We should be enraged, inspired to change, and determined to fight as Americans with the state of our healthcare system in this country. The fact that we spend 2 to 3 times more on health insurance in the United States for subpar services as compared to many other countries in the world is outrageous. It speaks to the issue of no regulatory authority in our healthcare system. The government does not regulate healthcare prices resulting in huge price variations in addition to, but certainly not limited to, consistent denials for countless medically necessary services and products for many hard-working Americans.
-I have a Story –
Tens of thousands of others share similar stories. I’ve had enough and it’s time to fight for my survival and for those who cannot do it for themselves. I’m hard-working, pay into our governmental system, and spend $8,000-$13,000 per year out-of-pocket for health insurance only to be denied medically necessary equipment at every turn. I have spent hundreds of hours over the last several years fighting quietly for medical services I need and now it’s time to take the fight public. This is an issue of basic human dignity so that I may live my life with independence and freedom despite being severely physically disabled.
This is a continuing story of my fight for medically necessary equipment and services, which are consistently being denied by my health insurance carrier, Blue Cross and Blue Shield of North Carolina (BCBSNC). I’m being denied a medically necessary equipment despite my doctors, physical therapists, and medical professionals, who know me best, writing medically necessary letters on behalf for equipment I need for my disability as a quadriplegic paralyzed from the chest down.
I approach life with a dark sense of humor, oftentimes the only way I survive my days, but there is no humor in what many of us who are disabled are dealing with on a daily basis.
Blue Cross and Blue Shield Finances
I fall into a unique category where I do not qualify for Medicaid or SSI. I make too much money to qualify for these benefits, but not enough to not enough to be truly independent. I must rely on my own work and family to help me through the ins and outs of daily life.
It’s important to note that I know how lucky I am despite being paralyzed from the chest down because I have the family support, love, community, and the perpetual desire to fight as so many in my situation do not. This is not just a narrative about the bloody battle I am facing, but a story for all those who do not have the ability, time, finances, or support to fight for themselves.
Because I do not qualify for government support I’m left to pay everything on my own, including health insurance. Over the last five years, health insurance has become significantly more challenging to navigate. With ObamaCare, one has to purchase private health insurance through the Healthcare Marketplace in order to not be discriminated against with pre-existing conditions. Many years ago multiple insurance carriers offered many plans through the Marketplace at reasonable rates.
Each year several insurance carriers opted out of the Marketplace offerings. Today in North Carolina, BCBS and a new subpar HMO plan called Amberetter are the only players in town with very limited plan choices, high premiums, high deductibles, and a very high maximum out-of-pocket rates. I do not qualify for any kind of financial credit to help out with my health insurance.
My health insurance premium is about $450 per month.
My deductible for health insurance, which is mandatory to pay before health insurance kicks in, went from $500 in 2015 to $3,000 in 2020.
The maximum out-of-pocket costs that I could pay before health insurance would kick in 100% with in-network providers was $1,500 in 2015 and is now $8,150 in 2020. I shudder at the thought of what 2021 plans will be.
To add insult to injury, my medical providers who are in-network and critical to my care remain at around 40% as compared to 100% in 2015. I’ve had to make some very tough choices this year by cutting out certain doctors who have moved out-of-network for my plan.
To add one more rotten cherry on top of a molding cake – my BCBS plan only offers 60 hours a year of caregiving for someone who is fully dependent on another human being for daily care. I’m not even going to factor in the tens of thousands of dollars I have to pay out-of-pocket for caregivers each year. I’m just fortunate I’m even able to do this.
This leads me to the crux of my insurance financial woes …
Medically Necessary Equipment & Services
Whenever a patient, for any reason, needs a piece of equipment, surgery, or service you have to get pre-approval from your health insurance company by having your doctor send in a letter of medical necessity stating why you might need the said equipment or service.
If the service is standard, an appendectomy, for example, you’re likely to get approved because it will kill you in the very immediate future. This is the key. You basically have to be on your deathbed to get anything approved and streamlined on an expedited basis. Sadly, I personally know people with stories where health insurance companies even fought back even when the patient was on their deathbed.
