As the 30 minute mark passed while waiting on hold for Blue Cross and Blue Shield my mind started to wander. I opened up an old hard drive of my mother’s with photos spanning back 20 years or so. As I was scrolling through some of the photos I hesitantly stopped to look at the ones from my home before the accident in Cat Island, Bahamas. These photos were of our family Christmas’s when we were sailing, camping, frolicking on the beach, building sand castles, and opening Christmas presents under tropical trees.
At first I was grinning from cheek to cheek remembering such fond memories, but within a blink of an eye I found myself with tears rolling down my face. I quickly snapped back into reality as I was listening to the elevator music while on hold. I was not mourning for a fully functioning body, but rather for the fact that my reality today revolves heavily around a full-time job of merely being paralyzed.
While I do work, this is really a fraction of what I do in my day. Many days are spent on hold for hours on end fighting with insurance companies, figuring out why a new part of my body has developed pain, driving around town to endless doctor’s appointments, handling the anxiety of hoping a caregiver will show up for work, and enduring the grueling process every single morning of having people put their fingers in my body just to go to the bathroom, and so much more – all at 36 years of age. This is not what I had envisioned my life to be no matter how much I make light of the situation I am in.
Today, however, my tears grew to rage as I finally got a human being on the phone from Blue Cross and Blue Shield. The fact that I have to fight for every detail to try and get covered by my health insurance is borderline criminal. Is it not enough to have to deal with the injury alone? I know I am not alone in this fight as so many of my other friends with spinal cord injuries are in a constant never ending war with bureaucracy trying to survive.
The battle I was fighting today was one of in-network providers. I need to give you little context as to how healthcare has changed over the last several years. While I understand Obama Care has many faults, several years ago the system was much more amenable to those in need than it is today. Frankly none of the systems we have work for healthcare today, but things have gotten MUCH worse over the last few years.
When I moved back from China in 2015, Obama Care was in full swing. Obama Care means different things for different people, but for someone like me with a spinal cord injury it was pretty amazing. One incredible aspect of Obama Care is the fact that insurance companies are not allowed to ask about pre-existing conditions. Naturally, this was extremely useful for me.
In 2015 there were multiple health insurance providers who participated in the program. Today, in North Carolina, it is down to two. Many of the health insurance companies have opted out of participating, which means that they can now discriminate against individuals. I don’t qualify for Medicare or Medicaid, so I’m in a very narrow window of people with spinal cord injury left to pay for health insurance out-of-pocket being self-employed. I’m not even going to touch Medicare or Medicaid as this is not in my wheelhouse of knowledge. I understand Medicare and Medicaid has also gotten exponentially harder for those with spinal cord injuries, but for today I’m going to approach this article from the point of view as an individual who has to pay out-of-pocket for healthcare.
Several years ago I had quite a high deductible around $500 a month, my maximum out-of-pocket was $1,500 per year. This meant that I would spend no more than $7,500 per year on health insurance and then Blue Cross and Blue Shield would cover 100% co-insurance. Don’t get me wrong this is still extremely high, but pretty much every provider in North Carolina and other states were in network. I could go to any hospital I wanted and the process for getting approved for medical procedures was far easier.
Because my income was just above the level of what the government considered too high, I do not receive any tax credits for health insurance as many did and still do. Therefore, I had to pay the full $500 a month as opposed to someone who made minimum wage who might only pay $10 a month, for example.
Fast-forward to November 2019 – this is when enrollment for the Healthcare Marketplace for the Obama Care plans come into play. Not only did the plans diminish down to two or three plans provided by 2 health insurance companies, but the plans spiraled down to absurdity with respect to the doctors offered in network. 60% of my doctors in 2020 are no longer in network with my Blue Cross and Blue Shield plan. I see a lot of doctors for many different reasons. The previous plans I used were also PPO’s. (See diagram below)
For 2020 none of the health insurance plans offered PPOs, which significantly limits coverage of in network doctors. This year there were two plans. There was an HMO, which basically tells you which doctors you are allowed to go to, and being in my situation I need to see very specific specialist doctors – most of whom are not covered. The other plan offered by Blue Cross is something called a POS. I was unfamiliar with what this meant and learned this stands for Point of Service Plans. Essentially it is like an HMO, but if you go out of network they will cover some costs after you pay a whopping $20,000 out-of-pocket. So, a POS is an HMO with fancy wrapping so to speak.
I thought to myself this is absolutely ridiculous and so I went on a mission to call other health insurance companies that were not in the healthcare marketplace. I called Humana, United healthcare, and Cigna. At first they told me they absolutely do offer health insurance plans and I was elated. As they proceeded to ask me a long list of questions they then informed me that not only would they not cover me, but the plan would be astronomical in price. I was really confused because I thought it was a law that health insurance companies were not allowed to ask about previous medical conditions anymore. I came to painstakingly learn that this only applied if a health insurance company was participating in the healthcare marketplace program.
