a tale of two testimonies

In regard to healthcare, I found the following two, recent testimonies fascinating. This is a little lengthier post than usual; however, the contrast is striking and insightful… two people, reacting to the exact same thing. First, from Lisa Morse…

“In 2010, at the age of 30, I ran my first half-marathon. A year later I ran my first full marathon (4:25:10 — you never honestly forget your first marathon time). I was in the best shape of my life. Although I gave myself a few months off from long-distance running, I started planning for my next half-marathon. Unfortunately, I began having intense joint pain in my hands, wrists, hips, knees, ankles, and feet. I was only 31 years old but felt like I was 80 — simply getting out of bed in the morning was a physically painful endeavor. Turning the pages of a book could cause ridiculously excruciating pain. It felt like my joints were being stabbed repeatedly with a knife that was on fire. Imagine going from running a marathon to just a few months later struggling to open a car door.

Numerous Google searches told me I most likely had psoriatic arthritis. I made an appointment with my doctor and the testing began. Because psoriatic arthritis isn’t something you can directly test for, I had to be tested for everything else that it might be. Blood tests ruled out rheumatoid arthritis, lyme disease, and parvovirus. I was then referred to a rheumatologist and officially diagnosed with psoriatic arthritis. Psoriatic arthritis is an inflammatory arthritis in which an overactive immune system attacks the connective tissue in the joints. If it is not treated, it can lead to irreversible joint damage. 15-30 percent of long-time psoriasis sufferers (I have had it since the age of 14) develop psoriatic arthritis, and I am one of the lucky ones. My rheumatologist prescribed hydroxychloroquine, a form of quinine, which suppresses the immune system. It provided some relief and life became a little bit easier — I even started running again — but my immune system still wasn’t working properly and I needed frequent doses of Aleve.
In 2014, my insurance plan changed and the rheumatologist I had been seeing for the past two years was no longer an in-network provider, so I had to change doctors. Although I grumbled about it at the time, it was probably one of the best things to happen to me medically since the pain began. My new doctor was astounded by the swelling in my ankles and in addition to telling me that I should absolutely not go on any more 10-mile runs (unless I wanted to start talking about ankle replacement surgery), he wanted to pursue a much more aggressive treatment plan. He prescribed Humira for me and the life-changing effects were almost immediate. My psoriasis cleared up entirely, the joint pain eased considerably, my energy levels increased, and I started to feel pretty good again. Humira is another immuno-suppressant. Although it sounds counter-intuitive, with a suppressed immune system I am sick much less often and much less severely than I was prior to Humira. In the two or three times a year I get sick now, I can usually work through it: pre-Humira I was sick once a month (or more) during the flu season and would miss at least three days of work at a time. Humira allows me to be a more productive, tax-paying member of society.

My two medications retail for $4,900/month and $175/month, which annually amounts to the cost of approximately 87 iPhones.

My experience with psoriatic arthritis and Humira have taken place entirely within the timeframe that Obamacare has been in effect. I do not have a job that provides health insurance. For the past 14 years, I have worked for a sole-practitioner attorney. I am his only full-time assistant. I serve as receptionist, office manager, paralegal, and more. My boss has always treated me well and is, quite honestly, much like family. I have helped to build his law practice into the success that it is today. My husband is a self-employed public policy consultant. We purchase our insurance on the marketplace and rely on the Obamacare subsidy to make ends meet. For our family of three, our silver plan premium (without the subsidy) is about $840/month. Our premium will increase substantially next year, especially if the ACA is repealed, and we will be paying more money for less coverage. If we lose our subsidy and our rate increases the 20-30 percent that is projected, our premium will be unaffordable for us. Without insurance, my two medications retail for $4,900/month (Humira) and $175/month (hydroxychloroquine—generic), which annually amounts to the cost of approximately 87 iPhones. On a side note, Humira was $3,200/month when I was initially prescribed it two and a half years ago—the drug has been on the market for 16 years, so the research and development has been done and over with for a long time. This mark-up should shock the conscience of anyone with a soul.

Thanks to Obamacare, my insurance cannot drop me or charge me more due to my condition. I have worked, paid taxes, and been insured my entire adult life. I am college-educated. Aside from the Obamacare subsidy I receive, I have never relied on public assistance. Psoriatic arthritis is not the result of unhealthy choices or stupid life decisions. I realize I am expensive to treat medically, but I am also a valuable member of society, as are many other similarly-situated people. No one is an island, and despite Ayn Rand’s writings to the contrary, civilized society requires a bit of compassion.”

