The first time in a long time I’m not even sure where to start with this article. When in doubt, I always go back to the beginning –
My life is presently full of so many incredibly, albeit exhausting, activities, projects, professional endeavors, and non-profit work all centered around disability inclusion. Many of the partnerships I have formed, friendships I have made, boards I sit on, and consulting projects I engage in came to be because of a singular mission I was on years ago — Health Insurance Denials!
Who I have grown into as an advocate today blossomed from the medical necessity of me needing to navigate the health insurance appeals process from constant denials I was receiving from Blue Cross and Blue Shield. I had no idea at the time that learning to navigate the health insurance appeals system would eventually lead to the amazing career path I am headed down as we speak.
I also had no idea that singular work I was focused on for so many years with health insurance would offer me the opportunity to compete in Ms. Wheelchair North Carolina and then be graciously crowned as Titleholder for 2022. I am now set to compete for Ms. Wheelchair America this coming August. Much of my work now doesn’t specifically center around health insurance per se with many of my consulting projects, but that’s how my advocacy life in the disability community began.
Fast forward to 2020. I’ve successively figured out how to navigate different denials for pieces of durable medical equipment that are medically necessary for my daily survival including a seat elevator, specialized shower chair, specialized mattress, total hospital electrical bed, and a few more items. These pieces of equipment make my daily life possible and I spend a great deal of time teaching others how to advocate for these pieces of equipment. I am also presently in the middle of creating a “Patient to Patient” guide to navigating the health insurance appeals system in addition to working with legislators on policy change.
If you are denied a piece of equipment or service or even prescription and your insurance company denies you with the rationale that it is “not medically necessary,” you have so many more avenues to appeal your case. Even if your insurance company denies you a final time you can go above their head, with private insurance, to the Department of Insurance in your state to have this decision overturned. It is called an external review.
Fast forward to present day — if you are denied any piece of equipment or service and your health providers rationale is a particular service or equipment is a “non-covered benefit,” then you are pretty much up a creek without a paddle. Why? Well, in short, this item is non-covered under your policy. There’s nothing you can do and the Department of Insurance cannot help you either.
This brings me to what I am ferociously and deterministically working on as we speak.
ADAPTIVE EXERCISE EQUIPMENT for WHEELCHAIR USERS
It doesn’t matter whether it is private insurance, Medicare, Medicaid, but any type of exercise equipment whether it be for the able-bodied population or for the disability population is a non-covered benefit item. Plain and simple. One caveat is that certain states and under certain conditions people do have exercise equipped paid for, but this is the exception, not the norm.
I have been trying for years now to have a piece of equipment called the VitaGlide, an adaptive rowing machine specifically designed for wheelchair users, to be approved under my Blue Cross and Blue Shield plan. I’ve lost count how many times I have been rejected due to it being a non-covered benefit item despite writing a 37-page paper backed up with over 130 peer-reviewed journal articles specifically stating why individuals living a sedentary lifestyle, like those in a wheelchair, are going to cost insurance companies far more money in the long run for secondary complications than if they work with us to prevent them through proper exercise. I had this paper reviewed by exercise scientists, lawyers, doctors, and lobbyists.
A huge challenge for the wheelchair population is that we cannot easily access a regular gym because the equipment is not adapted to our needs, specialized gyms for wheelchair users are not usually covered under insurance, and many of us only receive a certain number of physical therapy visits a year. This is outrageous.
MY CRUSADE
When I finally realized I was becoming Einstein’s definition of “insane” by doing the same thing over and over again expecting different results; I decided to change my tactical strategy as any good tactician would in a time of war. Yes, we are in a time of war as it relates to Health Equality vs. Health Equity. We shouldn’t have to fight for right to survive, but we are and must persevere none-the-less. We may be surrounded by technological advancement, but the Art of War and the encompassing strategies are as relevant today as they were thousands of years ago.
I met personally with the North Carolina Health Commissioner, Mike Causey, to plead my case on figuring out how to help me work with health insurance companies to have adaptive exercise equipment for wheelchair users paid for.
After months of back and forth I finally was granted an audience with the Senior Medical Director of Clinical Operations and the Lead Medical Director for Care Management of Blue Cross Blue Shield North Carolina. I even went back and forth of trying to set up a meeting with NC Blue Cross and Blue Shield CEO, Dr. Sotunde, which seemed to be going well, but then I was stonewalled and told that I could make an additional 30-minute video to be presented to the president, and Chief Medical Officer VP. This is as far as they would allow me to go. I wanted to try and work within the system before trying to play hardball because I believe in the path of least resistance first.
We set up a zoom meeting and I made the following argument (I’ll summarize very briefly):
“I am here today to ask BCBS to consider putting adaptive exercise equipment for non-weightbearing individuals (long-term wheelchair users) through a medical necessity review to determine coverage for this equipment.
