work with me, etc. is a carefully balanced dance of both art and science. It is a skill I have honed in on, but it takes work. I’ve learned to write all my own letters of medical necessity, do all my own research, submit all of my own claims forms, appeals forms, etc. It’s exhausting, but necessary if are going to be successful in getting the right equipment or service you need in your home for your medical condition. You have to be your own advocate in your own life. Plain and simple. You can ask for help, but you have to take charge in being persistent and determined.
Here’s where the tricky part comes in and a few tips and tricks that may help those in similar medical situations. If you are successful in achieving an approval from your health insurance company for a piece of equipment or service, but they are out-of-network you are generally left holding quite a hefty financial bag at the end of the day.
If your health insurance provider approves you in-network, but the provider of what you need is out-of-network you are oftentimes left paying the difference between the in-network and out-of-network rates, which can be many thousands of dollars.
However, if there is not an in-network provider in a reasonable geographical range of your health insurance plan you have the ability to ask your insurance company for something called a:
- Network Gap Exception (https://www.verywellhealth.com/network-gap-exception-what-it-is-how-it-works-1738418)
I won’t get into the nitty-gritty details as you can check out the link, but basically it allows you to get what you need at 100% of the billable amount. So you’re only paying in-network rates meaning that you have to cover your deductible and co-insurance, but then you’re covered.
Be aware though that your health provider isn’t going to be eager to grant you this exception unless you ask for it.
In any event, that’s what I did with the total hospital electrical bed because they were out-of-network. You have to be very careful to read the fine print whenever insurance approves a piece of equipment or service because there are always ways around shelling more money out-of-pocket, but you just have to be clever about it or know how to ask the right questions.
So, this was a wonderful victory and a necessary one, which I’m already helping others navigate how to get their own total hospital electrical beds.
Now, onto my crushing defeat of the VitaGlide …
VitaGlide
I have been rejected over 6 times by Blue Cross and Blue Shield for an adaptive piece of exercise equipment because I was rejected under the umbrella of a non-covered benefit. This is really tricky, an uphill battle, and one I’m likely to lose in the long run to be frank until insurance policy language changes.
I started this mission back in July 2020 and was rejected to the highest level by Blue Cross and Blue Shield, and even the Department of Insurance would not take my case because any item that is not covered under my policy plan, whether my medical professionals or I really deem it to be medically necessary, pretty much leaves you dead in the water.
I had to wait 4 months to re-apply for the VitaGlide full well knowing I would likely be rejected again. I decided to do it anyway. I spent three straight months writing a 30 page paper backed up by 130 peer-reviewed journal articles stating the medical necessity of exercise for individuals with spinal cord injury. I made the case that it has been proven time and time again that a sedentary lifestyle leads to numerous expensive medical complications such as diabetes, obesity, cardiometabolic diseases, pressure sores, loss of muscle mass, etc. I mean this paper is amazing and I even had it reviewed by doctors, lawyers, exercise scientists, advocates, and physical therapists.
I know how to write and this was one of my best pieces of work. I further made the case that in June of 2020 Blue Cross and Blue Shield, after only going to the media, overturned a denial for a non-covered benefit for my seat elevator for my wheelchair. I tried to make the case why would they not allow me the same opportunity to prove my case if they had once made an exception for approving a non-covered benefit before?
In a previous article I wrote for Push Living I posted the letter of medical necessity for the VitaGlide, which you can read all about:https://pushliving.com/never-never-never-give-up-even-when-health-insurance-denies-you/
Last week the dreaded big envelope arrived in the mail …
REJECTION – AGAIN!
I don’t know how many more rejections I can take for the VitaGlide, but when you are rejected for a non-covered item based on your insurance plan you only have the ability to go through one level of appeals before a final determination is made. This rejection was my last one and I have no more appeals rights. I then made quick work of submitting my case to the Department of Insurance who turned around and rejected me in 24 hours flat saying that they could not perform an external review because Blue Cross and Blue Shield did not reject me on the basis of “Lack of Medical Necessity.”
What Now?
