Health care is personal

Conservatives who want to end the ACA are a threat to my safety.

Back in 2004, I had a strange illness that caused me to run a high fever and have night sweats. It went on for days. My doctor was determined to get to the bottom of it and ran test after test, looking for any clues.

One of the tests revealed that a specific antibody called immunoglobulin M was elevated. The only thing that causes a spike like that is non-Hodgkin’s lymphoma, a group of cancers that originate in the lymphatic system. A bone marrow biopsy identified my specific cancer as Waldenström’s Macroglobulinemia, or WM for short. Ironically, it had nothing to do with my fever or night sweats. They just stumbled upon it.

I was able to get diagnosed, in part, because I had health insurance. I was self-employed but could afford a policy that covered most of the tests. However, in those days before the Affordable Care Act, I was unable to afford decent insurance again because I now had a pre-existing condition.

For the next decade, I lived with a bare-bones insurance policy that covered little, was prohibitively expensive, but protected me from losing my house if I happened to get sick. Fortunately, my cancer was slow growing and I remained asymptomatic. My doctors just monitored the protein level with regular blood tests.

When Congress passed the Affordable Care Act, I was finally able to get insurance that offered more than just minimal services. While I pay more than most people who have insurance through their employers, my Obamacare policy is still affordable and offers decent coverage for most services. Unfortunately, I’m now entering a stage where my needs are not normal.

Since the beginning of the year, I’ve been dealing with a series of ailments that are related to the cancer. I’m also going to assume a fairly massive amount of debt every year, probably for the rest of my life, unless something happens with our health care system or they find a cure for my cancer. It’s rattling to go to the doctor, sign in at the kiosk, and have the screen read, “You owe $1,832 for this visit. Do you want to pay now?” Of course I don’t, so it goes on my ledger that I will see in MyChart in a month or so.

I met my deductible long ago, but the bills keep piling up because there’s a difference between what the hospital charges and what the insurance company is willing to pay. That gap is my responsibility. So far, I’ve had two MRIs, a CT scan, a bone marrow biopsy, and a lumbar puncture, formerly known as a spinal tap. Besides my deductible, I owe an additional $1,800 already and the bone marrow biopsy and lumbar puncture aren’t included in that figure.

I haven’t even started treatments yet and the drugs they use aren’t very common, so I suspect they won’t be cheap, either. I have an out-of-pocket cap of $10,600, but that’s not an expense I was counting on. I’m sure I’ll manage it, but I’ll likely be carrying substantial medical debt for a long time. Between my insurance premium and out-of-pocket expenses, health care will probably become my largest single expense.

I don’t like to write too much about my personal life, especially something like this, but I suspect I’m going to get my panties in a wad over our health care system in the coming months and years. For the people who want to end the Affordable Care Act, I take it personally. Without it, I couldn’t afford care or I would have to lose my house and all my assets before I could receive it.

The Affordable Care Act as passed dealt mainly with the number of people who lacked health insurance, reducing it from more than 16% of the population to about 8%. That’s a great start, but it didn’t deal with rising costs, though it did slow the rate of increase. The next step is to reduce costs to the people who need care.

The United States is the richest country in the world and it’s not even close. We also have among the most expensive health care in the world with among the worst outcomes, and that’s not even close, either. The Affordable Care Act was the first phase in dealing with our health care problem by expanding access to care. Now, it’s time to improve the system overall by making care both more affordable and better.

We’re about to have a trillionaire in the country and conservatives are complaining that too many people are getting Medicaid. Please. They are arguing that we need to go back to the system that priced almost one in five Americans out of the market while receiving care inferior to the rest of the world. Cutting taxes and reducing regulations isn’t going to fix this problem no matter what Republicans tell themselves.

Instead, we need to try what’s working elsewhere. The system might need to be uniquely American, but it also needs to provide services without forcing bankruptcy or leaving people to die.