BCBS now cover services that were once considered non-covered Benefits such as bariatric surgery. Obesity in and of itself is not the problem, but it’s the comorbidities (diabetes, cardiometabolic diseases, obesity, etc.) that accompany obesity that impacts health and dollars. The service is now covered to cure/prevent these comorbidities.
Immobility in and of itself is not the problem for long-term wheelchair users, but the comorbidities that result are problematic and similar in nature to the comorbidities associated with morbid obesity. (I then go on to state that I wrote a paper with 130 peer-reviewed and established journals to back me up to outline how regular physical exercise for people living a sedentary lifestyle, resulting in deconditioning, is medically necessary to reduce cardiometabolic diseases and related secondary complications.)
Coverage determinations for this equipment is made solely and completely on the presumption that the requester for a piece of equipment is a weight-bearing individual able to partake in exercise regiments in and outside of the home. Exercise is a cornerstone that can ameliorate many of these aforementioned secondary complications arising from physical deconditioning. Evidence clearly supports a therapeutic role of physical activity after spinal cord injury as an effective countermeasure to these risks.
In conclusion, profound immobility following neurologic injury and disability is unique and a specialized situation requiring specialized solutions on the part of the patient and insurance companies working together, and should be evaluated on a case-by-case basis. Reasonable modification to noncovered items is good healthcare.”
You get the gist. I was not asking for the moon and stars, but consideration to first work inside the Blue Cross and Blue Shield system to maybe even create some kind of pilot program to show that Blue Cross and Blue Shield would actually be saving money for long-term wheelchair users if they would just give us the chance to prove the medical necessity. It’s far more expensive for these insurance companies to pay for a year in bed from a pressure sore, personal experience here, than it would be to provide a several thousand-dollar piece of adaptive exercise equipment to keep us fit and healthy, improve our Activities of Daily Living, quality of life, and the list goes on.
I finally mentioned in my concluding remarks that Blue Cross and Blue Shield came out with an initiative in 2020 called Encouraging Whole Person Care with a piece of this initiative focusing on addressing Type 2 Diabetes costing an annual estimated $10.9 billion a year alone. The incidence of diabetes for long-term wheelchair users is extremely high. They did not obviously bite on this argument either.
Blue Cross and Blue Shield talks about preventative healthcare, but they really don’t care. I mean they really don’t especially for such a small segment of the population where it would probably be cheaper if we were dead than alive to be frank with you.
In any event, yesterday I finally received a certified letter in the mail from the BCBS NC VP Chief Medical Officer. I have attached the letter in a PDF that you can click on below, but the essence of it was this is a non-covered benefit item, we do care about maintaining the highest standards around diversity, equity, and inclusion for all our members, yada yada yada, but exercise equipment cannot be considered durable medical equipment, yada yada yada.
Essentially, they told me to piss off. It was an eloquently written letter that indicated to me I’m going to need to take a different direction.
WHAT’S NEXT?
Fortunately, I am not the type of woman to rest on my laurels or be naïve enough to think that this mega giant of a health insurance company was really going to listen to me. I like to believe I’m grounded in reality, not fantasy 😉
So, I have been working with my state legislators on introducing legislation on this very issue, which is coming along nicely.
However, I’m also not naïve enough to believe that this legislation will pass on the first go. That’s okay. I’m also working with a lobbyist and going to be working on different angles from a legislation perspective on adaptive exercise equipment being covered over the next year or two.
Make no mistake. This is not going to be a mission that is going to happen overnight. It is going to take years — probably longer. I may personally fail. Honestly, that’s the fact of the matter. However, even as cautiously optimistic as I am, perhaps I ignite a flame in someone else or another group or organization to carry on the torch in the future.
I’m trying to make noise and shed light on HEALTH EQUITY. We technically have Health Equality, but with nearly 1 billion people on the planet suffering from a disability it’s becoming glaringly evident, from a societal perspective, that we each have our own needs. One size does not fit all.
To pave the way for systemic change is a mission that is measured in decades, not years. I’m well aware of this. That’s okay, I’m in this personal mission for the long haul.
I am presently part of a giant coalition as a patient advocate trying to have seat elevators and standing wheelchairs reclassified as medically necessary under Medicare in very simple terms. This coalition, the I.T.EM. Coalition, is made up of hundreds of individuals, organizations, lawyers, doctors, advocates, etc. who have been working on this specific project for years. I mean there are some seriously heavy hitters in this coalition.
How is adaptive exercise equipment likely going to get paid for and deemed medically necessary in the future?
A coalition needs to be built. Presently I am a one-woman show and I do as much as I can on my own, but it’s going to take a massive village to get this accomplished. There are of course higher priorities in the disability community, but every single one of my friends I know are desperate improve their quality of life with simple things like being able to exercise in their home to prevent life-threatening secondary complications.
I will not give up, I will keep going, I’m not afraid of rejection, are you? Will you join my mission?
I will leave you with a beautiful Mother Theresa Quote:
“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”