The healthcare system is too disjointed to use safely. Dangers can include not getting treatment, or getting the wrong treatment, as well as risks to getting some very very expensive, and unneeded products and services, and being required to pay the full cost for these, or even being erroneously or fraudulently charged more money than you'll ever see in your life.
I have been a passive observer of the way greed drives the medical establishment, starting as an outside observer with what passed for medical care for my parents, in the late 1970s when I was a teenager. It became personal about 3 decades ago with a closed head injury. This led, among other things, to being a victim of medical identity theft, which had $1.4 million on my credit report in other people's healthcare for people I did not know, in a state where I have never been. Having this black mark on my credit no doubt cost me some jobs and other opportunities in life, but I'll never know what or to what extent.
This is the reason that the US has the highest priced healthcare, with healthcare costs being the #1 cause of personal bankruptsy. It overtook credit cards as #1 in 2012. All the while, the US has the highest infant and maternal mortality rate, along with the lowest life expectency in the developod world.
The system we have is unusable! Nearly anything would be preferable, including socialized medicine, single payer healthcare, a true capitalist "pay as you go" system, or even completely outlawing healthcare for payment - going back to when "conventional" healthcare was provided by religious orders as charity or herbalism and wound treatment was provided by individuals for barter.
The disjointed nature of the so-called care has been astounding. The only way to get medical care at all is to develop a working knowledge of medicine, medical coding, and one's own insurance coverage. It would be far simpler if insurance were out of the way completely, so one would only have to learn what the medical conditions are, diagnostic criteria, recommended and dis-recommended treatment options are, and forgo the so-called expert – who may have their knowledge from paid seminars and classes brought to them by drug and device manufacturing companies, as well as advertising. Expecting someone to go to medical school and coding school themselves in order to get satisfactory healthcare is absurd.
A few months back, I was diagnosed with diabetes after it having been found during a screening offered at a flu-shot clinic.
No referral to any sort of diabetes educator. Just a pamphlet with a diet consisting of about 10 foods, with glycemic index, and exact times of day when these meals are to be eaten. No prescription for a blood-glucose meter or supplies. Scolding when I told the nurse that I'd bought one on my own. Scolding again from the PA when I didn't bring my meter into the office. It was difficult to get the PA to understand that I want a prescription for the meter so I can have some of the supplies paid for by insurance. I guess they think that glucose strips are provided by the glucose-strip fairy. With the PA it was different. I met some near-insistance that I go to their "preferred" diabetes educator who is 60 miles away from my home, and has the 10 classes at times that interfere with my work schedule. I got what I needed directly from the American Diabetes Association on my own - and paid for it myself.
My A1c test results, indicating my blood sugar over the past 3 months, is close to the targeted range. Then, there was difficulty with the prescription for my medication – or to have enough to get me through an upcoming planned vacation.
There have been plenty of other issues too. 25 years ago, I was in a near-fatal car crash. I was prescribed an absurd set of medications, including blood pressure lowering medication with a blood pressure of 100/60 (they got it down to 62/28), told to walk 2.5 miles each way to a physical therapist so I could “exercise” (at a huge charge) at the physical therapy clinic since I was “inactive”, told to drive 30 miles each way to another clinic several times per week, even though I had no driver's license – hence my walking to physical therapy. I was suspected of having sleep apnea by several of the physicians who treated me then. They just told me, "You should have it looked into." THEY were the ones who could look into it, or refer me to the right people.
Several years after that, after my then-new husband became alarmed at my breath stoppage, he went he went with me to the doctor, who ordered a sleep study. I was delivered a pulse-ox machine – a device which measures the oxygen level in my blood, with instructions to wear it overnight. No other equipment was delivered. The doctor found nothing wrong. I got a bill for $4200 for this “sleep study” in 1994.
I was hospitalized after that. The nurses noticed breathing apneas. The doctor talked to them, and assured them that I'd just had a sleep study, so there was no cause for alarm. There was no followup.
15 years later, my current husband became alarmed the same way. I reassured him that I had a sleep study over the issue, and they hadn't found anything. He went with me to the doctor, and explained his observations. This doctor also referred me for a sleep study. This sleep study was different: It was done in a hospital, with numerous machines, a respiratory therapist right there to hook it up and observe. I talked with the respiratory therapist at that sleep clinic. He had never heard of just a pulse-ox as a study, and couldn't imagine what useful information they could get from that. Well, I had obstructive sleep apnea pretty severely. The strongly suggested being treated by the only medical supply company in the area that offered such devices, beginning immediately, as a possible outcome from sleep apnea is to die in one's sleep.
I am covered by Tricare. The company would not allow me a Cpap machine or supplies until it was pre-authorized by the insurance. Tricare does not give preauthorizations for medical equipment ordered by a physician. The company kept insisting that they couldn't do it without a preauthorization. The doctor kept telling me that I needed to get treatment. He was right: What was the purpose of the testing and diagnosis if treatment is not going to be followed regardless of the outcome?
So, after over a month of this - getting testing, a diagnosis, and no treatment being available, I bought a CPAP machine and all supplies through a medical company on the Internet - complete with a respiratory therapist on staff who could and would assist with fitting of attachments, adjustments, and its care and use.
