Healthcare is Broken in America

I didn't anticipate so many of my blogs would be around health conditions and healthcare, but with my recent celiac diagnosis and everything I've been through in the months leading up to it has reminded me of just how incredibly difficult it is to get effective and affordable care in this country.

Healthcare prices are a cancer

My thyroid cancer removal surgery cost $55,000. Thanks to my health insurance, I only had to pay about $1,600 out of pocket. A visit to the ER last month where I was poked twice for one blood sample came out to $4,000, and my out-of-pocket expenses amounted to around $350. I went to an appointment with a GI doctor in late September where he asked me a few questions before determining I needed an endoscopy and some blood work. I just got the bill for that appointment which came out to $750. My endoscopy was last week and I can only imagine how much that procedure -- which requires anesthetics and a full team -- can amount to.

A friend had twins in 2021 via C-section, and with insurance she and her husband still had to pay $8,000 out of pocket. When they asked the hospital for an itemized bill, they saw they had been charged twice for the C-section incision because she had twins (even though the incision was only done once).

Today I found myself in the ER again as I was severely dehydrated and near losing consciousness after close to two months of celiac disease-related symptoms. Despite the fact that I told them I was dehydrated and that I had just been diagnosed as celiac, they took several tubes of blood and they did an arguably excessive amount of panels, all to just give me an IV and send me home. I haven't received that bill yet, but I will update this when I do. I assume it will be somewhere around $6,000-8,000 given the amount of tests they ran, added to the fact that this time they actually treated me with the IV.

The experience doesn't match the price

When I awoke from my endoscopy and I was told I am celiac, the nurse offered me apple juice and crackers to break my 14-hour fast. Despite the fact that I was still regaining consciousness, I had the wherewithal to ask "are the crackers gluten free?," a question she did not know the answer to. In a GI unit. Today when I was in the ER, they offered me food as well, and I again asked: do you have gluten-free options? The nurse told me she would go check, and she never came back with an answer. How do hospital staff not have enough knowledge about the food they are offering patients, and how do hospitals not have an established gluten free inventory when at least 1 in 133 Americans are affected by the disease? I was mind-blown, and I think I will be for a long time.

Here's another personal side note to all of this that I think is just the cherry on top of this circus: I have historically had difficult veins to access. I always warn every phlebotomist, anesthesiologist, or nurse about this when they start working on me. They either look at me like I'm being dramatic, or they have some ego-driven response like "I'm on a streak and you're not going to be the one to break it." The last three people who told me I wouldn't break their streaks have broken them in my arms. One was an anesthesiologist last week, another one was a paramedic last month, and the most recent one happened today with the "best" nurse that they seek out for patients "like me." When he started working on my arm he said that some people say they have difficult veins when they actually don't, but that I actually was right. And after he failed his first poke attempt, he said "oh, you just got interesting for me, which is what I like."

This is someone I'm supposed to trust with my healthcare?

And of course, I'm not generalizing all doctors, nurses, and medical staff across the board. There are amazing, capable, and caring people in healthcare, but the system is broken for them too. What has happened with nurses since the travel program from FEMA started in 2020 has created chaos in the form of obscene pay disparity and staff shortages , despite a few concerted efforts to stop the crisis.

Advocate, advocate, advocate

Our healthcare is not only in the hands of medical staff, but it's on us as well. I have had a hard time learning to advocate for myself due to my people-pleasing nature, but the more experiences I have, the less willing I am to entertain some medical staff's dismissive and condescending approach and responses. I have received healthcare in South America, Asia, and Europe, and at times they provide care leaps and bounds ahead of the one here, and patients aren't faced with the decision of whether or not to seek care due to economic struggles. When I lived in the UK between 2019 and 2021, I paid about ￡2,000 to be entitled to medical insurance for a whole year, and when I had to visit the ER or see the GP, all the visits and tests were covered and all prescription medications were ￡9.15 (this price has gone up to ￡9.65 in 2023 ).

I don't have the answers to fix this issue, but I have experienced better elsewhere, so I know it's possible. We not only have to advocate for ourselves as patients in medical facilities, but we also have to do so as tax-paying citizens in a truly broken system.