What did this mean for me? For someone who didn’t qualify for Medicare or Medicaid and needed health insurance? Well, it meant I was boxed into a corner and was going to have to choose one of the two plans offered on the healthcare marketplace under the old Obama Care. I was going to have to relinquish control of the little power I had in my health care decisions. Now, in January 2020 I am scrambling trying to find certain doctors with specialties in the areas I need them that are in network. I’ve already done a substantial amount of research on some new doctors and they just don’t hold up to the ones I was seeing last year who I’d also built a relationship with, and who really understood my situation.
I’m confined to using one hospital system and several practitioners. Honestly, as I write this I have no idea what I’m going do right now. I just thought it poignant to point out that something needs to be done. I’m very much considering diving into the political world and advocacy of the disabled with health insurance. I’m not sure how to get started, but I realize something has to be done. How do we change a system that is broken at its core?
I now have to pay an out-of-pocket of nearly $14,000 a year for health insurance. Many could not even swing this, but I am struggling to figure out how to make the rest of life work just so I can afford health insurance in 2020.
A Deadly Situation
Several years ago, the healthcare system was still broken, but was slightly more advantageous in my situation. However, here is the scary tale of what I’ve encountered that countless others I’ve spoken to have dealt with as well.
I was injured in 2010 and dealt with small niggling pressure sores on my tailbone area for years on end. Finally, in 2015 the pressure sore opened up so severely over my tailbone that I had a gaping 4 cm hold down to my bone. Unfortunately, for those with spinal cord injury this is all too common of the story. You are literally confined to your bed for months or years on end depending on the severity of your situation.
For me, I was in bed nearly a full year before emerging from four white walls. The deadly part of the story is that when I went to see four different wound doctors, they told me that I first needed to get something called a wound vacuum (https://en.wikipedia.org/wiki/Negative-pressure_wound_therapy) to try and heal the pressure sore. What I didn’t realize at the time was that this was just medical protocol because a health insurance company would not approve a more involved and useful surgery, called flap surgery, to close up the wound surgically until the wound vacuum had failed for at least three months.
This may not mean much to those who have not experienced a pressure sore, however, if you are paralyzed you have significantly less circulation in the lower extremities of your body, the chances of a wound vacuum healing a bony prominence is extremely low. This means that you are stuck in bed with a wound nurse coming and changing this wound vacuum several times a week while turning in bed for months on end. The few functioning muscles you have left begin to atrophy, because you have to rotate in bed, and you run the risk of developing pressure sores on other areas of your body. Your mental state deteriorates, depression sets in, anxiety goes through the roof, and all hope flutters out the window as you wait for the doctor’s orders and insurance companies to tell you when they think it is appropriate for you to have surgery.
I desperately pleaded with the insurance company to make an exception with my case explaining why the wound vacuum would set me back and not help me. I was rejected at every turn.
This is borderline criminal to the highest degree. I wasted four months of my life in bed with this pointless wound vacuum in pain and agony, crying all the time, and wishing for my life to either end or change. When I was finally approved for the surgery months later, it absolutely saved my life, but only because my mother was there to ensure my success in healing from 400 stitches in my butt, and 200 staples. If you don’t have a loved one or caregiver to help you get through this procedure, the chances of the surgery failing are also very high.
Why? Because insurance companies will not provide regular caregivers to come and take care of you. Unless you are a vent dependent quad and literally have no mobility from the neck down, it is virtually impossible to get a caregiver paid for by insurance, Medicare, or Medicaid for more than a few hours a day. How is this legal and humane in a first world country? If you live in a third world country, I appreciate and understand that these problems may seem quite petty because we do receive some healthcare, but if we don’t keep pushing the boundaries of what is acceptable or not, nothing will ever change.
As a C6 quadriplegic I am paralyzed from the chest down with limited arm function and no hand function. There are a few exceptional C6 quadriplegics I know who have somehow found a way to take care of themselves, but I am not one of them for a number of reasons, including multiple shoulder injuries. I need round-the-clock care, and insurance won’t pay for it. I have tried everything, but they simply won’t.
So, you’re stuck in bed for months waiting for a surgery that may actually help you, but it’s like trying to crawl up Mount Everest on your belly only to fall right back down the mountain because you have no help.
What has become of our healthcare system? How can we change it? Advocacy of course, but it involves all of us banding together as one united front. The challenge with this wonderful dream is that many of us are just clawing our way through life trying to survive the daily challenges presented to us. If we don’t have family, friends, or caregivers to help us go advocate in Washington to change the system, how are we going to do it?
There are so many worthy causes out there, but trying to change an institution can be disheartening when we only have one life to live and we are trying so desperately to make the most of the time we have left.
A conundrum to say the least!