I spent some time diving into how expensive it is to be paralyzed, but I wanted to take some time to dissect some of the true costs in the private health insurance market. 

Many with significant mobility impairments are in the boat of being tied to government benefits such as Medicare and Medicaid.  Unfortunately, I do not fall into this category of qualifying for such government aid as I make too much money in my life.  At first glance, many might think this is advantageous because I do make a decent living, but when you break down life costs in addition to health insurance costs when I am paying for every single dollar out-of-pocket – life does not appear as quite as rosy.

This puts many with disabilities in quite a conundrum.  Do you take the leap in life to work a full-time job and give up your government benefits when on any given day a medical emergency can arise or life with a disability can simply take you by surprise to simply knock you out of the game?  

This is a tricky question because many I know with disabilities simply cannot work a full-time job due to caregiving issues or other medical complications.  The fear of not being able to cover your daily living expenses in addition to all the added costs associated with a disability has a tendency to lead many to stay on their government benefits.  Unfortunately, this results in losing further financial independence and quality of life.

There are no two ways about it, both situations, whether you are paying everything out-of-pocket with a full-time job or are stuck within the governmental benefit system results in increased anxiety, constant worrying about physical daily survival, and puts all of us in between a rock and a hard spot most days of the week.

In my particular situation, I have made the decision to work full-time and pay for my life.  It’s not easy especially when I am consistently dealing with secondary complications such as osteoporosis, severe nerve pain 24/7, and constant fatigue.  However, this is a decision I have consciously decided to make and still struggle with it every day.

Breaking Down Private Health insurance Costs

Now, let’s break down health insurance for a moment.  Since I do not qualify for any government benefits I am forced to take the road of paying for private health insurance.  It gets a little bit tricky and more nuanced than that as well.  I have to stay within the health insurance marketplace plans provided under Obama care because they do not discriminate against pre-existing conditions.

When I moved back from China in 2015 and Obama care was in the full swing of “working” better than it does six years later, I was moderately happy with the amount I had to pay for health insurance.  My complete health insurance costs, not including things that they don’t cover, which is ridiculous in my opinion, such as gloves, underpads, specialized suppositories for the bowel program, etc. – I was paying a total of around $6,000 a year.

Fast-forward to 2022 and I am now paying about $14,000 out-of-pocket each year between my monthly premiums and maximum out-of-pocket costs.  Each year on the health insurance marketplace, each state is slightly different, health insurance companies have been shrinking their networks with respect to the specialized doctors I need to see, increasing my monthly premiums, and increasing my maximum out-of-pocket costs.  It’s outrageous and financially terrifying.

If you look at how much I make each year many might think “wow, what are you complaining about you make a lot of money.”  However, if you break down my expenses by line item I’m nearly in the same category as many in government benefits because at the end of the day I barely have enough from a quality-of-life perspective because I am working nearly 60 to 65 hours a week as a C6 quadriplegic.  I’m exhausted all the time even though I love what I do.

Let’s break down the key components of any private health insurance plan so that you get a better idea of what many of us are facing in the private health insurance world.  Please keep in mind this does not include paying out-of-pocket for private caregivers 365 days a year or for items that my health insurance company does not cover:

 2015 BCBS plan2022 BCBS current plan2023 BCBS upcoming planNotes
Monthly Premium$400/mo = $4,800/yr$463/mo = $5,556/yr$490/mo = $5,880/yrSet monthly cost
Yearly Deductible$500$2500$2000What you first have to pay before your benefits kick in.  Then co-insurance kicks in usually between 20% to 40% per visit.
Maximum out-of-pocket per year$1,500$8,700$9,100The most you can pay out-of-pocket per year.  100% of costs are covered after as long as they are in network

*I am leaving out a handful of nitty-gritty costs and just showing you a basic overview in order to simplify the problem.

* All these costs are only applicable if you stay within your network of allowable providers as determined by your plan.