And second, from Mary Katherine Ham…

“You may know me as a political pundit and writer who has spoken publicly about how the Affordable Care Act negatively affected my family. What you might not know is two years ago, I was a seven-month-pregnant widow with one toddler who got a letter two weeks after my husband died, informing me I’d lost my third or fourth health insurance plan since the Affordable Care Act passed. If you’ll remember, the promise was that I could keep my plan if I liked it. I could not.
I predicted what would happen to my family’s insurance, and to much less fortunate people subjected to the exchanges with us, many of whom have seen doubled premiums and tripled deductibles. If you’ll remember, the promise was everyone’s premiums would go down. They did not. For predicting it, I was routinely called a lying hack in public. It’s a hazard of the job, but I wasn’t lying. I was right. I also thought it was improbable the federal and state governments could handle building these exchanges and that they’d likely blow up and be inoperable, thereby preventing people like me from actually purchasing the new plans the ACA required we purchase. Again, I was not lying for partisan gain.

ACA has helped people. I know some of them well! I have two friends with serious health challenges, one of whom I can say was probably kept alive by Obamacare; the other by the fact she was able to keep her grandfathered pre-ACA plan. I am not in the habit of asserting any piece of health legislation is either perfect or a tool of evil designed by hateful actors. They’re not. I will not assert either of these fundamentally shallow and manipulative things about either ACA or adjustments to it (and, yes, this piece of House legislation is an adjustment or a reform, not a repeal, which would change dramatically in the Senate if taken up and change again before eventual passage).

It has come to my attention that, even among those who should know, or assert they know a lot about health care policy and the market, many don’t know that people like me exist. But there are many of us, many with far fewer resources than I, who now have much more expensive, less effective, junkier, nearly unusable plans than we had back when our allegedly “junk” plans were outlawed. Again, we are not the only ACA story. But we are part of the story, we were sold a bill of goods, and we’re often overlooked.
There aren’t a lot of good answers, here. There are many reasons for that, which start in the mid-20th century with a fundamental distortion of health-care markets through wage-and-price controls, and then a tax benefit that incentivized employer-based health insurance. ACA was not a good answer. AHCA likely isn’t a super one either.
In any system, and any change to a system, there will be people who come out on both the good and bad sides of the deal. When Obamacare supporters denied this truth applied to ACA, it was wrong. There’s the possibility of marginal improvement to it, but not if you do nothing, as insurers and customers alike pull out of exchanges because they can’t afford to stay in them. Yet another major provider announced this week it will drop out of the Virginia exchange. Republicans were elected several elections over to address just this problem.

Most people who aren’t in the individual market, which is the one most affected by ACA, have no idea what the plans look like. It is a market where the costs of the bill’s mandates are more visible, even when subsidized. When I cite exorbitant deductibles, folks tell me to suck it up and pay $3,000. I laugh at a $3,000 deductible. What in the old system was considered a very high deductible is now among the lower available, and premiums for any kind of deductible are high, even with subsidies. Many families have to hit $12,700, and they’re paying a mortgage-sized premium. For many, the purchase becomes hard to justify or supplants an actual mortgage or similar outlays.
Arguing about this as if beneficiaries of ACA don’t exist isn’t right. Arguing about it as if people like me don’t is also not right. ACA was never the panacea it was sold as and it remains distinctly un-utopian in its results. Lazy characterizations of things you like as perfect—and of people you oppose as big fans of people dying—are not particularly helpful to actual people.
So if you’re weaving a utopian or dystopian scenario for Facebook, remember reality is almost always less extreme and more nuanced than you’re asserting, and you probably know a real human on both sides of every imperfect adjustment to our Frankenstein system.
One of them was a pregnant widow who had to spend her 32nd week of pregnancy and the first week after her husband’s funeral calling midwives, doctors, insurance companies, and help lines to make sure she’d still have the third plan she was promised she could keep.

My family may be the trade-off that was worth it for you to implement ACA. And I’m actually fine with you thinking that, as long as you don’t pretend we and the rest of the people like us don’t exist. We’re probably never going to stop arguing about this, but arguing responsibly and empathetically is better.”

Striking, isn’t it? … how for some, the Affordable Care Act has been helpful, and for others, the exact same law has been hurtful.

I’m thinking most of us need to broaden our perspective… maybe… just maybe.