The Health Care Disease

For some time I have wanted to share my difficult and poisonous journey with America’s Health system. (It’s a long one.)

I first began paying for health insurance at the age of 23. I was still on my parents’ health plan but while travelling through India I ran out of money and they loaned me enough to buy a plane ticket home. Instead of paying it back, they suggested I start buying my own health insurance. I found an insurance agent, filled out a form, and got a plan for $100/month with a $5,000 deductible. I could live with that.

This plan worked well for me for a few years. I watched as Obamacare (the Affordable Care Act) passed and cheered for friends of mine who could suddenly receive health care for the first time at an affordable price. When we got pregnant with Summer, our plan worked great for us. Everyone was in-network, bills were paid, and I had not a single worry. But in 2014, I received letters from our insurance companies telling us that our plans were no longer available on the individual market.

For the first time (of many), I started my search for a new plan. This time I had to go through the marketplace. Plans were slightly more expensive but nothing crazy. Summer and I joined Colorado Health Op – a new non-profit insurance that kept cost low. We used the insurance twice for preventative appointments, but when we really needed it we couldn’t use it. We were in Florida for a few months and Summer started vomiting. We visited an urgent care facility and paid for it out of pocket. It didn’t matter too much since we weren’t even close to fulfilling our deductible for the year so would’ve had to pay for it regardless of where we were. Aside from a few immunizations and preventative appointments, we steered clear of the doctor.

But then we got another letter. The non-profit agency had trouble adhering to Obamacare standards and couldn’t compete in the overpriced health market. At this point I was pregnant again. I didn’t panic though because I knew I couldn’t be denied health care from a pre-existing condition (i.e. pregnancy). This time, Bruce’s insurance dropped him as well. Bruce had the same plan for over 10 years. Even though he was “grandfathered” in, the company was somehow able to drop all plans in Florida.

So I went back to the health marketplace (this time in Florida). I was shocked at the prices. For our family of three the monthly premiums cost us over $1,000. Our incomes fluctuate from year to year so we had no idea if we were going to qualify for a subsidy. The individual deductible was $4200 and the individual out-of-pocket maximum was $6500. The family out-of-pocket maximum was $13,000. I signed up and crossed my fingers.

If you haven’t had to take a course on insurance agency lingo like I have, you may be lost. The words deductible, premium, pre-existing condition, in-network, out-of-pocket maximum, primary care physician, referral, co-insurance, co-pay, and out-of-network provider may seem foreign to you. Pay attention: these vocabulary words are important and are useful for insurance agencies to deny coverage or at least trick you into paying more.

When the time came to deliver the baby, all was well. Arlo was born in March. And while we received less than satisfactory medical care, we all emerged mostly healthy. Although here is an important distinction. In the American Health Care system, the insurance company is the client. The doctor is the employee. And the patient is just a by-product. All of the negotiation happens between the hospital and the insurance companies. And sure, the nurses are friendly, and perhaps the doctor kind of knows what she’s doing. But there is no monetary incentive for that doctor or hospital or nurse to do a good job. Sure, I could write a negative review, but in isolated communities like key west, patients have no bargaining tools whatsoever.

At the end of my 5 days in the hospital, I had received a terrible epidural, my neck got really messed up, and the showers had no hot water (it had been that way for weeks). Try pushing a human out of your body and then not being offered a hot shower. Instead of treating my neck pain with a chiropractor or massage, they saddled me with a bunch of pain pills. I had a newborn baby and I couldn’t move my head in any direction and the pain pills were making me dizzy and delusional.

So far, this is not the insurance’s fault. But here’s where it gets good. The bill from the hospital came a few weeks later. My bill, as expected, was the entire amount of my out-of-pocket costs: $6,500. Arlo received a bill for $3,500. Even though the baby traditionally is filed under the mother’s account, I was discharged before Arlo because he needed a few extra rounds of antibiotics. The entire stay in the hospital would have cost us almost $49,000 (according to the bill). Let me reiterate that: I had a natural child birth with almost no complications (a few extra rounds of antibiotics and a couple of blood tests) and the hospital charged almost 50K. I know the insurance company probably has a negotiated price with the hospital, but goodness. Read this article for more information about how the U.S. prices for child birth are astronomical:

And it’s not just that doctors and hospitals are charging more, but Americans are more prone to visit the doctor during pregnancy. In France, for a normal and healthy delivery, a pregnant mother will visit her doctor five times before giving birth. In the U.S. that’s eleven. My doctor ordered an ultrasound for me at 34 weeks (even though I had 2 prior ultrasounds) to make sure the baby was in the right position. A midwife-friend who had been delivering babies for 30 years told me, “If I can’t tell the position of the baby just by feeling the mother’s belly then someone should take away my license.”

After Arlo was born I had to call the insurance company and add him to our plan. I was directed again to the health marketplace, but I couldn’t just add Arlo to the plan, I had to sign our entire family up for health insurance again. That means answering questions, providing Social Security numbers, reading and selecting a plan. It takes at least an hour. Our new premiums as a family of four was $1235.00. Everything was fine until two months later, I received a bill from our pediatrician that said Arlo’s 1-month check up was denied payment.

