Lupus patient Jennifer Clare Burke knew she couldn't afford to lose her good insurance coverage. As it turned out, the Affordable Care Act just made it less expensive.
I have to have health insurance—not because of the law, but because of the lupus. My immune system doesn’t work properly, so I’ve spent the last 15 years learning to deal with unpredictable inflammatory attacks that send me to the hospital, each time incapacitating a different body part: the time scleritis temporarily blinded me in one eye, for instance, or the time the leg pain was so intense I couldn’t move without a walker. So I’d only halfheartedly followed the endless debates over Obamacare, because there wasn’t much point in getting anxious about it ahead of time. Healthcare isn’t about politics for me—it’s about the struggle to maintain my current level of physical functioning and pain management. In other words: Whatever the new healthcare laws made possible, that’s what I’d be doing.
As a self-employed independent contractor well accustomed to paying for my own insurance, I’d been happy with the care I’d been getting for years under my Independence Blue Cross Personal Choice plan. I wanted to continue with what was already working—and yet, I had some concerns.
Here’s the thing: I’m 39, with a birthday coming up fast. For several years now, the big four-oh hasn’t filled me with any abstract dread but with the very practical dread of knowing that my monthly health insurance premium is sure to skyrocket when I cross from the 30-39 age bracket to the 40-49 bracket.
Right now at 39, I pay $484.47 per month. Currently, those in the 40-49 age bracket of my same plan pay $613.48 a month. Oh em gee.
So, two weeks ago, knowing that the website portal to the new federal healthcare setup had been plagued by a glitchy launch, I took the simpler option instead: I picked up the phone and called Independence Blue Cross to figure out what Obamacare was going to do to my life.
“You see the level of care I have right now,” I asked the customer service rep, “and the way I can choose the doctors I want to care for me?”
“Give me that. I want this settled today and don’t want to stress over what’s going to happen to my access to care this year. I want to know what I’m getting and how much it’s going to cost.”
If that sounds demanding, well, I’ve learned I don’t have much wiggle room when it comes to medical questions.
Last June, I found myself in the emergency room. Ironically, I was already in the hospital: My mom had been diagnosed with ovarian cancer, and, at her request, I’d moved into her hospital room with her.
It flashed me back to the time when I was 12 and hospitalized for a solid week that left me with a shiny scar that runs from hip to hip; my mom slept on a makeshift bed next to my hospital bed, and now the karma wheel had come full circle. But my body didn’t let me forget that it was chronically ill. While I tried to pace myself and adjust responsibly to being on call for my mom 24/7, eventually I pushed myself beyond the limits of my medication and landed in the ER with a lupus flare-up. My joints were already throbbing; the weakness and a killer headache hit with pain and fatigue that started a cycle of vomiting and dehydration. I needed a strong wallop of IV corticosteroids, among other medications, to reduce the inflammation.
My husband took my place in the cot by my mom’s side, so she wouldn’t feel alone—which meant it was a succession of friends who came to watch over me in the ER. I got to introduce Gus, my work friend, who held my hand while the nurse inserted an IV, to Bob, my gym friend, who subsequently drove me home since I was too medicated to drive myself. For some people, getting acquainted over a sick body in the hospital might seem strange; for the people in my life, it’s just understood that this is part of the way of things.
Still: “What if I barf in your truck on the way home?” I asked Bob. I had never barfed in his presence thus far, so as friends, we were exploring new intimacies. I wanted Bob to know I was ready with the plastic barf bin in case I needed it. “I’m a really good shot,” I told him. He assured me he’d already put a towel on the front seat. That’s the kind of quality I’ve gotten good at spotting in potential friends. Fortunately, as I grew groggy from the drugs hitting my body, my symptoms quieted, and Bob drove me home without incident.
I was alone that night in a dark apartment while, back in the hospital, my husband and mother dozed without sleeping much as Mom’s constant symptoms brought nurses and techs to her side. The following night, I was by her side again—as I was every night and most every day until her death two weeks later.
My mom’s hospice stay was a time in my life when my self-care routine was writ large: Every moment, every little action I took during those weeks, revolved around managing my disease’s demands to an excruciating degree so that I could accomplish the one thing I most wanted: to be fully present for my mom’s journey out of this world.
My usual daily life, though, involves the same basic struggle of pacing all aspects of a life around illness. I obey all the rules of medication, rest and exercise—aware all the time that my healthcare needs represent a precarious balance: If I don’t receive the proper medical care, then I can’t work, can’t make money and can’t pay for insurance or anything else, either.
I’m on a tight leash not only with my physical routines, but also with my work routines—and especially with the way those two intersect. In January 2012, I made a New Year’s resolution not just to earn more income, but to develop my career so as to reach a more stable perch in life—which I figured out I could achieve, but only if I took advantage of every hour in the day. So I started asking friends who lived near different work sites if I could crash at their place for a few days at a time to minimize the commutes that drained away so much energy and so many billable hours.
It has worked—but it has not been ideal for me or for anyone, to say the least, to haul my belongings around and sleep on an assortment of guest beds and couches. This year, I continue to work more than one job, structuring my life to make sure I have enough of an income buffer to cover health needs while paying other bills—but because of that New Year’s resolution nearly two years ago, I was finally able to start working for myself as a lawyer focused on disability issues.
Living in the non-Obamacare universe, I spent much of the past year steeling myself for a big financial hit that would accompany my turning 40. It’s not merely the wide gap between the $484.47 I’m paying as a 39-year-old and the $613.48 currently on the books for a 40-year-old with the same plan; there’s also the fact that I’ve seen my monthly premium climb by about $40 every single year for the last several years. Those annual hikes had nothing to do with my age bracket—they’re just the reality of the insurance business, so it seemed only prudent to expect that I might be facing a $650 monthly premium come 2014. That would be about $2,000 more a year than I’m paying now.
Savage Love: Sondheim is solace