This is an extremely simplified version of the fine print of a health insurance plan, but there are a few things I need to lay out to explain what they mean:

Monthly Premiums

  • This is a set amount you need to pay each month regardless of any other costs.
  • (i.e. this is a fixed amount each month you must pay to keep your health insurance plan active)


  • You must pay your yearly deductible, not including your premium, before any of your benefits will kick in.
  • Once your benefits kick in and depending on your plan, you then pay a certain percentage, such as 20% or 30%, of a specific service until your meet your maximum out-of-pocket.  This is called co-insurance.
  • (i.e. Once you meet your deductible amount of say $500.  Your benefits kick in.  If you go to the doctor and they charge her health insurance company $100 as an example, you may be responsible for 20% of this bill = $20.  Your health insurance company will then pay $80.  Depending on the number of surgical procedures or medical procedures you have a year, you continue to pay 20% (in network I might add – as for out-of-network benefits, most insurance companies now don’t cover out-of-network for any reason within the health insurance marketplace), until you reach your maximum out-of-pocket.)

Maximum Out-of-pocket

  • This is what gets tricky for folks.  After you pay your deductible and you pay certain percentage of each bill for each doctor’s visit or medical procedure (your co-insurance), once you hit your maximum out-of-pocket within your In-Network benefits – your health insurance company will pay 100% of your costs in-network for the remainder of the year.
  • (i.e. as many of us with disabilities have multiple procedures over the course of the year, often times, we reach our out-of-pocket maximums no matter what.  So, in the year of 2022 I had a series of medical procedures and even after paying a certain percentage I hit $8700.  Health insurance will now cover 100% of my costs (not including the monthly premium) for the remainder of 2022 until my new plan sets and as long as I work within their network of doctors.

What gets really tricky here with the disability community and private health insurance as opposed to the able-bodied population, who are relatively healthy, is this:

  • A majority of folks, after paying their monthly premium and deductible, usually don’t hit their maximum out-of-pocket costs for the year.
  • For example, a relatively healthy person may have a handful of doctor visits a year and only spend up to several thousand dollars per year.  So, after an able-bodied person with the health plan of 2022 meet the $2500 deductible, they may be only paying 20% co-insurance on a number of services for the rest of the year.  These services may add up to only $2000 = $400 coinsurance at a rate of 20%.
    • This doesn’t seem like a tremendous amount of money at first, but with a disability, many of our medical procedures can be in the tens of thousands of dollars.  If you do the math, we meet our out-of-pocket maximums quite quickly.

In Summation …

Private health insurance is really expensive.  Over the years, most health plans have reduced the number of doctors you are able to see, increased costs, and forced many of us to give up specialized physicians that we need to survive many of our secondary medical complications.

It’s really all about perspective and choices.  On one hand, if you’re fortunate enough to make enough money and work full time you can pay for your life, but at a very high cost leaving you practically broke at the end of each year.  On the other hand, you may be afforded government benefits, but cannot make more than $1,100 roughly affecting your quality of life.  Both situations are no way to live for either party.

We have a serious problem with respect to health equity within our United States health insurance system today and pay more per capita than any other country in the world.  The system is broken, many of us with disabilities are suffering the consequences, and there are thousands of folks trying to do their part to balance these inequities.

There is no clear-cut solution and I am not proposing one at this time, but just wanted to shed light on to some of the realities many of us have to face on a daily basis.

I wrote about this on one of my social media post last week with respect to thinking critically the question “is our health insurance system trying to kill us?”  The sweet spot for most health insurance companies is for those who have some medical complications and need regular cholesterol medicines or high blood pressure medicines, etc.  For those of us who have serious debilitating medical challenges that require very expensive solutions, we are not in the desired category for many health insurance companies to make money.  It’s unfortunate most of this comes down to bottom line profits, but in the private industry those are some of the realities we have to deal with.

On that note, I’m off to go work with legislators on trying to reclassify adaptive exercise equipment as Durable Medical Equipment to reduce many secondary complications and focus on preventative healthcare.  The irony is most health insurance companies don’t differentiate between a treadmill or a specialized piece of equipment for wheelchair users – such an antiquated and outdated policy that needs attention NOW!

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