So I got on the phone with the insurance company again. “You haven’t paid your premiums,” the lady told me over the phone.

“I signed up for autodraft,” I told her.

“Oh, well you need to re-enroll for autodraft when you have a life-change,” she informed me. So basically, everything in my account was the same – username, password, bank info – but I didn’t click the autodraft button again. Forgive me, but I had a newborn (and a toddler). And for some reason, even though my insurance agency sends me plenty of statements now, they were suspiciously quiet during this period of non-payment.

So, not to worry, I just paid three months at once (ouch: $3,600). Later, when I kept receiving denied claims, I learned that there was a weird balance of $120.00 that didn’t transfer in the change-over and my claims continued to be denied. So every time we got a bill for non-payment, I had to call the doctors office (or lab or hospital) and ask them to refile the claims. And unfortunately, we were sick a lot this summer. I got mastitis, Summer got a sore throat and could barely eat or drink, Bruce got a bad cough, and then there was Arlo…

When babies are born in the U.S. they receive a genetic blood screening. Arlo’s came back abnormal for galactosemia – a very rare genetic disorder where the infant cannot process galactose, which is a type of enzyme found in milks (and breastmilk). We knew Arlo didn’t have it because babies with galactosemia have trouble from the beginning. They vomit, they have jaundice, they don’t gain weight, etc. At two weeks old, Arlo was a plump ten pounds and breastfeeding like a champ. But, according the doctor, we needed to retake the galactosemia test to “rule it out.”

So we went back to the hospital and got another heel prick. That test also came back abnormal. So when Arlo was one month we had to get his blood drawn. If you’ve ever watched a lab tech try to find an infant’s blood vessel, it is terrible. There was lot of poking and crying (from me and from Arlo). A few weeks later we got a call. “They accidentally tested for only 1 out of the 3 categories of galactosemia so you need to come back again.”

I was livid, but what could I do? So Arlo and I returned to the hospital again for more torturous needle-poking. The lab tech told me, “I think I got enough blood.” Great.

Turns out she didn’t and now they only had 2/3 out of the three categories. They wanted us to take the test again. Luckily my pediatrician stepped in, chewed a few people out, and told me Arlo was fine. He had a 25% deduction in the enzymes that process galactosemia but it was nothing to worry about. We closed the book on galactosemia, until I got a bill from a lab in central Florida. Apparently, our insurance doesn’t cover pathology testing from that particular lab work. Not that I have any say in where my in-network hospital sends their bloodwork. We are still fighting that one.

Also during that time Arlo came down with a wicked high fever for a two month old. My forehead thermometer read 105, so I panicked and rushed Arlo to the E.R. at midnight. His rectal temperature was 102.9, which for an infant is quite high. They gave him tylenol and poked him with more needles in an unsuccessful attempt to draw blood. They wanted to insert a catheter, do chest xrays, etc etc. By 4 am, Arlo’s temperature was gone and without any answers I checked out of the hospital and saw the pediatrician first thing in the morning.

His fever never returned and all was well. But our hospital bill from that brief visit (where all they really did was check his temperature and give him some tylenol), was close to $2,000. Luckily, by this time, we hit out deductible! Wooohoo! Or so I thought. When I received a bill for a follow up visit to my gynecologist, I was confused. Surely that was a mistake? So, I called my insurance company. Apparently, some bill that I had already paid to the hospital, was lowered for $200 (the reasoning isn’t clear). If I want a refund I need to call the hospital. WTF?! I’m still not sure I understand this one, but like Bruce says, Sometimes the easiest way to solve a problem is to throw money at it.

I also thought it was strange that my co-insurance hadn’t kicked in. If you remember our deductible was $4200, so after the deductible is met, the patient pays 30% and the insurance company pays 70% until the out-of-pocket maximum is met. But according to my insurance company, some visits (like the hospital) don’t qualify for co-insurance. Again, one of those things that I don’t understand.

We spent the summer in Colorado, where Arlo was due for immunizations. Our insurance doesn’t work in Colorado (since it is from Florida) so if I wanted Arlo to stay on schedule, the out-of-pocket cost was $800. Luckily, Colorado has a plan for the “uninsured” to give free immunizations. We still had to pay an $80 administrative fee, but whatever. Summer also got sick while we were there and we had to go to urgent care. The doctor told me it was strep throat (I don’t think it was) and gave us some antibiotics. She recovered, but because the visit was “non-emergency,” the insurance company denied it.

My next insurance bill came from a check up (preventative care) with the pediatrician in Florida. We have a pediatrician that we love and I was excited to take Summer to her 3-year check up to discuss small issues. It turns out that I never designated Summer’s primary care physician. And this insurance plan requires “referrals” meaning you are not allowed to visit another doctor without a referral from your primary care physician. I don’t understand this reasoning, but it is a convenient way for insurance companies to deny coverage.

