My experience with the American healthcare “system”

I started this blog as a sort of gratitude journal, a place for positivity. But I have a story I want to tell, I want to get down in writing and I have nowhere else to post it.

It always sends a grating sensation down my spine when people string together the words “American healthcare system.” There is no “system.” What we have is a random pile of healthcare-related stuff.

This is a story about that pile.

At the time I was first diagnosed with cancer in 2017, I had an employer-sponsored health insurance plan through Providence Health System. The system runs both the insurance company and a collection of hospitals and clinics up and down the West Coast. The main Providence Medical Center is only a mile from our house, the doctors and staff are great, and I always knew everyone on that campus was in-network.

I was paying $400 per month for my health insurance premium. I think my employer was paying about $600 for a total of $1000 a month. For this plan, our family annual out-of-pocket maximum started around $12,000 a year and ended at $16,000. I have cancer and my wife and son have medical problems so we needed to pay the 5-digit maximum every year. Of course I wished my out-of-pocket costs were lower, but I was pleased with the care we were getting through the clinical side of the Providence system. (I still am.)

In 2018 I returned to work after an approximately one-year absence. My employer was loaning me the $1000 a month interest-free but expected to be paid back. They docked it from my paychecks for a couple of years.

The cancer recurred in 2021 and I was out of work again. By that point my total monthly premium had increased from $1000 to $1400 a month. After about 6 months I got an e-mail from my office’s clinic director. He said that I was racking up $1400 in debt a month and I should look into getting a plan from the Obamacare health insurance exchange. He said Providence was on there and it would probably save me a lot of money.

I looked at the Providence Obamacare plan and it looked pretty good. The provider network was identical; I wouldn’t have worry about changing cancer doctors mid-treatment. The annual out-of-pocket maximum was a little bit lower at $14,000. I qualified for low-income assistance that meant it only cost $199 a month, rather than $1400. There was one catch that I could see. I had just had a couple of chemo treatments through the old plan and had paid $7000 towards my out-of-pocket. When I switched plans the out-of-pocket would be set back to zero and I would still have to pay $14,000 before any coverage kicked in.

Despite this, the numbers added up that the Obamacare version of Providence Health Plan was a better deal and I switched. Our ID numbers on our cards didn’t even change. When I gave my new card at the doctor’s office, the new info was already automatically in the computer. It was a seamless switchover. I was under the impression that I was signing up for basically the same thing, just with the government helping to pay for it.

I can’t remember if I noticed there was a difference in out-of-network coverage. That aspect of the plan was unfortunately not on my radar. I had happily kept all my care within the Providence system and I assumed I would continue to do so. I didn’t notice that my new plan’s out-of-network benefit is ZERO.

Translation: if you need lifesaving care that is available in another part of the country, but is not available at the Providence-affiliated hospitals on the West Coast, the expected clinical plan is for you to die quietly.

My oncologist met with my surgeons, radiologist, and pathologist at the weekly tumor board. They were unanimous: I needed complicated surgery but there was no facility in Portland capable of doing it. They said I would need to go to a high-volume cancer center: MD Anderson in Houston, Mayo Clinic in Minnesota, or Sloan-Kettering in NYC.

The Providence Health Plan Medical director, a doctor I’ve never met, who I assume makes more money the less care I receive, wanted me to get an opinion from a local surgeon at OHSU (Portland’s big university medical center). Wouldn’t my Providence surgeons know what procedures are available 5 miles away? Did they think I needed to fly to Houston for the extra radiation I’d receive during the flight?

Very unsurprisingly, the OHSU surgeon said he couldn’t help me. He recommended I go to MD Anderson or Mayo. That’s a month of my life I won’t get back.

It’s been almost 3 months since my oncologist referred me to MD Anderson. I’m on an unanticipated round of chemo because I can’t sit around forever with no treatment. At this stage, MD Anderson’s and Providence’s lawyers are arguing to figure out if I’m a human life worth saving. For situations like this, there needs to be a “single case agreement” for payment. MD Anderson will only accept an agreement filled out on their form. Providence will only accept an agreement filled out on their form. So the lawyers need to negotiate a new form with new fine print. They have negotiated prices. But there needs to be a clause outlining what happens if MD Anderson charges more than the negotiated price. Because apparently MD Anderson plans on agreeing to a price, then charging more. I kid you not, my life depends on whether lawyers cut me a break.

I feel at this point the 2 parties that hold my life in their hands have failed to establish a collaborative relationship and are now adversaries.

Think about it. Let that sink in. In this country, you, anyone, could find yourself in a situation where the decision to proceed with lifesaving cancer treatment is decided not by doctors, but by lawyers.

My Providence Health Plan case manager told me that the issue would be resolved “tomorrow,” 3 days in a row this week. Some of the MD Anderson people I’ve interacted with clearly don’t care if I live or die. It’s chilling to have a conversation like that. I’m having to hedge my bets and my PCP referred me to Mayo last week. I’m going to call them tomorrow and see if we need to start this whole process over again.

My take-home lesson: When someone utters the words “American healthcare system,” correct them. There is no system.

ETA: I just read an article about me.

Academic research has revealed widespread self-rationing by patients. For example, while nearly 1 in 5 people taking oral chemotherapy abandon treatment, about half stop when out-of-pocket costs exceed $2,000, according to a 2017 analysis.

https://www.npr.org/sections/health-shots/2022/07/09/1110370391/cost-cancer-treatment-medical-debt

There was a time when that fact would have surprised me, but I’ve just watched 1.1 million Americans die of Covid.