This is such a loaded question. I don’t really know. I reached out to 15 news organizations over the last 48 hours and the responses I received from several were that they are busy with the race issue in America, Covid-19, and more pressing issues. I get that and I was probably lucky to have the news pick up my story last June before things started to get crazy around the world. However, I’m still waiting to hear back from more media outlets to see if they will pick up my story.
I have also reached out to a law firm to see what rights I might have to litigate for a non-covered benefit item under my insurance policy. Honestly, I’m not very hopeful in this particular moment, which enrages me.
Under my insurance policy it states that non-covered items such as seat lifts, chairlifts, physical exercise equipment, etc. are simply not covered – yet they covered a non-covered item just last year. Their argument was that the non-covered seat elevator was in my network. They’re using nitty-gritty language against me and not looking at the whole picture.
A Backwards System
Let’s take that phrase“physical exercise equipment” for a moment. I get it, someone applying to get a treadmill in their home from their insurance company who have the ability to walk outside should certainly be rejected. There is no differentiation in these insurance policies for what physical exercise equipment means to different segments of the population, such as the disability population.
I’m not asking for the moon and stars for God’s sake, I’m asking for a $3,500 piece of equipment to keep me healthy from a preventative healthcare standpoint to reduce the likely risk of diabetes, cardiometabolic diseases, keeping my strength up so I can transfer safely without breaking my bones, etc. The irony in all this is that I am constantly receiving emails from Blue Cross and Blue Shield telling me how much they supposedly care about my physical and mental well-being.
There need to be exceptions in each insurance policy for people with severe disabilities, who make up nearly 1/3 of the United States population, to have avenues to appeal on a case-by-case basis. I’m not asking to get something for free as I’m willing to work for it and have worked for over a year straight on it.
It’s ultimately going to come down to working with elected officials to have these insurance policies changed. It only takes a sentence in an insurance policy to make that difference, but naturally these companies don’t have incentive to want to pay out for anything.
The rationale is completely beyond my comprehension because allowing me to sit in my wheelchair all day with no physical exercise because a standard gym does not have adaptive exercise equipment — all the while waiting for me to develop diabetes, pressure sores, further atrophy of my muscles, among so many others is far more expensive for an insurance company to pay out when I land up in the emergency room or they are paying for daily test strips for diabetes I’m likely to develop from simply living a sedentary lifestyle.
WE NEED SYSTEMATIC CHANGE – however, we need our elected officials to care. Most of them are so busy fighting amongst themselves for this or that, don’t understand the needs of the disability community, or simply have their agendas too full to even think about us. For those that do care they’re up against fighting multinational corporations and institutions like Medicare, who make you jump through hoops for years on end.
If Medicare approves adapted physical exercise equipment private insurance companies usually follow suit. However, many of us know the constant red tape we are faced with trying to negotiate with an institution like Medicare. For example, I have friends on Medicare who can only get so many catheters a month. Do you know what this means? They are basically telling you how many times a day or month you are allowed to pee. If that sentence doesn’t enrage you I’m not quite sure what will.
Living a life with paralysis or any other type of disability is challenging enough as we are just trying to become more independent, improve our quality of life, and contribute to society. We are simultaneously having institutions such as Medicare tell us how many times we can go to the bathroom per month. This makes the idea of trying to keep us physically fit an afterthought in many of these officials’ minds.
There are so many incredible organizations and institutions I am working with to try and change the system, but there are just so many issues to tackle. So many. It will make your head spin. How do we prioritize?
It comes down to the simple fact that we do not live in a society, from a health insurance standpoint, that is trying to promote preventative healthcare vs. treat the illness as it comes up.
I honestly don’t have an answer for you with how I’m going to proceed on the VitaGlide right now, but I’m not going to stop trying. This may take me a decade of my life, but having specialized physical exercise equipment for the disability community is an issue so near and dear to my heart that I will never stop. Never!
As Winston Churchill famously said “The definition of success is moving from failure to failure without lack of enthusiasm.” I live by this quote – I will die by this quote. I may have failed over and over again this past year, but I am not going to lose my tenacious determination to keep pushing forward.