They also had provider numbers and certifications, so their products and services could be covered by insurance – including Medicare and Tricare.
14 months later, this local company called, and yeah, they could accept my Tricare insurance, and wanted to bring out a Cpap machine, mask, and “fit it”. They seemed shocked when I told them that they were far too late – that I'd already dealt with this medical device company in another state. I guess that they considered this “optional” - treatment that I wanted for some reason, but don't really need.
I was hospitalized after that in the same hospital where I had my sleep study. The specialist who did an emergency surgery didn't have the records from my primary care doctor stating I had sleep apnea. The anesthesiologist didn't either. They couldn't seem to figure out that they needed to get them, or have the office help contact the doctor's office, or get release of information requests to get those records. So, I went through surgery, recovery, and several days of hospitalization without treatment for sleep apnea – which, again, I'd been warned that I could die in my sleep without. What sort of communication is this where one doctor cannot get records from another in the same city, or a hospital cannot look at its own records? The whole thing seems pretty disjointed. And costly.
This pales in comparison to the risk of what happened next! I developed MRSA in the surgical site. I had to go back to the same hospital to have it surgically debrided, so that the wound could heal. This time, I insisted on my sleep apnea being considered and treated. I was ordered an isolation room after the surgery. Well, in recovery, I found that it wasn't available. They called around the hospital and found a place for me... in the obstetrics unit. Being too giddy from the anesthesia to object, I went. When I came to, I couldn't believe what they had done! There was some miscommunication between the doctor, the surgical staff, the recovery room nurses, and the obstetrics nurses who permitted it. This is disjointed at its finest! Several nurses and aids on the floor asked me to come out and look at the cute little babies – and when I refused, tried to shame me with “What? You don't like babies? I gather you don't have children.” A night nurse there woke me up and yelled at me that I shouldn't be there. I agreed. This wasn't my idea! This is an outright dangerous example of how disjointed this lack of communication throughout the healthcare industry is.
Back to the sleep apnea and the lack of ordinary treatment for it, it's been a good thing. For about what it would have cost to rent the device for 3 months, I've been using it for 8 years.
I've moved. I have tried to get more testing to ensure that the pressure is still correct, to get a new prescription so as to be able to take the device on an airline. They set up another home sleep study test, with another company in my new location. This is actually an approved test, but it consists of a lot more than just a pulse-ox. HOWEVER, government-based insurance, and some private insurance, will not allow any company that rents or sells equipment to treat sleep disorders from providing the equipment - or even delivering the equipment for a sleep study. Obviously, there is a conflict of interest in helping to diagnose a need, then providing the items needed to treat it.
My new doctor, in a practice associated with a hospital, obviously doesn't know this. They cannot know every insurance company's regulation, but certainly they have other patients covered by Tricare, Medicare, or Medicaid – which all have the same rules. I suggested a sleep study in the hospital if he needed it in order to write a new prescription. They said this was cheaper. Well.. is it? When I'm likely to have thousands of dollars in un-covered medical costs, which I'll have to pay retail rates since it is not covered under any insurance?
The medical device company called the next day. They said that they'd been told that I'd bought a cpap machine over the internet, didn't know how to use it. They wanted directions to my home so they could deliver me a new mask and cpap machine, and help me set it up. WTF? This is not what I need! If I hadn't figured out how to use the machine in 8 years, I would have sent it back long ago! I told them, no, that I needed a sleep study. They said they'd call back to set it up "on Monday". That's been about 10 days ago. I canceled that since I found out that I alone would be responsible for paying for this.
I shudder to think about the full retail price of a cpap mask, plus mileage for someone to drive 120 miles to deliver it, and several hours of that person's time.
Today though, they got it straightened out. They will get me another overnight pulse-ox, they won't charge me a thing for it. That will tell us about the same thing it did over 20 years ago – nothing. But, I'll get an updated prescription for the device... maybe... if I agree to let the local company do it. Or, not. It is my right to have prescriptions filled at the pharmacy of my choice. Of course, if they don't find a problem, there might not be a prescription. Or, a run-around through getting a real sleep study.
One almost gets the idea that treatment for this is recreational. I know how much I love having something over my face at night, and I really love it when the mask gets out of place and blows air into my eyes for several hours. (NOT!) If I were unable to look at what various scientific studies about this are, the opinions of The American Academy of Sleep Medicine, the National Institute of Health, and WebMD, and instead just avoided resistance, I'd get the idea that this is some sort of made-up disease, and treatment for it was optional. I'd be one of the millions who does not comply with their treatment plan.
Medical care is too disjointed under the current system to use. It's their lack of communication with one another. Or, lack of communication with patients and their families. Or lack of communication with insurance companies. Or, if one does use it, one has to be prepared at any time to be required to pay tens of thousands of dollars in unexpected costs.
For people who cannot.... well... there has to be a reason that the US has the lowest life expectancy, the highest infant mortality rate, along with the highest medical costs of any industrialized country. (Source: CIA World Factbook)
I've found out a few times in this what the value of my life is. It's worth less than $4200 1994 dollars. It's worth less than a $300 Cpap machine.