If you need some equipment or a service that is deemed medically necessary by your doctors or nurses, and it is not immediately life-saving, your chances of being denied on the first round, second round, and even third round are extremely high. BCBS has a deny policy first as most insurance carriers do. Of course, they don’t want to pay out-of-pocket for something that you actually may need unless you fight for it. The amount of money we spend is mind-boggling to me for our right to survive.
Depending on your health insurance plan there are, oftentimes, several levels of internal appeals, which are reviewed by a panel of doctors, nurses, medical coders, and perhaps insurance lawyers to determine if what you need is medically necessary. Even if you send in mountains of paperwork, as I have done countless times, written by your medical professionals stating something is medically necessary – they will likely deny you first.
You have the right, by federal law, to speak with a “HIPAA compliance/Privacy officer” at your insurance company and ask them for the names and credentials of every person accessing your records who made a decision on the denial. By law, you have the right to this information.
Even still, who are these medical professionals who may have no experience in your particular medical situation to determine what is medically necessary for you? Do our own doctors who know us best not carry enough clout with these insurance companies to be competent judges of what’s medically necessary for us?
Who are these people to tell us how independent or not independent we are allowed to be? They are literally affecting our daily lives, survival, and freedom.
My Story
Over the years I have adopted a militaristic strategic approach to battle BCBS’s final denial decisions on medically necessary equipment and services I have needed. At times this has become a full-time job for me and certainly sucked the energy out of my soul on many occasions.
In 2015 I received a power wheelchair from BCBS with all the necessary functions I needed for my wheelchair. A power wheelchair can get pretty fancy and depending on how paralyzed you are certain functions are more critical than others. After five years I was eligible for a new power wheelchair in January of 2020.
I worked with my physical therapist, durable medical supplier, and general practitioner to submit over 60 pages of paperwork stating why my chair with all the bells and whistles is medically necessary; along with a personal letter I wrote the appeals team (https://pushliving.com/the-art-of-health-insurance-appeals-my-battle-for-a-power-wheelchair-seat-lift/) stating why I need the same chair, I received back in 2015.
BCBS denied a key element on my power wheelchair called the seat elevator. The seat elevator allows the chair to be raised vertically. This is critical for many quadriplegics who do not have caregivers 24/7, like myself, to raise the chair up to open the front door, raise up to a level bed in order to transfer safely, raise up to the sink for grooming, a thermostat, the microwave for cooking, the list goes on.
In particular, if you are paralyzed from the chest down and have limited mobility you have to strategically pivot yourself safely into bed without falling out of your chair. The only way to safely do this is to be level with your bed. When you are alone and try to transfer into your bed on an uneven surface you run the risk of ending up on the floor for countless hours, which can lead to death, broken bones, pressure sores, etc.
The elevator feature on a power wheelchair retails between $500-$5,000 depending on the durable medical supplier. How can this feature range so greatly in the price? Well, the lack of regulation of healthcare prices in this country – that’s how.
I just read a New York Times article the other day speaking to the wide range in price of Covid-19 test kits running between $100-$2,400 per test. The same concept applies across many needed health services and equipment in this country. It’s easy to price gouge the disabled when they cannot fight for themselves. If that doesn’t make you angry I’m not sure what will.
It’s hard enough being paralyzed and trying to navigate life when 80% of your body is nonfunctional and dead weight, but to add the constant battle of trying to get the basic equipment that we need? Disgraceful!
I digress from the mission at hand. Several months after submitting all the necessary paperwork to my insurance company I was denied. I then submitted further documentation to the BCBS appeals team only to be denied a final time. They told me I had exhausted my internal appeals rights and the next course of action would be to file an external review with the North Carolina Department of Insurance (NCDOI). Each state has its own Department of Insurance where you can submit external reviews so that they might be able to overturn your insurance company’s decision for what you need.
It’s not an easy process. You have to navigate the paperwork and it’s very common that your medical professionals don’t know how to help guide you through the external review. I had to gather all of the paperwork and notes from my durable medical supplier, general practitioner, and physical therapist to resubmit to the NCDOI. Two weeks ago I underwent this process myself to see if the NCDOI would overturn BCBS’s denial decision.
After I submitted the paperwork they called me and asked me to submit more. I’m determined, so I made quick work of talking to all my medical professionals to see what other information they could offer me in my defense. I even went above and beyond and took pictures of why I need the seat elevator in the first place. With each picture, I wrote several sentences about why the seat elevator was critical for a particular activity in my own house.