This summer we also noticed that Arlo’s head was shaped a little irregular. We learned that he had torticollis (a tight neck muscle) which made it easier for him to turn his head in one direction. Because he always slept looking to the right, his soft and malleable head formed a flat spot on that side. Physicians are debating the consequences of a flat head, which is a relatively new phenomenon now that babies sleep on their backs and not their bellies. The real problem is the torticollis (which is cured by stretching and physical therapy), but a severely flattened head can cause other problems like irregularly shaped foreheads, crooked ears, etc. Insurance companies have decided that it is cosmetic (my doctor claims it isn’t) and so won’t cover the helmet required to fix it. After a visit to a specialist in Maimi (a three-hour drive each way), we were overjoyed to learn that Arlo’s case was moderate and we didn’t need to pay $4,000 out of pocket for a helmet.

Insurance companies have a long list of services they won’t cover, such as a cranial band. Our insurance doesn’t cover glasses or contacts, dentistry, chiropractors, out of state, devices like blood pressure cuffs, oral appliances for snoring, epi-pens, over-the-counter drugs, shoe orthotics, “unproven” techniques for disorders like autism, tonsil removal except in the case of documented sleep apnea, speech therapy, obesity treatment, in vitro fertilization, out of country, vaccines required only for school or camp, or autopsy.

I’m skipping over many, many small issues throughout the year. I called my insurance company at least twice a month all year long. It has taken a significant chunk of my energy and I have a little bit of post-traumatic stress every time I get a bill in the mail. The hardest thing for me is the not-knowing. Every time we visit a doctor, I have no idea how much it’s going to cost or what problem my insurance company will find. It’s not even the absurd amounts of money we are spending for sub-standard care. It is so stressful and time consuming to worry about my health insurance. Unfortunately, people must fight health insurance the most when they are SICK!  I can’t imagine having really bad health problems (like cancer) and having to simultaneously battle insurance companies over every bill.

I get it. Nothing is free. But unfortunately people that are on medicaid have no problems, old people are covered, people who have generous (or forced-generosity) employers are fine, and of course the wealthy have no problems. But there are an increasing number of people who have these problems. We are self-employed, free-lancing workers in the “gig economy” and are literally drowning from health insurance issues. To place the burden on businesses to provide health insurance is an unfair burden on small businesses (and often a cost gone unnoticed to the employee). In my opinion, it also binds a person to their employer instead of pursuing a new business or finding creative ways to make a living. And why should some people receive excellent care and benefits and others worse coverage?

This year alone, since we have fulfilled our deductible and paid large premiums, we have spent close to $30,000 on health care and insurance. Not to mention countless hours of time on the phone, the computer, reading bills, and bitching about our problems. Sure there are HSAs (Health Savings Accounts) available. These allow you to put money in a  tax-free account that can only be used for health purposes. They are useful for high-deductible plans so that when you need it there is money to pay for health costs. For some reason (maybe somebody out there can tell me), my plan says “HSA-ineligible.”

Purists will argue that a capitalistic health insurance system will benefit the individual since insurance companies have to battle for your business. Except in normal businesses, a company can choose not to do business with someone. If Ford wants to sell a bunch of cars to a car dealership in Tampa, but that car dealership will not give them enough money, the Ford company will refuse business. But that’s not fair when we are talking about life and death or bankruptcy.

Some people will say that in Canada or France or wherever else it takes ages to get an appointment. Our friends in Ontario who work at a doctor’s office says that isn’t true. And it already happens here. Summer needs to see an Ear Nose and Throat specialist and the pediatrics doctor’s earliest appointment is three months away. How can I wait that long while my daughter is snoring, having problems breathing through her nose, and not getting a good night’s sleep?

For me, the expense is bad, but the real issue is that tracking health-insurance is a full-time and difficult job. What about someone who works 40-hours a week and takes care of small children? How do they have the time to sit for an hour debating bills with a customer service representative? And what about the uninitiated? The jargon is confusing at best. A friend of mine told me about a plan she purchased outside the marketplace. It was almost as cheap as a marketplace plan, until she realized that the $5,000 deductible was renewed every 6 months. She didn’t follow the tricky lingo that the insurance agent used.

I’m getting really good at working the system. In fact, if anyone needs help choosing a plan (Bronze, silver, WHAT?), I am happy to give you advice. I wish someone had given me better advice. But I did learn a new trick. When one of my bills accidentally went to a collections agent while I waited for the insurance company to refile the claim, the collections company offered me a 10% discount on the original bill if I paid it in full. So the next time I received a bill I called the hospital directly and said, “The collections agency offered my 10% off an earlier bill. What can you offer me?” I saved $120.

The fact that I have to bargain, fight, compete, argue, complain, and struggle health insurance and health industries in this “greatest country in the world” makes me sick (HA HA). For the love of God PLEASE SOMEBODY GIVE US A SINGLE PAYER HEALTH SYSTEM.

A few months ago, we got another letter from our insurance company saying that our plan is no longer being offered in our area next year. So… back to the drawing board. What else can I do?




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