Think about it, it’s not like I became less paralyzed in the last five years?
BCBS approved me five years ago, why the hell would they not approve me now?
In any event, I’m now in the process of waiting for the NCDOI to determine my fate for the seat elevator. I am well-versed in navigating the appeals process and external reviews, but how many people really are? Who has the time? Who has the drive and determination when most of us are just trying to get through our days of being alone at home, working with caregivers, and trying to prevent secondary complications in our lives?
Secondary Complications
This battle is not just about a seat elevator. There are dozens of other medically necessary pieces of equipment we need on a daily basis to prevent other complications such as urinary tract infections, bone loss, pressure sores, respiratory issues, etc.
It makes no sense for insurance companies to deny basic equipment such as a shower chair, exercise equipment, standing frames to prevent osteoporosis, seat elevators, underpads, medical gloves, how many catheters we are allowed to use in a month, etc.
Don’t get me started on catheters – when one is paralyzed you don’t have control of your bowel or bladder. Insurance allocates you so many catheters a month. The point I’m getting at is that they are telling you how many times a day you are allowed to pee. Seriously!? I just don’t have words to describe the tornado of feelings I presently have as I write this sentence.
Financially, it also doesn’t make sense for insurance companies to deny these pieces of equipment because if the disabled are healthier it translates into fewer hospital visits, surgeries, months in bed with nurses coming to help us.
Translation: More money in the health insurance company’s pockets if they would just give us what we need. It’s truly a win-win for all.
There are certain states, and this is on a local legislative level, where if a medical professional attests that something is medically necessary insurance companies are obligated to accept the doctor’s recommendations. North Carolina is not one of those states – YET!
National Campaign
I know there are many national organizations on disability rights fighting for these exact issues in Congress. Ultimately change is going to need to come from laws being amended. These things take time of course – along with blood, sweat, tears, anger, determination, drive, and tenacity.
Folks, I’ve arrived. I often wondered how some of the most inspirational people I meet find the inner strength to keep pushing forward and take on the Goliath of health insurance companies. I get it now. I’m there. I’m willing to start at the bottom and dedicate years of my life to the specific cause of working to get those in need what they require to live a life of dignity through independence and access.
I’m now being connected with local disability rights organizations and slowly being invited to work on national campaigns. I’ve also reached out to 15 different national news outlets in the last week. I’m fairly certain, in light of the pandemic and the protests at the moment, I will not hear back from them, but I have on my calendar every month to submit my story to national news organizations for the next year.
On the local level, I did hear back from several new stations. I’ll keep them under wraps for now until the program airs, but I was interviewed on camera the other day and have another interview in the next week. Interestingly, the investigative reporter who interviewed me said that often times when she takes on a news story relating to the topic of insurance company denials, they come back and reverse their decision. We’ll see …
Even if BCBS does reverse their appeal before the NCDOI makes their own external decision, while I’ll happily accept the elevator in the wheelchair, this mission has morphed into something much grander. I appreciate most people don’t have the time or ability to fight as I do and nor should they! That is worth repeating – NOR SHOULD THEY!
Listen, I’m just a tiny minnow in a giant ocean. I may get gobbled up by a shark, but I’m not going down until I swim my heart out. At the very least I would hope to give the sharks some kind of indigestion 😉
While many of us fight for change on the national scale, it may be a while. In the meantime, I’ll always continue to fight my battles, but more importantly, I’m willing to help individuals fight their own personal health insurance battles.
At the very least if I can help dozens fight their own battles to get what they need to be approved I will consider this a major win in my life.
We all define success differently and over the years I’ve come to alter my definition of success. A successful life to me means paying it forward at every turn. There are millions of injustices going on in the world every second of every day, but what makes being human unique is the human experience. We must care for each other, fight for each other, and think of others in such a selfish world.
PLEA FOR HELP
The more the merrier! If you want to help, get involved, let’s do it! Reach out to me.
If you have media contacts that might be interested in this kind of story, please let me know. This is a collaborative group effort and I need all the help I can get.
https://pushliving.com/the-art-of-health-insurance-appeals-my-battle-for-a-power-wheelchair-seat-lift/